Afleveringen
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This is a very short recap of stirred thoughts and feelings after talking to Miriam last week about her amazing self advocacy as a young breast cancer survivor with complicated hormonal needs.
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Transcript:
Welcome back. Today, I'm just going to be recapping some of the topics that came up in the last interview, last week's podcast episode with my friend, Miriam Janove. Miriam is a young breast cancer survivor, just three and a half years out from her diagnosis. And she had a lot to say about a lot of subjects that are common for young survivors.
The first one that came up was the idea of over diagnosis and over treatment for young survivors. As she had stated, she got a second opinion, not because of the concern over whether she was being over treated, but because she needed a surgeon that really knew how to do her surgery, but she ended up with a new oncology team who ended up treating her very differently than what her first oncology team told her they would. And that was because of her age. She was in her 30s. And it was pretty clear that her first oncology team had a bias that said that young survivors need chemo regardless of whether they have an oncotype test that says that they are low risk or high risk.
Her second team of oncology professionals had a very different take and they really relied on her oncotyping to determine whether she would have chemo. And like so many of my guests, unexpectedly, she did not have chemo. It's so funny to me that I keep having guests that I assume have had chemo because you always assume folks in the breast cancer community, if you know them from this place--you assume it's pretty likely that they've had chemo, but it turns out that only, I think one of my guests so far has ended up having chemo.
Some of them turned down chemo and others were told they didn't have to have chemo. So Miriam was one that was told very clearly that she was not even being asked to take chemo. So pretty rare, I think classically for young survivors, but more and more we are seeing people who are, Healthcare professionals relying on the oncotyping test to see whether or not they really need it.
And so she was not overtreated. She was not given chemo when she didn't need it. Of course, we don't know. She's only three and a half years out. As she said, she's still, you know, somewhat at risk as we all are for recurrence or metastasis, regardless. But really nice that she didn't have to go through that particular hellish part of the breast cancer experience.
Thank you. The other part of her young survivor story that came out was her desire to be around, um, multi generational people. So she wanted to be back with her parents. She wanted to be around younger children. Kind of a revisiting of her values and really placing family and friends and children, the children of her friends, over her career as a big priority. So that was a theme that I think is really very common among young survivors. We, a lot of us, think differently after breast cancer about what our ambitions really are serving and where our ambitions really lie. And I think Miriam's a really good example of that.
A big part of Miriam's story that we didn't talk about because we didn't have time is her history of gynecological problems of hormone imbalance and dysfunction around her menstrual cycles. And she did refer to the fact that she had lost her ovaries. And I wanted to clarify because I think people probably wondered after hearing the last interview that she Miriam was not asked to give up her ovaries because of being treated for breast cancer specifically.
She was asked to give up her hormone treatment, which she had had, pretty much her whole adult life because of menstrual dysfunction and hormone imbalance. And so she was on estrogen and progesterone, or otherwise known as birth control, not for the sake of birth control, but for the sake of managing her very difficult menstrual symptoms and after breast cancer, folks who are dependent on hormone treatment, hormone therapy for those kinds of symptoms have no choice but to give up their ovaries if those symptoms are extreme as hers were. And so she was not put on ovarian suppression. She was not offered ovarian suppression drugs and she did need to give up her ovaries. Regardless, because she was so dependent on hormone therapy. And so, I think just to reassure those listeners who are very concerned that they might have symptoms as extreme as Miriam's, which were, you know, extreme energy loss, extreme brain fog, and some pain, um, some bodily pain also.
While those are common side effects of estrogen deprivation and endocrine therapy that comes for many of us after breast cancer in the form of tamoxifen or aromatase inhibitors. Her symptoms were actually more extreme because she also lost her ovaries. And at that young age, it's very difficult to lose your ovaries and to lose that supply of hormones that we're used to having at that stage in our lives.
So I want to reassure people that even though tamoxifen can have extreme effects and really alter our lives and our lifestyles, it is not quite that extreme for most of us. And I think that personally, I think that Miriam's ovary loss had something to do with that as well. I'm sure she would agree with me if she were here to comment.
Really interesting set of characteristics. I wanted to talk a little bit about the fact that she had to search for a different surgeon. Again, it's just so common to hear stories of these kind of contrasting first and second opinions, whether it be for surgical procedure or for breast cancer treatment. In Miriam's case, it was both. She was looking for someone with experience with flat closure, and she didn't find that on her first go round, and she had to look elsewhere, and thankfully she found it in her second try, the second healthcare system that she tried in her city. I happen to have also gotten my second mastectomy in Seattle, in her city, and I was at a third healthcare system at that time.
So if you're in Seattle, two out of three healthcare systems that I know of are really good at flat closure. But I think, especially in smaller cities or towns, it is really hard to find a surgeon that does it well. And then if, like me, you're looking for a Goldilocks procedure, it's even harder to find surgeons with experience in that area.
So, really good to hear Miriam talk about how she was reassured that she didn't need to be in a rush and that she could afford to take that time and look for the right practitioners. I love that part of her story. I think it's so important to tell because so many of us feel rushed. Even when we are reassured that we have time, we want to act as soon as possible. We don't want to wait. I personally would never have gone up to Seattle to seek a surgeon or even looked on Facebook for pictures of surgeries of Goldilocks if I hadn't found out that my first choice of surgeons had broken her foot and she was putting me off a couple of months for my surgery only because I was afforded those couple of months to look around, did I get choosy. And I just really want to reiterate what Miriam said is you have time to get choosy unless you have an aggressive. are fast growing cancer. Those are the terms that your doctor will probably use to refer to it if it is, you know, the kind of cancer you need to act on quickly. That type of cancer is pretty rare in breast cancer.
So most of us do have time to look around and get a second opinion. And as Miriam mentioned, she got her education in terms of what to do practically on Facebook. And so many of us do. There's a huge, um, uh, vis, visual kind of support system on Instagram as well in terms of like looking at each other's bodies and each other's outcomes. I've loved connecting with people on Instagram even more than Facebook because Facebook can be so dicey, but Facebook is really the place to go. If you're looking for quick answers in a forum full of women that have been through what you're looking at going through. And both Miriam and I found those answers.
Thankfully, I found a photograph of a woman who lived up in Seattle who had an outcome that I realized I was capable of having, that I could actually still have a small breast after a mastectomy without having an implant. And that's how I learned about Goldilocks, and that's how I found my surgeon for my second surgery/mastectomy. So, really important to know about these Facebook groups. I know that Miriam is on a number of the ones I'm on for flat closure. The main one is Fierce Flat Forward. That's where I found that photograph and there are so many Facebook groups for so many different issues and topics around breast cancer and breast health.
So if you don't know about those and you're kind of in an urgent situation where you really need to find the resources, just pose a question there. You can even do so anonymously if you'd like to. So that's, there's that option now, and the groups tend to be private, and they have some screening that restricts outsiders, people outside the breast cancer community from getting in.
So it's a pretty safe community. Now, if you want to state your opinion about going out in public without your shirt on, you're going to get some pushback in that community, because there's a lot of debate about whether that's respectful and appropriate socially. And, uh, and you might notice that the cover art for last week's episode was indeed me and Miriam with our shirts off.
So, uh, the flat community is kind of famous for, for doing that in the context of a breast cancer walk and breast cancer awareness events. And that's, those are the times that Miriam and I, and those are the times that Miriam and I have done that. Just in that context of other breast cancer survivors. So, uh, we have, we have fun doing that.
We're both kind of uniboobers. And so we both have, um, tend to use a one sided bra in those contexts. And actually she and I are planning to meet up at a breast cancer walk this weekend. The first one of the season here in the Northwest. She and I are both going to be tabling at, um, events in Seattle this year.
We'll for Stantol AFC. We're starting to have tabling this year for the first time. So she'll be one of the other tablers in the two big walks in Seattle. So you can look for her there if you live in Seattle. And I just wanted to wrap it up real quick and leave it at that for this week. I am between vacations right now.
I have a very luxurious August. I, I had a wonderful restful vacation at the coast last week. I'm doing a quilting retreat this week and next week I'm going to be at Burning Man. So. I am putting out the podcast on Wednesdays this month because they're a little bit delayed and that just gives me a few days to catch up.
But um, I expect that my next episode will not be a guest interview as is the pattern, but rather will be a conversation about my experience with radical self expression in Burning Man. Uh, Burning Man has a tradition of um, celebrating impermanence. And the things that are changeful in life, including loss and death.
And I, I have a need because my mom died of metastatic breast cancer a few months ago. I have a need to grieve her and pay more attention to my own grief. And I'm planning to do that there. But I'm also planning to be around other women who have lost their breasts and who have learned how to ritualize that experience and grieve that experience.
Um, so I'm really, really looking forward to meeting other women, especially who are in the same position as I am, having lost my mom, having lost my breasts, having breast cancer as my main adversary this year and last year, um, and just doing some appropriate grieving because I think our, our culture just doesn't allow us to grieve appropriately.
And I think probably my Instagram account will be the first place you'll be able to see me at Burning Man. I'll be taking pictures of myself and having others take pictures of me. Mostly, I won't be taking pictures of others very often because they have a policy against that, that I really support and believe in.
So, it'll mostly be pictures of me at Burning Man. But I hope to take a lot of them and share them on Instagram. And probably one will be the cover art of my next episode here, which will be out a couple of Wednesdays from now. Um, and I will talk to you then take care. -
My dear friend Miriam has a lot to say in this interview about work and breast cancer. She also makes a really good argument for getting a second opinion.
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Zijn er afleveringen die ontbreken?
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There are some terms to define from the last episode, but mainly I want to talk more about the idea of self blame and "I must have done something wrong" raised by Avena last week. This is a topic worth discussion.
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Watch the podcast on Youtube here:
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Transcript:
Today I'm doing another diary entry that's reflecting on my last interview. My last interview was with Avena Ward, my friend and writing partner, who had her first mastectomy 30 years ago. So she had some really old terms that I'm going to talk about today. The theme of the interview was following your intuition and self affirmation rather than self blame.
But we also talked about some older kinds of procedures that I just want to talk about that are not really in use anymore, but you might hear about from friends that have had mastectomies in the past, and you might wonder about them because of that. So thought I would just define some terms as I usually do on the week after I have an interview, and then also talk about some of the general themes that came up. Avena just had so much great insight and wisdom and her sense of intuition is so spectacular. I just wanted to talk and reflect a little bit on that as well.So the first term that came up in the interview last Sunday with Avena was the term âradical mastectomyâ and you don't hear about this happening anymoreâit doesn't really happen anymore. I don't think I've ever heard of anyone in the last 10 or 20 years that's had one. What this means is they used to take not only your entire amount of breast tissue out, but also every single underarm lymph node. There are lymph nodes all over our body, so obviously I'm not taking every single lymph node, but the ones that are located under your arm, which is a very invasive surgery that ends up having a lot of symptoms and that's why they no longer do this procedure. But also part of your pectoral muscle or chest wall muscle is taken in a radical mastectomy. These days that still can happen. You still can have some scraping or removal of the pectoral muscle.
I did myself because my DCIS had grown into the outer layers of my pectoral muscle. So that's not unusual. But that is not a radical mastectomy in itself. It has to include all three things, all the breast tissue, all the lymph nodes under the arm and the part of the pectoral muscle that is located under the breast. It's only a little less than half of the pectoral muscle that is located under the breast, but that is also removed in every instance with a radical mastectomy. And for that reason, yeah, we, we just don't see that being done anymore. Mostly because lymph node removal is very costly. in terms of quality of life and, uh, side effects of surgery, which in most cases is lymphadema.
More, and more, and more, you see the science pointing towards less lymph node removal, really lessening that as much as possible. I was in San Antonio for the big breast cancer conference, research conference, this last December, and that was actually the biggest takeaway that most of us got, I think, was really lymph node removal is not going to benefit us if we can replace it with radiation. Because radiation does not result in as many long term side effects or quality of life issues like lymphadema. And with most surgeons techniques these days, the removal of lymph nodes more than one or two really does. It is very likely that folks will get long term lymphadema, and lymphadema is a really big hassle. You have to wear a sleeve in the summer when it's hot, your arm is always Um, I have a lot of friends with lymphadema and it doesn't go away. It's not something you can address with drugs or therapy. And so folks are in the medical community and research community are listening to patients when they say âit has not been worth it for me. I would have rather had more radiation.â And so that's what's happening now. We're changing still in this trend toward moving away from lymph node removal. Again, I'm not an expert. I'm just an advocate. I'm a well informed advocate, but your doctor is the expert. So do not take my advice here as medical advice.
I am only trained in nutrition in terms of medical advice. So, go back to your doctor with this information and seek out their expertise on this if you can. And if you have questions, cause I'm not the one to ask, but it is really interesting to me that we're moving away from those more invasive types of mastectomy procedures. So, we do have something called a modified radical mastectomy these days, and that is taking less lymph nodes, but my guess is that even a modified radical mastectomy is on its way out based on what I saw in San Antonio this last December.The next concept that came up in my interview with Avena is a favorite of mine.
She is a survivor of lobular cancer and lobular breast cancer is something that most women don't know about, even if they were diagnosed with it. Sometimes doctors don't tell them that they're diagnosed with it, number one, and most doctors don't fully understand it themselves because it has been drastically understudied and very, very seldomly separated from the other type of breast cancer that is more common, which is Ductal. And the two names of Ductal and Lobular are even being revisited these days in the scientific community. And that's kind of hot off the press. Only the people that are on the inside of Lobular Research really know that, so you're not going to hear your doctor affirming that probably, but because I am an active volunteer with the Lobular Breast Cancer Alliance, and I go to staff meetings, and I hear the latest news, that is something that has just come up in the last couple of months that Lobular was called Lobular because we used to think that it was located, the cancer was located in the lobules or that it started in the lobules, and ductal was called ductal because you thought it started in the ducts, but you can have Lobular breast cancer in the ducts and you can have ductal breast cancer in the lobules.
So those are misnomers. They are mislabeled names that really probably should be replaced with a little bit more accurate names. The thing that makes lobular cancer itself and distinct from ductal is that it grows invisibly in a spiderweb like formation and not a lump or a tumor. So it is very hard to detect. And that's why I was shocked when Avena said that they actually detected it in her biopsy with Dr. Thurman. And I'm all the more impressed with Dr. Thurman's techniques because of that, because generally, you don't get, much of lobular in a biopsy unless it's really extensive, and Avena's wasn't very extensive.
So, kind of surprising that they did catch it in the biopsy. I will talk a lot more about lobular breast cancer in the future because it deserves a couple hours of dedication and this is just a light summary of terms, but suffice it to say, there is a characteristic called E-cadherin. It is a genetic characteristic, not always an inherited generic characteristic, so not always something that we get from our mother or father or grandparents. Sometimes it's a mutation that happens. during our lifetime, just in us, and it is called E-cadherin. E-cadherin is the glue that sticks cancer cells together and makes them into a lump or a tumor, which turns out is a real blessing because we wouldn't detect cancer if it didn't stick together with that E-cadherin component and form a tumor, um, as often. So, lobular breast cancer is not detected as often as is the case in my own story. I did not know that I had lobular breast cancer until it was already out of my breast. And many, many women find that to be the case. A lot of times you're going in after ductal or DCIS. And as kind of a, a side effect of surgery, you see that you also have invasive lobular breast cancer in there, and it was invisible to all the scans.
I had a PET scan, I had many MRIs, I had many ultrasounds and many mammograms, none of them picked up my lobular breast cancer. Albeit, it was a very small amount of lobular, I should say. If it gets quite large, then the scans will tend to pick it up, especially on an MRI. But there is new technology, a new PET technology in particular that will show a lobular growthâit's not a tumor, but a lobular lesionâwill show up, um, on these new PET scans really well. So there is a new technology that we've seen getting developed and being tested and used in the scientific community. And it is just starting to be used in the clinical community now. So that's pretty exciting.
I'll talk a lot more about lobular as we have more guests on that have that diagnosis. And I'll probably take a whole episode at some point just to talk about what we've learned. Because we have a lot that we're learning about lobular now that there is research that's dedicated just to it and not to the greater breast cancer community.
I will say though that there is an event this year that you should know about if you have lobular or if you've had lobular or if you're interested in lobular, this year will be the first year that we will have an international lobular awareness day or lobular breast cancer awareness day. It's going to be on October 15th. And different states in the U. S. are in the process of approving it as a National Awareness Day. And we're going to have events all over the U. S. Here in Portland, Oregon, there's one at Providence Cancer Center in Northeast Portland, there's going to be an event at Sloan Kettering and MD Anderson and a number of other places there's, they're going to ring the bell at the Stock Exchange in Toronto that morning and proclaim it International Lobular Breast Cancer Awareness Day. So if you're interested in events, be sure and reach out to me and I'll let you know where the closest place near you to gather, get together either virtually or in person would be. And you can reach out to me at my email address, which is Kathleen Moss @protonmail. com.But moving on past the Lobular, I want to talk about the procedure that Avena had that is also a little bit less known these days or heard of these days, which is the TRAM flap procedure. Tram flap was one of the first kind of flap procedures that we saw used in plastic surgery setting to reform a breast or a breast like mound without using an interior prosthetic or implant.
It is using, like Avena said very well, is using both skin and muscle, and it is an outdated procedure at this point. You don't hear people offer it to patients anymore, and that's because the simple fact that it, It tended to show a lot of hernias because the muscle was misplaced or displaced and realigned, um, up north of the abdomen. A lot of folks had hernias down where that muscle was supposed to be holding things in. And so we have something called DIEP flap or DI-EP flap as they say in the UK and Australia which is, uh, a really good replacement for TRAM Flap. It is not involving that abdominal muscle. It is just using skin and fat from the abdomen instead.
So it's a similar procedure in that it uses skin and fat from the abdomen. It just doesn't use the muscle. And, uh, the words that are being stood for in the term DIEP Flap are deep as in D E E P, inferior epigastric perforator flap, which is just a way of saying the flap is, is kind of named for the abdominal blood vessel in that area.
So it's just named after the blood vessel that travels through that area. And we will have guests on that have had a DIEP flap. I will say that my impression is at this point, and I'm not very experienced in this area, but my impression from talking to friends that have had a DIEP flap is that it is just as involved as a TRAM flapâit is many hours long, um, and maybe a day or two recovery in the hospital afterwards. So it is not a light procedure by any means. It's not as easy as having an implant. or going flat. So that is kind of a light definition of TRAM versus DIEP. You'll hear the DIEP term these days where you would have heard the TRAM flap before DIEP came along.
Another term that Avena talked about was myofacial massage, and I think Avena did this term justice and talked about It's just a light form of massage that you can learn to do on yourself or you can go to a professional to do it on you. This is something like many other things in the breast cancer therapy world. It's kind of an elite offering. So if you go into the average breast cancer clinic and you say, I want myofascial massage, it's kind of like saying I want a nutritionist to help me with my breast cancer recovery and resistance to recurrence. They'll look at you like, âum, sorry, we don't offer that. That's a little beyond what we do here. We're just keeping people alive.â And really, I think the alternative/integrative community of medical professionals does this kind of work a lot better. Because after all, the conventional medical system is really just there to keep people alive. That's what they do best. And that's what they're doing when they do your mastectomy refer you to get your special bras or prosthetics afterwards. They're doing the bare minimum to keep you alive. You really have to go to the kind of alternative, or integrative, which is the term that I prefer to use or the community that I prefer to associate with myself to get these special, really deeply healing therapies like myofascial massage.
And most of us need those. Most of us need more than. You know, a wig for when we have chemo and the cold caps and things like that to reduce the, the nerve inflammation, most of us need recovery help and we don't get it. And I just want to acknowledge that's kind of an elite thing. That you have to have a lot of money or really good health insurance in order to be offered. And you kind of need to know how to seek it out too. So you might need to call around. I found out about my excellent massage and physical therapist by going to my local breast cancer support group. And that's kind of one of the best things I learned from that support group. So you'll learn from other patients and these days that's happening a lot on Facebook groups based on the kind of breast cancer that you had, whether it's lobular, ductal, or whether you went flat or had implants, you'll, you'll probably find a Facebook group that is matching the description of your experience and no matter what that is based on, you will find really good advice there, especially if it's a local group on where to go for things like myofascial massage and nutrition and acupuncture and physical therapy, even a lot of patients don't even know that they're eligible for physical therapy after mastectomy and that they might need it to keep their tissue loose and not get all bound up with scar tissue, but it's really essential. In my opinion, it's one of the most essential things. So, myofascial massage is another thing that is, I guess, kind of a luxury, but also semi essential just in terms of not having pain and not having irritation on into the later years after a mastectomy.
Now, getting into some of the more esoteric topics of discussion in Avina's interview, I just love that she touched on the concept of: âWhat did I do wrongâ and the solution to that, having a community of other loving women around you to affirm, âI did nothing wrong.â That is one of the most powerful things that we can talk about in the breast cancer community.
During breast cancer recovery is how much do you blame yourself? What do you think you did wrong? We all think we did something wrong. I mean, it's just natural, right? You kind of have to admit that before you can move on. But having other women around you that love themselves and either have forgiven themselves for what they think they did wrong, Or have talked themselves out of the fact that they did anything wrong, based on their beliefs.
That is the most healing thing psychologically that I've encountered myself. And I love that Avena brought it up in this way, that the first time she had a mastectomy, she was alone. She had no one to tell her, you did nothing wrong. She had no one to witness, you did nothing wrong. She went away with the impression, âI must have done something wrong. After all, I was in La Leche. I learned that if you breastfeed, you are safe from having breast cancer. It must have been something I did wrong because I did that right and that was a pretty major thing.â She was alone with those thoughts. And she points out that not being alone is a key way to get over those thoughts.
And I just have to repeat that over and over, shout it from the mountaintops. Do not be alone in this journey of recovery. Find others who have gotten past that self blame stage. And I see this all the time being a nutritionist. People are either clinging to me for what they can do right from now on, because they believe that what they ate was what they did wrong, or they run from me because I'm such a trigger, reminding them of what they did wrong, which was put a certain kind of food in their mouth, which in my opinion is totally false. You don't get cancer from putting a certain food in your mouth and you don't grow cancer from putting a certain food in your mouth. It's much bigger than that. Now it can play a role. It can have some influence in your momentum toward health to have a healthy diet for sure. And there are toxins, there are carcinogens in our foods. But that is not the only factor and it's not the main factor as far as science knows right now. And science is pretty advanced right now. So if you feel like it was you eating certain things that caused your cancer to grow or caused it in the first place, please be around other women that don't believe that belief.
Find other women that maybe have thought that in the past and have come away from that belief. Or make an appointment with me because I can tell you with scientific research, with solid, solid research, that that is just not true. Now, stress is a huge factor. That's a big one. Exercise is probably the most scientifically founded belief in terms of like if you were a couch potato for the 10 years or 20 years before you got cancer. You know, you might be able to forgive yourself for that because there is some research that that could move the needle. Chances are it's not anything that you did wrong. Cancer finds us total involuntary methods. It comes into our lives in ways that we cannot see or prevent in almost every case. And then the things that grow cancer are multifaceted.
So many different things, so many different viral infections that can get involved in autoimmunity that you might not know that you have and might not be able to know that you have. Heavy metal poisoning, you know, the list is endless. Nutrition and exercise and sleep, stress reduction, those are all part of it, but they all go together. There's not one that stands out as the single factor. And we're all doing the best we can, right? Like, we know about stress, and we know how to reduce it. We're all doing the best we can to reduce it. And we learn new techniques. And that's all you can do. So forgiving yourself for what you have done that was a little lazy, maybe, but also being around other women who are perfectly imperfect, just like you, who still love themselves and have forgiven themselves for whatever little bits of things they could have controlled. It's huge, huge. I can't say it enough.And then at the end of my conversation with Avena, we talked about the difference between a private clinic and a hospital imaging center and the kind of treatment that you get there both physically and just in terms of the quality of the machines, maybe, and spiritually in terms of how much the staff is overworked and underpaid and distracted, burned out, really, I mean, it's very, very likely that most of our hospital staff these days, especially after COVID is a little burned out and even Dr. Thurman in that private clinic that she and I go to is probably somewhat burned out, but because she's able to manage her hours and the number of minutes she spends with each patient herself, it is a huge difference walking into a private clinic that is much more expensive, usually out of network.
Usually I don't go to Dr. Thurman's clinic unless I've already met my out of pocket max for the year because it's so expensive I can't even pay the copay. It is an elite opportunity, no doubt about itâand yet... We'll talk more about this in the futureâand yet, isn't it worth it? Isn't my survival worth it? Isn't Avena's catching her cancer worth it? Absolutely. It is worth way more money than we are usually prepared to pay. To get that kind of outcome that Avena got, she went into her regular hospital system back in Chicago. They found nothing. A couple months later, she came in to a private clinic, and I don't know, I don't know, maybe it is just the machinery that they ordered that was more up to date, or maybe it was the skill of the practitioners there, but for whatever reason, they found it. And that made such a huge difference in Avena's survival, and it is worth paying a little extra for, I think, especially if you have that extra. Not to mention the spiritual aspect, like Avena was focusing on, are they caring? Do they have the capacity to care for me while they're caring for my body? It's a question we should be asking. And spending a little more time getting to the bottom of with each of our practitioners and voting with our feet, you know, like: âif they can't care for me. I'm out the door. I'm sorry. I'm not going to support and live the rest of my life knowing I'm supporting someone continuing in their career, treating patients like this.â
And we'll talk more about that in my next interview with my friend Miriam. She has something to say about that too. Most of us aren't in such a big hurry with breast cancer that we can't get a second opinion and Avena really Illustrated that well with her story. So those are the things that I wanted to recap for this episode.
I also want to tell you that after my interview with Avena, we chatted for about a half hour after I turned off the recorder and she told me that she was hoping to go to Burning Man this year. And I said, Oh, I'd love to go to Burning Man someday. I think that would be a really healing experience for me. And she said, âwell, do you want to go with me?â And I said, âhow are you getting tickets? It's just a couple months away, right?â I think it was less than two months away at that point. It was like a month and a half away. And she said, âwell, my, my son says that there's still tickets and he's really connected in the leadership and seems to be plenty of tickets this year. So if you want to go, we can take my van.â So in a couple of weeks, Avena and I are leaving for Burning Man. And, uh, I think. If you check out my Instagram at @a.breast.cancer.diary with little dots in between the words, you'll see some of the highlights of what happens there. Probably not until the first week of September, cause I won't have any wifi out in the desert, but I think that's going to be a really amazing experience for me and my body.
Just have that much more, um, self expression and self affirmation and community affirmation. It's going to be mostly community of strangers, which is weird. I don't have a lot of friends going and I have just a couple of acquaintances going, but, um, I'm already really, really excited and feeling good about my camp.
I'm connecting with them every day on WhatsApp and planning for all the things. So I think it's going to be a really, really amazing experience and I'll definitely do an episode that's just dedicated to my Burning Man experience. So stay tuned for that sometime. September, October, somewhere in there.
This fall will be a little bit less of a, um, kind of structured routine with the podcast. I think I'll get into some breast cancer walks and interviews that are live out in the community. A little bit less quiet audio and some kind of noisy settings, maybe. So we'll see how that goes, but I'm excited to shake it up a little bit this fall and because I am going on vacation this next week and also going to Burning Man this month after that, I may have a little bit of a delay in early September where I don't have an episode for one Sunday.
May be two Sundays. So if that happens, I will let you know for sure in advance. But that's why I'm having kind of an unexpected vacation at Burning Man. So wish me luck and Avena. Luck will become the best of friends while we're there, even though we hadn't met in person. We still haven't met in person.
Actually, we're meeting in person for the first time tomorrow. So that'll be really fun. But my next interview is with my friend Miriam up in Seattle, and she has a delightful story. She is a uniboober, a single breasted woman. And her story is mostly around, uh, getting a second opinion, following her intuition and navigating some really crazy assumptions about young breast cancer patients.
So stay tuned for that next Sunday and I'll talk to you then. -
My friend Avena had never told me her breast cancer story before this interview, so I'm hearing it fresh right along with you, and of course, her insights blew me away.
Transcript:
K:
Today's guest is my friend, Avena Ward. She has been in my life just a short time, and she's been a writing partner to me, mostly online. We met each other through a local writers group called Willamette Writers here in Northwest Oregon. Avena lives in Portland, and she is a two time breast cancer survivor with a long history of dealing with thoughts about breast cancer and recovery from breast cancer. She had a long space in between her two diagnoses. Her second breast cancer occurrence was a second primary breast cancer occurrence in the contra-lateral breast. she has an interesting story to tell, and I'm so glad to have her here with me today.
A:
Thank you, Kathleen, for inviting me. I'm, uh, I'm anxious to share my story with, uh, other, others who are approaching this for the first time.K:
So one of the questions that I wanted to ask you about your story is, is there anything that surprised you early on, especially around your first diagnosis? You were 42 years old, this was a few decades ago, so quite a while back, but what surprised you most at that time when you learned about your diagnosis?A:
I think the fact that I had cancer at all surprised me the most. At 42, um, I had been debating whether to have a, a first mammogram, but I had breastfed both of my children for extended periods of time, uh, my daughter for two years and my son for 14 months. I had been a card carrying La Leche League member and we talked a lot about how breastfeeding confers some resistance to breast cancer. So I just was shocked when one day in the shower, I put my hand on my breast and felt a lump. Uh, and so it took me a very long time to even bring that to the attention of a doctor.K:
How long?
A:
I think I found the lump in April and I didn't have imaging of it until July, and then I had a biopsy in August, so it was several months.
K:
How did you deal with the diagnosis itself?
A:Again, just shock. And, um, my mother had recently died of lung cancer, not breast cancer, but nine months before my surgery, mom had passed away. And I had experienced a period of, a long period of deep grief after losing her at the age of 63. And so I was just coming out of the grief darkness when I found my lump. And, I found that my family didn't have a lot of capacity for handling the shock either.
K:
Hmm. Did you take your time deciding what to do and who to let guide you down this path or was it a quick process?
A:I took my sweet time, yes, deciding what to do. And I guess it surprised me too, that I found in myself some really strong opinions about how I would proceed. And so part of that process was interviewing various surgeons. And at the time then the internet wasn't what it is now. You couldn't just go and type in breast cancer and get a whole bunch of information. But I went to the bookstore and I got Dr. Susan Love's breast book. And several other books on cancer, and read those, while I was interviewing these three surgeons.
And then, I think, I was surprised about how I felt that I wanted to be led to the solution in a sort of spiritual way, rather than necessarily by data. So, I took a sail out on Lake Michigan at the time with the last book, and when I closed the page, I allowed myself to be in meditation. And that's when the treatment path that I wanted to choose came to me. So actually, when I was visiting those surgeons, I already knew what I wanted to have happen.
K:And, can you describe what that was?
A:Yes, I had decided that even though my cancer was stage one, that I did not want to have chemo or radiation. And so, the solution was a mastectomyâa radical mastectomy, and when I went to the surgeons with that solution, no one argued with me. I was surprisedâmy family argued with me, but my, but my surgeon said, âno, I think that's a good idea.â
K:
Yes, and radical mastectomy is not something we see very much anymore. That includes all of the lymph nodes?
A:Exactly.
K:
Do you think that taking all the lymph nodes is what made them feel most comfortable with not doing chemo?A:
I think so. I think so. Yes. And of the three surgeons I interviewed, the third one was the oldest and had been doing breast mastectomies for the longest time. And he did the lymph node dissection as well, and said to me, âyou will live to be an old grandma.â So I took his prophecy to heart!K:
Was that here in the Portland area?
A:All of this was in Chicago. He was a surgeon at Rush Pres St. Luke's Hospital.
K:
So talk a little bit more about the stress that you were under from losing your mom and how you feel that's connected with, if it is connected with your diagnosis and the progression of your cancer.
A:Yeah. There is something about grief thatâs like being a drowning person and being taken under, I felt like I had been taken under by the grief of losing my mom at such a, a pivotal time in my mothering and in her life. She was 63. My parents had just retired. She loved life and she loved her grand-kids and I was looking forward to my children knowing my mother. And so there was this huge betrayal. A betrayal. You know, life is not fair. And my kids were six and ten when my mom died. And since, since that time and in my career as a pastor, I've met several women whose breast cancer diagnosis came on the heels of the death of their mothers. So there is something pretty significant to losing that primary connection of nurturing and then having something occur with the organs of our body that nurture.
K:Yeah. So tell me about the second occurrence. How much later was that and what did that look like?
A:
After my surgery the first time, within a year or two, I was able to kind of put that in the background and live life fully. Uh, I mentioned ministryâthe occurrence of the first cancer really also evoked in me a desire to change careers. So I chose ministry and went to seminary after the first occurrence, and I had a wonderful career of 20 years plus in ministry. And then I had retired in 2017 and moved to be near my daughter who had moved from Chicago to Portland. So, we relocated, and my daughter was a midwife in Portland, and so when I was establishing my care with doctors and, uh, other practitioners in the area, I relied on her to refer me to people. Before I left Chicago, I had had some interesting symptoms in that remaining breast. I had had some discharge from my nippleâclear, fluid, no pain, no blood. My primary care back then had cultured it. She had had me have the mammogram, the ultrasound, and eventually the MRI, none of which was conclusive for anything.
So I arrived in Portland with this sort of lingering thing in the background, and my daughter, the midwife, said, mom, if I'm gonna refer you to anybody, I'm gonna send you to Amy Thurman. She's the most thorough imaging specialist in the Portland area.
K:I know her too! That's, that's crazy because I was just thinking about her today.
A:Yeah?
And so I went to Amy's office and had my first mammogram and I expected to just skip away and they said, âum, we think you ought to come back and have an ultrasound.â So I said, "well, it's almost Thanksgiving. I think I'll go and do Thanksgiving things and come back." And I came back and the ultrasound was, âhmm, I think you better have a biopsy.â And every time I'm thinking to myself, okay, I can deal with this. And Dr. Thurman is incredibly thorough. So when she was doing the biopsy of the one spot that they had seen, With the ultrasound she said, âoh, there's another spot there and there's another spot there, so I'm gonna biopsy all of those,â and sure enough, there was a field of stage 1-B--both ductal and lobular.K:
Oh! So lobular showed up that earlyâin the biopsy?
A:Yes. Yes,
K:
Wow.A:
Mm hmm. So, again I went into myselfâI did consult with my Ob-GYN who said, âyou know, we want you to get this taken care of and we'll give you as much support as you like.â And I said âI like to interview surgeonsâ and she said âfine, I'll give you the names of severalâ and so I was very supported by that.
Dr. Thurman called me, my Ob-GYN kept calling me just to make sure I was okay, but I was doing my discernment process and I chose, again, to have a mastectomy. This time just with the sentinel node biopsy. And I interviewed a couple of surgeons, brought my daughter along, and my husband along to the appointments. And I chose the one who cried with us.
Again, I think I let my heart lead. They both seemed like very competent surgeons. Lots of great experience. Wonderfully knowledgeable. But the one who cried with us is the one I went with.K:
Beautiful. So I want to hear about the different procedures that you hadâhow did your body look after the first surgery, and then how does your body look now?A:
The first surgery I went with I found, of course, the surgeon I wanted to work with. And he said to me, âHave you heard that you could have reconstruction?â And I said, âOf course I have, but I don't, I don't want anything foreign in my body.â And he said, âOh, well, do you know about TRAM flap?â
I'm like, âWhat's that?â And he said, âOh, I have a plastic surgeon I work with who does wonderful work with TRAM flap. I'll introduce you to him and he can tell you more about it.â In the meantime, I, I did my reading on it. TRAM is short for transabdominal, abdominus recti-something. The M, I don't remember.
And âFLAPâ is that they take a piece of skin from your abdomen and graft it into the surgical site where they've removed the breast tissue. And so, it sounded perfect. They're using my body tissues. My abdominus recti which are the two long muscles that connect from your ribs down to your pubic bone.
They are detached and moved under the skin up to a point in your pectoralis muscle. And they become the blood supply for then fat and skin that are grafted from your abdomen. And they explained to me, because they were removing the abdominus recti, which kind of hold in your belly stuff, that they would put a piece of mesh across my abdomen at the same time, that this would be major surgery. It would be done at the time of the mastectomy and then it would be about six hours of surgery, but they felt at my age and physical condition that I was a good candidate for that. And it so happened, the day they were performing the surgery on me, the mastectomy team came in and did their work, but the people who were supposed to do all the TRAM flap work were, residents and they were called away to a serious accident. And so they left me on the operating table, open, while they took care of what they needed to take care of. And then came and operated on me later. So I was under anesthesia for 10 hours and no one informed my husband. And so he was a basket case. And having understood that I'd be under for maybe five or six hours, uh, he just did not know what was happening. And that also required a five day hospital stay back then, so that they could assess how the grafts were doing and make sure I didn't develop any infections. Pretty heavy duty, uh, surgery. Not, not something to wink at. I don't think I had gotten the full impact of what that would be. The recovery was very painful because of the amount of movement of things in my abdomen and then about six months after the graft was firmly in place, I went back for a procedure to try and create a little nipple on the grafted skin that formed the breast platform. And then they tattooed an areola on that.
It hasn't worked, that tattoo. It's faded on me twice. I've had it tattooed twice. It just fades. So, but I was very happy in spite of the long recovery from thatâI was very happy with the result and lived a very comfortable life, comfortable in my body, able to wear bathing suits and I even developed the ability to do sit ups after they had taken my abdominus recti, for the 25 years that I lived with that.
The second time around, I had the assessment again, but well, I had heard perhaps they could take tissue from my gluteus, my butt area and rebuild. But as the doctors described it, there was way too much uncertainty about whether they would be able to harvest enough tissue to match the previous reconstruction. And as I listened, I said, âyou know what? I can live with a flat chest and a prosthesis, thank you.â So that is how I live now. I have the reconstructed breast, and I have a chest wall, and a nice silicone prosthesis that works most of the year. It's pretty hot in the summer, but most of the year it's great.K:
How are the scars on your body after the TRAM flap procedure? Where are they?A:
Thank you. Thank you for asking. Of course, because they're harvesting a lot of stuff from the abdomen, I have a big smile on my lower abdomenâactually had to have my belly button re-rerouted. So they, they took the tissue from where my belly button originally attaches in the abdominus area and punched a new hole for the belly button to come out.
So there's the smile and the belly button. And then, on the breast itself, imagine an almond shape or an eye shaped incision with a graft of skin in there that came from my lower belly. Now, I had a lot of, uh, scarring from having babies on my lower belly. So now I have that tissue on my, on my breast.
So it isn't perfect. It is by no means perfect. I don't think anyone looking at me naked would think that it's, that it's a real breast. But it has functioned as such under clothes for a long time.K:
Were you pretty happy with it after you had the TRAM?A:
Absolutely.
Absolutely. Very happy with it.K:
So the skin showing on the outside where they created the nipple, that is skin that was transplantedA:
Yes. Yes. Um, after that surgery, about two, three months after the surgery, my doctor suggested, and I found a person who did myofacial massage. And they did a lot of work around the scar areas on the breast tissue, which was very helpful in getting back feeling. I actually can feel touch on the grafted skin. And she did a lot of work under my arm, where all the lymph nodes were removed as well. Because that can leave a lot of numbness, even painful, stretchy, stretchy fascia underneath there. So I would highly recommend to anyone to have some special massage after you have surgery cause I think it really helps restore feeling to the body.K:
Was that a physical therapist?A:
The person I saw was not a trained physical therapist. She was a myofacial massage specialist, but a physical therapist will do that. I know at Providence, where I had my surgery here, they have some people in their massage department, for cancer patients. I started to see someone after the second surgery, but then COVID locked everything down and I didn't have that opportunity.
K:Do you have feeling in most of the tissue nowadays? Do you have your, your nerves grown back or is it still somewhat numb?
A:
And on the original. Yes, I still have feeling it's, it's quite functional. And on the new surgery side, there's still some, I have done my own kind of massage along the scar lines, to, to restore, to restore feeling, and it's been what, three years now? Almost four years. So, I feel pretty good in that area.K:
And how do you feel the experience of being a young breast cancer survivor affected your vocation as a pastor and a mentor, spiritual mentor?A:
Thank you⊠Huh, let's see. Lots of, there are lots of little areas I would point to where that was, where the experience of having cancer so young really was helpful to me. I, there were several members of my congregation, younger women, who were diagnosed and I think I was able to be with them very comfortably. During that process and to help them to claim their power, the power of choice about treatment and the power to choose life. I think a diagnosis at such a young age and where it came in my life after this period of depression could have really sent me back into, uh, into a dark place. But I think my spiritual life and my, also I had a woman pastor at the time and she was there with me, and a women's spiritual group.
Uh, all of those things for support were really, really important, claiming parts of my spiritual tradition, to be able to lament and be angry and as well as hopeful and hopeful and happy. All those things were there and it was really important.K:
Your kids were at the age where they're verbal but not as body-self-conscious as like a tween would be. Do you feelâI mean it's never a good thing for a child to have to experience their parent in a trauma stateâbut do you feel like it was something that taught them something about you and something about life and was there some good came out of it for them?
A:That's a great question. My daughter is now 37 years old and she was six and seven during this ordeal with losing my mother and then with the breast cancer. It's very interesting, when I came home from the hospital after this major surgery I had several drain tubes still in my body tissues and I would dump them out in the sink and she wanted to watch that. She wanted to be part of that--help me with that. I think it helped to contribute to her vocational choice to be a medical practitioner. She is a midwife now.
But there was another aspect of it that wasn't so great. And that was that she developed a fear at a very deep level, a nonverbal level, that she would lose her mother. Because here I had been through this grief over losing my mother, and then I had cancer and this major surgery. And, and it was, it was not verbal for her. And she only really uncovered it after I retired, moved out to Portland to be near her, and she was trying to get pregnant, and it wasn't happening. And she finally, through the help of some spiritual counselors, uncovered this deep fear that becoming a mother is connected to loss. And, after she was able to bring that to the surface, she was able to get pregnant and now has two children. Boy, that was a very deep and long process.K:
Sure. And then she was able to help you identify the source of your disease in the end. That's amazing. She was able to lead you to that wise practitioner who could see more deeply and take more time, look more thoroughly. Do you feel like she gives herself a little credit for that in the end?A:
I think she does. You know, she, she feels a little ambivalent because she would love not to have had to do that. But yes, I think she has been able to touch into the part of her that is a healer herself and to be with other women in ways that I think are much deeper than than just a midwife who catches a baby.
K:
I want to go back to a couple of the wise women that you've mentionedâDr. Susan Love and her immense book on breast healthâare there any memorable bits and pieces of that book that are still with you that you want to mention just to inspire others to go and get that book?
A:I just think at the time, it was so helpful to have the possible treatments and survival statistics laid out in that book. That was so helpful to me because I think the first time you hear cancer, you hear, âOh, I'm going to die.â And obviously we all are, at some point, but there can be lots and lots of life between a cancer diagnosis and death.
And so I thought that was very helpful to see that breast cancer is not a death, a death notice. And to see lots ofâlots of different options laid out in her book. Those were the things I remember most.
K:The other wise woman that I'm thinking of, I don't want to skip over the opportunity to ask about the contrast in spirit--since you are a spiritual person--between that experience of looking for your second primary breast cancer occurrence in the kind of typical standard hospital setting, I'm assuming, and then going to a private clinic where you're getting a little bit more attention, or even just the, the atmosphere and the environment of those two, as well as Dr. Thurman's person herself. Can you describe a little more about what that contrast looked like for you?
A:
Mm hmm. Oh, let's see. There's a contrast for me between people who are competent intellectually and physically competent, and then there's people who are caring. Uh, and I think I, I referred earlier to, I chose the surgeon who cried. And, and both of the women that I was choosing between were incredibly competent. The other woman gave me lots of statistics and lots of reassurance but I think the emotional piece wasn't there. Amy Thurman, again, an incredibly competent, and the thing I felt from her was dedicationâlike a commitment that women should not die from this totally treatable disease. And if she can help it, she's gonna make sure that that, that your survival chances are great.
Um, but again, there was the care, the follow up call I got from her: âHow are you doing with this knowledge?â Um, that makes such a difference. I also, I, I want to bring in there, I had friends, several groups of women friends who made sure to create kind of a ritual for me to surround me with love and lay hands on me and say, you know, we're, we're going to be with you through this ordeal. And the power of feeling that love and support physically cannot be underestimated when you go into something like this. To feel lifted up by the energy of people who love you.
K:Hmm. Are you describing the first instance or the second instance?
A:
Uh, I think it was more the second time. The first time I, I was very private about my ordeal, I think. Almost maybe a little ashamed about being so young and having breast cancer. There is this thing about my body is betraying me. It's, it's not functioning. "What did I do wrong?" And I think that's a really important thing to, to look at. It's often what happens when we are, when something like this comes to us. And to, uh, to be able to say, you know, "I didn't do anything wrong"
It's really important. And the second time around to have, to allow myself to be surrounded by people who affirmed that. "You haven't done anything wrong."
K:Hmm. Hmm. Yeah. Just even being public with your diagnosis is one step towards saying, "I haven't done anything wrong because if the shame is overcoming you, then you have to be private about it.
A:
Right.
K:So you had just arrived in Portland and you already have that tight knit of a community around you to support? Was that a church related group?
A:
It wasn't. It wasn't. When I first came to Portland, um, as a retired pastor then, I was committed to creating opportunities for women to express their spiritual inclinations without a rubric of a church. And so I would talk about it to every woman I met: âI'm going to have a gathering at my house and we're going to just do spiritual things without talking about God.â
And so I used to put together a monthly gathering called the Women's Spirit Gathering. And I'd have about eight or ten women each time and we'd have some experience of going deeply inside and or outside and expressing, through poetry or just conversation or song or whateverâthose impulses.
And so the group of women that I gathered around me were from that. They were from everywhere. Yeah.K:
Hmm. Do you still meet with them?A:
I do sometimes. I had a gathering back in, um, March.
K:Well, it's really refreshing to learn more about your story here. I feel like so far you've heard a lot of my story because I write about breast cancer in our little writing circle, but you've been writing about family dynamics and adoption and racial tension within the family. And so I've heard that part of your life and I relate a lot to that as well because that's, that's definitely part of my life as well, but it's wonderful to hear your breast cancer story more publicly together, and to share that with others. I knew it would be lovely perspective that you would share and as is always the case, your situation is so unique and your story is beautiful. And I feel like even though it is a very, very unique story, it is, it is so relatable and I think it'll be valuable to listeners. So thank you so much for opening your heart in this way.
A:
You are so welcome.K:
Is there anything else that you wanted to talk about?A:
You know what I wanted to share? When I had this second surgery I wasn't any less scared than I had been the first time. Right on the, on the days before surgery, I, I got pretty, pretty scared and I mentioned it to my daughter and she said, well, mom, you know that you can-- when your surgical team is all there and you're all prepped for surgery, but before you go in--you can call a timeout and the team has to come and listen to you. I was like, âOh, really?â So, I had made up my mind that I would do that. I already had an IV in that was putting me in la la land, and they were about to take me under. But I said, âTimeout, I want to talk to you all." And what came out of my mouth was, âI want you to know that whatever you brought with you today, any pain, sorrow, discomfort, whatever, I want you to be able to let go of that now and be with me and I want to give you a blessing. That the good that you do to me will come back to you.â
And then they put me under.K:
Wow.
A:My surgeon, according to my husband and my daughter, she came out afterward to tell them that it was over and it was successful. And she said, "I've just never had that happen before where someone blessed me before the surgery." So it meant a lot to her and it meant a lot to me to be able to offer that to those folks. So know that you have a whole lot more power and control over what's happening than you might think.
K:
Yeah. What a wise daughter you have.A:
Sometimes I think she's older than I am.
K:
Wow. Well, thank you, Avena. It's been lovely to hear your story.A:
Thank you, Kathleen, for giving me the opportunity to share it.
-
This week I've decided to define some terms that came up in my interview with April Stearns last Sunday, for the sake of those new to breast cancer culture. Hope this is useful to you!
Transcript:
Welcome back. Today, I'm going to be doing another one of my reflection episodes. This is going to be purely a reflection on the last episode. So if you haven't heard my interview with April Stearns from last Sunday, this episode may not be quite as useful to you, but it could be. This episode and episodes like it, where I'm defining terms--really, it's probably just going to happen in the first six months of the podcast because I'll run out of terms to define--but it's really there for those of you who would like to stay in the cancer community and become advocates and ambassadors and allies. For folks who want to learn the terminology, I just want to take some time and help you to do that in a way that's a little bit more relational. So I decided a few weeks ago that I just wanted to take a little bit more time and go in between my interviews--go through some of the terms and definitions that folks don't know at the beginning of their cancer journey.
I'm assuming that most of my audience is at the beginning of your cancer journey. And that's what I'm getting on my YouTube following. I'm getting brand new folks who are diagnosed, so please indulge me in this. And if it's not useful to you, then absolutely skip or fast forward, and join me next week because I'll have another interview next week.
But I want to just talk about a multitude of definitions that came up in my interview with April Stearns because April is a really solid, grounded, very connected member of the breast cancer community. She referred to a lot of concepts that may not be easily identified or understandable to others who are brand new to it.
I'll go through them as quickly as I can, trying not to get off on too many rabbit trails here!
The first one is NED. And that is an abbreviation for "no evidence of disease." It is a term that we talk about once we are through treatment and mastectomy or lumpectomy when the cancer is apparently gone from our bodies. This is a term that we've used probably in the last 20 years, instead of the phrase that we used to use, which was "in remission," and I am not going to pretend to understand why we made that change, or even really the complexity of the difference of those two phrases. I think they're pretty similar, really. "No evidence of disease" acknowledges that there probably still is some remnant of disease in our bodies, either circulating or not circulating, just kind of laying dormant. We're learning more and more if you're following the science of breast cancer, that there is this concept of dormancy that is a little bit frightening. It's, it's implying that there is a cancer cell or some cancer cells that are kind of "hiding out" and not waking up and then maybe able to wake up at some point. And so I think "no evidence of disease" is a phrase that's used to acknowledge that fact, that there may be disease in a body, but it's not showing itself by symptoms or certainly not visibly in scans or blood markers.
Any kind of surveillance that we may be doing (which usually we're not doing after we've done all of our treatment or had our lumpectomy or mastectomy) but if we were to do, any kind of scans, if you do follow up mammograms, if you still have some breast tissue in there, then you're considered to be no evidence of disease until those scans show something.
And then there's a similar term called "no evidence of active disease," so you're adding an A in before the D, and that is usually used in reference to a metastatic patient, so someone with stage four cancer that is considered to be chronic. Active disease is kind of the default for a metastatic cancer patient, but many, many times you will have the active disease and just stop, either in response to treatment or randomly just stop growing, and just sit there and not grow anymore.
And that is kind of a signifier that there's a little bit of a respite time and you either continue with treatment or not continue with treatment, but there is a lack of growth happening. And so that is what is meant by no evidence of active disease as opposed to no evidence of disease.
The next term is survivorship. This is a very broad and vague term that I'm sure has many different definitions depending on who you're talking to. So I will not pretend to know a universal definition of it or present that to you here. But the most broad way I can describe it is just the period of time in your life after which you have had no evidence of disease after having breast cancer.
Survivorship is what follows breast cancer in a given patient's life. So it is all the time and all of the issues and quandaries and curiosities and frustrations, lifestyle modifications that come after breast cancer. When we're talking about survivorship, we're usually talking about a lifestyle change that happened to us that hasn't been reversed, hasn't been corrected or changed like medical menopause, like infertility, like, "How am I going to find out if I have breast cancer again when there's no good scan that can show me whether it's coming back until it's already back?"--those kinds of issues that come up after you've had breast cancer once and, you're just, you're, you're not back to normal yet. And that's Survivorship. Now, some women do go back to normal. Some women get cancer after they've hit menopause and they're not fertile anyway and they're not worried about recurrence and how they're going to track their likelihood of recurrence. And so those women are not concerned with survivorship. They don't identify as a survivor as strongly as the rest of us do.
So survivorship is more of a term you'll hear used in the young community of survivors of breast cancer, because the younger we are, the more our life is altered by breast cancer in a permanent and unforgettable and maybe unresolvable way. And so survivorship is a term that has some negativity associated with it.
It is not a term that we use. with a lightness or a sense of pride. Usually it is usually accompanied by grief. And that is my experience. That is not everyone's, but that is a loose definition just from my own perspective and experience of listening to other longer term survivors talk about their experience.
I'm still a very early survivor, but I'm, I'm not shying away from educating others. As an advocate, because I'm an educator by nature, number one, and I do believe that early on in your journey is when you're the best at educating others who are new. So. I'm certainly not the expert, but I'm willing to educate because I just see the value of it so, so much.
And speaking of young survivors, that's the next term that I wanted to define or attempt to define here today is young survivorship or the young survivors. You'll hear this referred to as more of a matter of pride and identity among folks who are diagnosed young with breast cancer. The word young is hard to define, and it definitely means different things to different people. I think that generally it is the case that. At least it's going to mean that you were in your 20s and 30s when you were diagnosed. And sometimes it will also include the next decade of being in your 40s when you were diagnosed. Almost always it's referring to the age of diagnosis and not your current age. But different organizations will have different parameters and boundaries around what they consider a young survivor. All I know is that Wildfire Magazine, which is the subject of our last interview, does define it by being in your 20s, 30s, or 40s when you were diagnosed and there's also a couple of other organizations that may define it differently. I have a local organization that does. It just says 20s and 30s, not 40s. There're some that go up to 45 and not 50. So it's a little bit loose and you, you kind of have to ask when you hear this, phrase in your community.
If you're wondering if you are included in the group, you just kind of have to ask cause it's not always laid out. It refers to not just those people that are diagnosed young, but all of those issues that are specific to a young survivor. So an early menopause, that fertility issue, some of the, the stronger reaction to a lack of estrogen in your body.
Even in menopause, we have some estrogen circulating that's created in the pituitary gland in the brain. Even if we don't have ovaries, there's some amount of estrogen that's circulating, and estrogen is such a healthy thing for our body. It's good for our heart. It's good for our brain. It's good for our skin and our vagina and all the things.
And so when you take it away completely, which is what these drugs do--not just the anti-estrogen drugs, the endocrine therapy drugs-- but also chemotherapy drugs can really strip you of your ability to circulate estrogen. And it is such a stark contrast when you're young and you're not gently evolving into it the way we were meant to as we go into perimenopause and then menopause.
So young survivors cling to each other because they're all experiencing these huge lifestyle and body transformation issues that are hard to resolve and really, I think they really induce a lot of anger and frustration in most of us. I do not count myself generally to be in that camp of young survivors because I was already really well through perimenopause when I got breast cancer or when it presented itself with symptoms. I was aware that it was in me, you know, 10 years prior when I was 40 and just entering perimenopause, but it didn't really come into my life in a way that needed to be addressed until I was almost 50. And so I'm right on the edge of being a young survivor and then not a young survivor. So hopefully that's helpful for folks. I definitely have a lot of empathy and interest in exploring the stories of young survivors on the podcast.
Similarly, there's a phrase that we referred to in the last interview called "Medical Menopause," and that is just referring to the fact that you went through menopause in an unnatural way because of medication that you took, either chemotherapy or endocrine therapy, which is an anti estrogen drug, either tamoxifen or an aromatase inhibitor like Letrozole and Anastrozole. So medical menopause is medically induced menopause that happens very suddenly, causes extreme symptoms of menopause and can be really, really hard to grapple with. It's often the main thing that is being discussed and that women are comparing notes around on Facebook groups, for example, or support groups.
So it is a huge topic of discussion. We will probably address it in at least half of the interviews that I sponsor here on the podcast. So it is something we will refer to a lot. And if you don't understand what that means, it could be confusing. It just means that you got menopause and usually irreversible menopause because of either the chemo that you took and or the endocrine therapy that you took because of your breast cancer.
There's a phrase that we used in the last interview called "Recurrence" and I think most people know what this means, but just in case you don't, I don't want to make any assumptions. Recurrence is when your cancer comes back. In any kind of cancer, it's always called recurrence, and recurrence could be referring to another primary instance of cancer. So another cancer that grew from a baby seed just like your first one did separately from your first one, maybe in a whole different breast or a whole different part of your breast. Or it could be in the same area coming from the same cells that were able to circulate somehow and hide out somewhere in your body.
So recurrence is just that general term we refer to as breast cancer coming back and there's a huge amount of fear of recurrence. And so the phrase "Fear of Recurrence" is a very, very common phrase in our vocabulary in the breast cancer community. And then we talked a little bit about this when I had Marquita on as a guest.
The, concept of HER2 positivity, April referred to this and, she said that she had estrogen receptor negative and progesterone receptor negative, but HER2 positive cancer. And that is just another combination of those three factors, those three markers that we talked about. in a former episode, but I just want to reflect a little bit more on HER2, because there were a couple of things I didn't say about it in my reflection on Marquita's interview.
And that is, HER2 status can really change. It can go back and forth, which is a little bit, maybe not as intuitive. Estrogen receptor status usually goes in the direction of negativity. We usually all start positive. And if you get metastatic occurrences and a lot of times that will go to negative status instead of positive status, where HER2 can go either direction it really can go can start negative which often does and it can go low or positive which is kind of on a gradient.
So it's it's kind of a adaptable marker and you cannot ever take it for granted that your her2 status is going to stay the same over time. So if you have metastatic cancer, especially, you want to kind of watch your HER2 status, see if it develops into positivity or low status and then if it does, you can treat it with a drug.
And there are a couple different drugs now that we treat it with and like April said, she was on Herceptin for 13 months, so a long time on it. But it is helpful because it gives us a way to treat that type of cancer and that marker.
And then we have a couple of terms that are more referring to the type of closure that April got, which was a flat closure.
And the two terms that we use, um, in the area of flat closure are "Aesthetic Flat Closure", and Goldilocks. Those are two terms that you may not be familiar with and they're really just referring to the way that either your breast surgeon or your plastic surgeon is closing you up after mastectomy if you're not getting an implant or a tram flap or diep flap procedure.
So I'm just going to do some kind of light definition of these terms and a little bit of background. So aesthetic flat closure is a medical term now. It was not a medical term, I think five years ago, but it is now considered to be normative in the medical community and the surgical community. And it was fought hard for by those advocates that are fighting for women to be offered the option to not reconstruct after breast cancer, after mastectomy.
And those that are very happy that they didn't get an implant and also those who did get implants, but who are, or were experiencing incidents of breast implant illness, which is a very common autoimmune disorder--a thing that happens when you put an implant into your body when you are prone to having autoimmune issues.
So there are a lot of women who are very passionate after having their implants explanted--that every woman who steps into a surgeon's office should be offered and, educated about the option of aesthetic flat closure. The reason it's called aesthetic flat closure is that traditionally, if women didn't get implants, they were left with extra skin that just, really was uncomfortable, ugly, just kind of flaps of skin hanging out just in case they ever wanted an implant or because maybe because insurance didn't pay for it to be made tight and made aesthetic.
But now insurance does pay for that. There are still a lot of women with extra skin and, a lot of times it will present in a way that it is interfering with movement and it is uncomfortable and, and a lot of women are very unhappy with that extra skin. So aesthetic flat closure is a way to ask for no extra skin--for your skin to be pulled tight against your body for there to be not extra skin "just in case" you decide someday that you want an implant.
And there's a little bit of a tricky quality to aesthetic flat closure because what I've noticed and I've been kind of entrenched in this debate and this community for a number of months now, I've noticed that people refer to aesthetic flat closure when they're talking about two different things--either aesthetic flat closure without Goldilocks, without extra skin underneath to pad what would have been a hollow spot... So right here, if you're watching me on YouTube, I'm holding the spot where I'm missing a lot of bulk and there's a hollow spot right here. And if I had had a Goldilocks on that side, I would have skin under there that would pad that and make me less hollow. Make me a little more perfectly flat, instead of concave.
And that would be called a Goldilocks. And sometimes a breast surgeon doesn't know how to do a Goldilocks. In fact, I think most of the time they don't. So you need a plastic surgeon to do that procedure. But a lot of times people will ask for a flat closure and what they mean is they want a Goldilocks. So they want actual flatness and we don't know until we take the breast tissue out how flat or how concave you would be. And so sometimes you kind of have to go into it with the allowance of hiring a plastic surgeon as part of your team to do that just in case you need that. And so flatness is not something you can really understand about yourself in advance of that surgery.... And sometimes you need a Goldilocks to even be flat so that you're not concave. Now, sometimes you have enough extra skin on your breast that you can also make yourself a mound. And that's what I did on my other side. So you can have a little bit of extra skin and you can have convexity, a tiny bit of a mound.
And that's also called a Goldilocks and that is not called aesthetic flat closure. So there's a little bit of a kind of overlap in a gray area and everybody's body's different. So you can't really predict very well what your aesthetic flat closure will be or what it will look like in the end. You can hypothesize and say what your ideal is, and that's what every surgeon wants you to do, but you can't really know what it's going to look like until you get there.
So, the main thing to know about Aesthetic Flat Closure is it's your right medically to ask for it and be given it. And that is really important because a lot of surgeons are biased in favor of providing extra skin, just in case, so leaving you with extra bulk "just in case" you "come to your senses" and want an implant and that is to, to a lot of us in the community is really offensive and condescending and medically wrong, unethical. So, I have a particular passion around this. And so I wanted to be sure and define it because it is kind of a confusing issue.
The other issue is a lot of us have never heard of aesthetic flat closure. And so we don't know about it when we go into mastectomy. We hear about it later and it's too late to ask for it at the time when we learn about it once we're in the breast cancer community. But it is something that we're hoping we will be able to get out a little bit sooner and reach people before they hit the surgery table and be able to talk to their surgeon about ahead of time as an option.
Hopefully surgeons will offer it as an option. That would be the best case scenario. So, and then Goldilocks, of course, we will save that topic for another episode. That's when you get a skin sparing mastectomy, and the skin is used to overlap itself underneath your breast mound, and depending on how much skin you have, you have a smaller or larger breast mound as a result.
So we also kind of talked about the term progression, and that's another really obvious term--doesn't need much explanation. It just means when your cancer is growing. Usually progression is a term that's used when you have metastatic breast cancer. And so progression just means it's progressing or it's growing. So that's another term that you'll hear used pretty often in metastatic circles.
I just want to say again that I am so thrilled that I was able to have April Stearns on so early in the history of this podcast, and if you are really hungry for more episodes, like what I've been offering, if this is the first breast cancer podcast that you found by some miracle, then please go and listen to The Burn because The Burn is, I feel like the closest thing to what I would like to emulate, in terms of providing stories, background, education, insight into all the different types of breast cancer experiences that are out there in a little bit more literary sense.
And one thing I didn't say in my last episode with it, the interview with April was that you are welcome to submit your essays. to Wildfire Magazine, even if you are not a professional writer, or even a very experienced writer, She is always looking for brand new writers to publish. And she is not a snob when it comes to publishing.
So if you have something to say, and you have something that needs to be shared. Um, and you write it and you feel like it's something that really communicates well about your breast cancer experience, then do send it April's way. There are different themes you want to submit it, you know, and ask for her to put it in the right magazine because different magazines have different subjects and themes.
But, or you can look up the subjects of the month and submit it just in time to be published. But either way, she's very willing to read and look at your. your essay or your poem. And I would love to personally read now that I have a subscription to the every other month wildfire magazine. I would love to read what you have to say myself. So I hope that you'll check it out and listen to The Burn in the meantime.
Next week I have a new interview with my friend Avena. She is a woman that I've known for about six months now, mostly online. We live pretty close to each other, but not close enough to hang out in person very often. But she is a veteran breast cancer survivor and she has had two different occurrences. She is an elder in my community and very wise woman. And I think what she has to share that is of value is around the topic of discernment. And she has a beautiful story wherein she tells about just fighting for her amount of time that she needed to make up her mind and do her research and find out what was best for her and kind of holding her doctors at bay in such a wise and careful and respectful way.
So I hope you'll tune in next Sunday and hear Avena's story. And I'm sure after that, the next week we will have another episode to kind of reflect on that. As I'm doing today, take care in the meantime!
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The work that April does at Wildfire Magazine has been one of my biggest comforts in breast cancer recovery, because the stories told by her writers provide comfort and solidarity. I see April as an activist on many levels but mostly for the themes that she chooses for her magazine. Themes like "Body: A Changing Landscape" and "Fertility" and "Identity and Aftermath". She is a wonderful curator of story. I'm so thrilled to be sharing a little more of hers on the podcast.
Wildfire Magazine is at: www.wildfirecommunity.org
April's other podcast interviews are here:
https://podcasts.apple.com/us/podcast/107-april-stearns-breast-cancer-survivor-and-founder/id1451816690?i=1000567583964
https://podcasts.apple.com/us/podcast/well-this-sucks/id1258071561
Transcript:
K:
Today's guest is April Stearns, founder and editor of Wildfire Magazine. April has been a hero of mine for over a year now, and she was one of the first people in the breast cancer community that I discovered who really brought a lot of solace and healing in my own life when I was feeling super alone and isolated, and just not sure if I could access people that would relate to my story.
So, April has a tradition of inviting breast cancer survivors to tell their stories in short essay form and she publishes them in a magazine that's a print and a digital magazine. It's called Wildfire Magazine. And she also has a podcast where the writers of those essays are reading their essays aloud on The Burn, which is the name of her podcast.
April has 12 years, no evidence of disease at this point. And she's been in the breast cancer community from the beginning. So she's a veteran and super connected. She's done a number of other podcast interviews and I will mention them down in the show notes for you to look at and listen to because she has an amazing story. And today I want to ask her some questions that haven't been covered by other interviews. And I'm hoping to dig a little bit deeper. So I'll just tell you at the offset that April's diagnosis was hormone receptor negative and HER2 positive and she was stage three and she did take Herceptin, which is that HER2 growth factor receptor drug for 13 months, right, April?A:
I did.K:
The first thing that I want to ask you about is what happened less than a year after you were done with treatment. Um, you had a family member that was also diagnosed with cancer and it sounds like that changed your story quite a bit and kind of had a big decision to make. Can you tell us, start out by telling us a little bit about that story?
A:
Yeah, absolutely. So my dad was diagnosed with cancer, and for my whole family, that was a real big surprise. It was obviously surprising that I was diagnosed when I was, but even though my dad wasâI think he was 61 when he was diagnosed. So even though he was more maybe in the age that we come to think of people being diagnosed with cancer, our family didn't have a history of cancer in that way. And so to first have me be diagnosed and then shortly thereafter him was a huge shock to our family. I think that the, the big thing was that once his diagnosis came, I knew immediately that I was going to be his caregiver. I didn't have any question about that, number one, because of my proximity to him compared to my brothers. I was just much closer to him. My mom had already passed away. It was obvious he was going to need care. And I had just been through it. You know, it felt like an opportunity to maybe give back to him some of the stuff that I had learned through my own experience. I was like a cancer baby. I had no idea what I didn't know yet, but I felt like I knew a lot and could help him with things like chemo side effects. The insurance stuff, you know, logistics around cooking, cleaning, just getting him where he needed to be and comfortable. And it felt really, really good. It suddenly felt like there was a reason why I had been diagnosed and I had a purpose to fulfill. And that was, I think, really helpful to my mental state at that time when I was just wondering, okay, what now?K:
I've heard you tell part of this story and it sounded like you had a big crossroads at that point when you make the decision to care for your dad.
A:
Yeah, I think I was really grappling with the âshould I stay in cancer land or notâ question. And prior to my diagnosis, you know, I didn't have any connection to cancer and I had a completely different career. I was a conference producer. So when I got to be his caregiver and I got to give back in that way and come face to face with how much I didn't know in my own survivorship and how much support I still needed, even though I was, you know, NED and supposedly released to the wild by my care team, being able to care for him in that way, like I said, it gave me so much purpose. It made me feel like, okay, I really do want to stay in cancer land and try to help others. It feels good to me. And, um, I wanted to do that anyway I could. I remember my therapist really kind of feeling like, Hmm, is this the right choice for you? Are you sure? And I just felt like I have never been more sure of anything. Like I really need to find a way to, to try to give back.
K:What was it like quitting your job at that point?
A:
You know, it ended up being easy. Um, my employer ended up not being as supportive the second time around when my dad's diagnosis came and really felt like, you know, we already did cancer with you. We already supported you through these 13 months, you know, from diagnosis to end of active treatment. He really wanted me to get back to quote unquote ânormal.â And I also felt really guilty for the fact that I was at diminished capacity. I didn't know that going in. I don't think anyone really knows the exhaustion and, you know, chemo brain and all of that stuff that kind of comes with going through treatment.
And so I was that person, um, in the chemo lounge on my computer, you know, trying so hard to meet deadlines and just keep working, working, working, working at nights, like all of it. And then when my dad's diagnosis came, I actually didn't ask to quit right away. I asked to go part time and that's when, you know, he threw up those, these big roadblocks for me and said, "you know, I don't think we can support you doing that. Isn't there anyone else?" And I was really turned off by that. It was offensive to me that he would ask that I had been working there for years and years. And so I just remember I worked from home. He was, you know, many States away and he kept me on the phone for over an hour. I was crying, I was pleading my case. And I remember my husband just coming and quietly opening my office door and mouthing to me, just hang up. You don't have to do this, just hang up. And so that's what I ended up doing. And, um, it ended up being the best thing. It's funny. I just recently in the last couple of years discovered a message from him on LinkedIn that I didn't even know was there from a year later asking me to come back and try it again. I'm actually kind of glad I didn't see it. Cause I probably. Would have, you know, I was a year into, you know, grieving my dad's passing, trying to figure out how to move forward. And I might've gone back at that point. And so I don't know, the universe saved me from that. And I didn't even know it wasâit was waiting there. Something else was calling to me. And so I did something else instead.K:
It sounds like your dad passed away pretty quickly.
A:
He did. He, it's interesting. He was, um, I think about five and a half months from diagnosis to passing. He had a few symptoms prior. So I would say, you know, he started being sick maybe in January of that year. That was 2014. And then he passed in September and was kind of eerie when I looked back and counted up how many days I literally got from him from diagnosis to his passing. And I literally spent a hundred days with him in that time. He wanted his weekends cancer free. So I didn't, I didn't go to his house on the weekends. He saved those for hiking and riding his Harley motorcycle and things like that. But Monday through Friday, eight to five, I was there with him and we got a hundred days and I think it was a, it was a real gift. I'm really glad I got to do that with him.K:
Yeah. Yeah. I can relate. I had the same choice with my mom and it was absolutely no, no contest. I was, I was there for her as much as I needed (she needed) and I'm so glad that I had that opportunity. So while you were caring for your dad, what were your thoughts about future employment or vocation? Were you already dreaming up the magazine or did that come later?
A:
You know, I don't think I really had the mental space in that time that I was caring for him, and my story was complicated a little bit by the fact that my mom, as I said, had passed away and she died seven years before my dad and my dad had not moved her things out or done any kind of work after she died to kind of settle that part of, of our childhood home. And so after my dad passed, I had a real big job on my hands to kind of settle the estate, clean out the house. It was a big house and my parents had lived there for the 31 years that they were married. And so I think I just dove into that as a way of kind of dealing with my grief. I just needed to keep busy.
And so it wasn't until the, it was about 18 months, I would say, until I was able to sell his house and have everything kind of buttoned up and put away. And it was in the last six months of that, that I think I started to really wonder what was next. And coincidentally, I ended up enrolling in a writing program, um, an expressive writing program in my town. It was an in-person thing, and I started going to it to deal with the grief of my dad passing, and also kind of coming face to face with my own survivorship and the survivor's guilt that I had around it, and the pain I was feeling that I didn't know was specific to not knowing anyone else diagnosed young. I didn't have any connection to the younger breast cancer community at that point. I think they were starting to form Facebook groups and maybe on Instagram, but social media was different, you know, 12 years ago, and I wasn't hooked into that. Perhaps I could have tried searching on something like Craigslist, but I just, it wasn't occurring to me that there might be a whole community out there because all through my experience of treatment, I saw no one else in my doctor's office or in the chemo lounge who was younger. So I think on some level, I literally thought I was the only one. And it was so painful to have questions around, you know, career, fertility, sex and intimacy, like all this stuff that was cropping up from like medical menopause and really feel like I had no one my age to turn to. I ended up in this writing class. Most of the other people in there were older women, like retirees who were now like wanting to write their memoirs. But there was one other young person I found out later she was about eight years younger than me. And she was dealing with breast cancer diagnosis. Hers was actually a recurrence, a metastatic recurrence. She had been originally diagnosed one year before me, also stage three. And then we both landed in this writing workshop. And it was so serendipitous, you know, I was going through this like grief and what next and I need community and there she wasâwe just became friends right away and it was through discussion with her that I realized: Number one, there's others out there. There has to be, if I just found one, you know, in my town. And number two, we could not stop comparing notes, texting questions. We were talking constantly. And so that was kind of where the magazine started to develop because I just thought she is a wealth of information to me. I could see that I was to her. And then I just pictured that, you know, blowing up across and I knew it wasn't going to be a book because I didn't have the answers. I didn't have anything to share. I just wanted to make a place where we could bring that collective information and help others feel less alone. And so that's kind of where it started to percolate. And also the fact that I have a journalism background and have been a writer and used writing as that healing tool. Thatâs also kind of why the magazine was the resource I wanted to create versus, you know, other resources that others have created.K:
It's such a beautiful piece of art like I'll show it for those that are watching on YouTube I'll show some of the covers in a minute, but I wanted to ask: It sounds like, just hearing your story, it sounds like your dad's vocation of being a firefighter was a big thing part of the name, at least, of Wildfire Magazine and, uh, the imagery that you kind of present at the beginning of each podcast episode is that the cycle of nature and the tendency for a forest to catch fire, um, naturally can be a healing, even though it's a devastating process. Um, how did that, can you tell the story of how that kind of, happened and, and how your dad's spirit is, is alive maybe in the work that you're doing now?A:
Yeah, absolutely. I love talking about this. Um, So I grew up with my dad being a volunteer fire, um, fighter in our area. I grew up in the Santa Cruz Mountains. Which was an area that was kind of unincorporated. And so in order to have fire protection, it was a volunteer led company. And it was something that my dad got involved with when he and my mom first bought their property up there, I think in 1975, maybe. And really soon after that, he became the chief of the volunteers. I think a little bit by default, cause you know, there wasn't a lot of hands on deck and he was passionate and he kind of grew with the role and learned it. So by day he was working at IBM down in Silicon Valley and by night and weekend, he was a volunteer fire fighter. And so I grew up in this culture of volunteerism and this culture of fire and there was a couple of big fire, um, you know, forest fires, wildfires as I was growing up. And so I saw the devastation. I saw how the community came together. And then I saw that process of regrowth afterward. And most recently in 2020, we had another forest fire here in the Santa Cruz area and so I'm constantly reminded of it again Just yesterday, in fact, my daughter and I were driving through what they call the burn scar, you know, which is like where the path of the fire is, and we live in an area where there's a diversity of trees, but the primary tree here is the redwoodâthe California redwood.
And I learned as a young person, and now I'm seeing it, you know, literally happening that the redwoods are very resilient to fire and in fact need fire to unlock their seeds. And so driving through the burn scar, you can see all these brand new baby redwoods sprouting up and also the redwoods themselvesâthe mature onesâlooked like they were devastated are completely fuzzed out with all this new growth that feels like they're going maybe through a new puberty which feels very like I can relate to that as you know in medical menopause, And so growing up in this culture of fire I just knew that there was two sides to that coin, you know, something very devastating happens, maybe loss of homes, loss of life potentially, what it can do for the forest can be really reinvigorating and can clear out all that brush and just make way for new life.
And so after my dad passed away and I was starting to think about doing this magazine. I was really coming face to face with two sides of that coin. You know, he had passed and I was still living and I was getting clarity on what mattered to me and the life that I wanted to live and how I wanted to get back. And it felt like that forest floor, you know, I was both sad and seeing myself reemerge as something new with space to kind of see that grow. And so that's the message of the magazine I wanted to give is this honoring of the destruction, the trauma, the pain. Asking that question, you know, what, what comes next after that? And what will you, what will you create? What will you hone in on? I think.I guess I want to say to it's a little bit different than the silver lining message. I think we get in cancer. I've been really resistant to that. Um, it feels a little like toxic positivity, which to me doesn't mean that we don't need positive images. We just also need the real and we need the honesty and the space to be honest. And I think that's also what that kind of two sides of the of the forest fire also can, or it brings to mind for me as part of that metaphor.
K:
Yeah. I love that the magazine is a tribute to your dad in that way too.A:
Me too. I'm, I'm honored to keep him alive in as many ways as I can. And he taught me so much about, you know, giving back and being part of community and taking leadership roles where possible. And, um, yeah, I, I know you'd be really proud of it and proud of me.K:
You talked a little bit about the need to compare notes, um, being in the younger generation. So Wildfire is featuring writers that have been diagnosed prior to age 50, um, even if they are currently over age 50. And I made it just under the line, but I do identify with that generation that you're talking about who needs to not sweep things under the rug, not to just kind of go about their own lives as if cancer didn't happen. And, so I wanted to ask you a personal question about your journey that, um, is particularly of interest to me because I have found very few women to talk to in my recovery process who chose to be asymmetrical or to have, um, a single breast to go forward in life as a single breasted woman.
Um, and so I really value your insight and your experience of 12 years being single breasted. I know I've heard you say in other interviews that you, there are elements to this that you did not expect and you didn't plan for and didn't even factor in. Uh, but I do want to hear kind of what your decision making process was. How did you know it was even an option? And how did you come to this as a way to go forward permanently?A:
Yeah, I, so it's interesting, you know, when I'm, um, doing writing workshops with people, I am always bringing this idea of, you know, what is your unique story? And what was the lens through which you saw your cancer experience? Versus, you know, leaning on the diagnosis details or the treatment course. And so the example that I use in my workshops is the fact that everything that came after my diagnosis was through this idea/lens of how to get back to parenting my daughter as quickly as possible. So my story starts with a lump found one night while breastfeeding my daughter. I had to wean very quickly, almost overnight. I was in chemo within two weeks of my diagnosis. Like things moved incredibly fast partially because of the pathology, you know, the HER2, it was growing very fast. It was already in my lymph nodes at that point. Um, and the tumor was already seven centimeters also. And so I had a course of treatment that had me having chemo first. Some people have a mastectomy first. I had chemo first as a way of seeing, you know, if the chemo would even be effective on it was a good way for us to test, but also to shrink it so that I might have surgery choices. But for me, you know, living for six months, seven months in chemo with that tumor in my breast where I could feel it every day made me feel pretty certain that right off the bat I knew I wanted to have a mastectomy. It just felt like it was so big, so aggressive. It just for me personally didn't feel like a lumpectomy was going to be the right choice. Had it stayed as large, also, there wouldn't have been much breast material to work with. Um, you know, if theyâd have had to cut around that, I got lucky and had a complete pathological response to my chemo, which was lucky. I don't know why or how, you know, sometimes there's just stories like that in the cancer space. And I got to be one of those. Um, but even still, I decided to have a mastectomy. And the reason I decided to have a single mastectomy was kind of twofold. Number one, I wanted to preserve another or a breast in case I might breastfeed again, and I had hopes of having another child and number two, I wanted to preserve sensation. And that was something that I kind of came to over those six months as I kind of learned more about, I guess, my body and thinking about sex and intimacy after mastectomy. That wasn't the main thing, but it was there kind of in the back of my mind. And then in terms of my decision not to reconstruct, um, with breast mount surgery, but rather to do aesthetic flat closure, that was purely: âHow fast can I get back to my child? How can I minimize surgeries?â And so somewhere in that, I saw a poster that was a beautiful image of a woman who was one-breasted. She was flat on one side and had a breast on the other. She had her arms outstretched. She, I think was standing on top of a mountain. Like she, it looked like she was a tree herself. It was such a powerful image. And my husband and I both saw it in our local cancer center. And it was just like, Oh, I want that. Like, whatever that is, I'll do that. Um, and so then when I went and met with my surgeon and, and said that that's what I wanted, he just said, okay. He didn't ask my husband if it was okay with himâyou know, some of the stories I've heard since, of people having to fight for flat closure. I had none of that. He just said, okay, no problem. And I came out of surgery completely flat, no skin sparing or anything against my wishes. And, um, and, I have no regrets about it. I did wear a prosthetic breast form for about five years and it was really big. As you mentioned, I'm double D on one side now and flat on the other side. So I had this, um, they called it an equalizer and I think it was about a pound and a half, two pounds. And I stuffed my bra with it every single day, on hot days, even camping. Um, and I didn't know I was going to do that. I thought actually I didn't need it.
And then it seemed that my daughter needed something to help her with that transition to cancer treatment and after cancer. She by then was a little bit older, you know, talking and it turned out she thought I still had cancer because my breast hadn't grown back. so I felt like I needed something to kind of bridge that for her. She loved my breast form so much. She used to carry it around. She named it pork. No idea. Why? Um, but she would like slap it and pat it and sometimes I couldn't find it and she's like, Oh, it's cooking. Like, I don't know. It became this whole other entity in our relationship, but it really, I think, helped both of us. And I ended up developing a dependency on it. And then after five years of faithful service, it kind of exploded one day in my breast, or in my bra rather. And I tried to tape it together with duct tape. I did everything I could to preserve that thing. Um, and finally it was gone and I had to throw it out and go half flat while I waited to get another prescription for another breast form.
And in that time I realized I was okay with being out in the world half flat and I kind of liked my body better and it was a really interesting thing to realize I felt sexier with one breast than I ever had with two and I think I was just ready by that point and so now it's been six, seven years that I've been living half flat.
And occasionally I'll wonder, you know, how I'm coming across in the world. And if people are noticing, but number one, I don't think I really care that much anymore. Number two, if I do care, I kind of like that my body is, you know, advocating for what, what a breast cancer experience can look like and leave, you know, a body looking like. And number three, I actually don't think people really notice that much. I think we think they're noticing things and they probably aren't. So I'm I'm fine with it. I know for some people, my body represents a worst case scenario, you know, having such a large breast and then the flat side. But, um, I think the cool thing is there's so many different surgery types and different people and we can find the right one for us. And I'm just really glad there's options.K:
Yeah, I am so amazed that you had that photo up in your cancer center. That is so amazing to me because you just don't see that kind of imagery presented very often in the breast cancer community at large. So it just, it makes me so happy to hear that that was there, and that you responded, yes please,A:
Right? I know. Well, you know, what was also really interesting is, um, so even though we didn't have a family history of cancer, my grandmother did have metastatic breast cancer when I was young. It was after I had my flat closure surgery that I realized that she had a flat chest. But it was not something our family talked about, that was not part of, I think, her generation to be so open, you know, about either cancer or bodies and things like that. But it was funny, I realized, when I put the pieces together after the fact that her shirt fell the way my shirt fell. I remember kind of getting a little glimpse, you know, maybe inside her shirt when she would hug me or something and things looked a little different and suddenly I could piece together what I was seeing. I remember, um, kind of what it felt like to hug her too. And I didn't know as a young person that it was very different, but it was, you know, it was stored somewhere. And so I had that kind of recognition after my own. And that also kind of felt like a nice connection to her in that way.
K:
Yeah. I bet it's somehow, sub-consciously affects your confidence level too, to have had an elder in your family, someone that you trusted and valued that didn't have any shame about going around one breasted. She had, obviously she wasn't using a prostheticâat least part of the time.A:
I mean, I wish that, you know, knowing what I know now, I've got a million questions for her. I don't know, you know, what, how she made her decisions or anything like that, or if she had a breast form, but it's also influenced me to be more open. My daughter knows obviously everything, but it's kind of, I think, why I'm comfortable being out in the world when breasted too, because maybe someone will have that recognition at some point, you know, when they need it too.K:
Yes, yeah, I definitely have those moments myself, like when I go to the gym, that's when my clothes are the tightest and I am always somewhat self conscious. I have a much smaller Goldilocks breast now on my right side instead of a double D like I had before. Um, so, much less self conscious, but I go back and forth between pride and loving my body just for how it is and being kind of an ambassador of truth: âThis is breast cancer and it's okay. I'm not, you know, Iâm not self loathing after breast cancer.â And then, you know, that kind of awkwardness, just like, am I appearing to be attention seeking here? Or, you know, do you have those moments? Like, do you ever have those doubts or feelings?A:
You know, it's interesting because my relationship with my body has gone so many different directions since, you know, being young. And I remember dressing for cleavage and I remember, you know, that I liked how that looked and I liked that attention. I haven't felt that same feeling since being, you know, Asymmetrical, but I do have a swimsuit that has a little, like, cutout in the front, kind of where cleavage would be, and it's my most, like, obvious, you know, that I'm one breasted, I feel like and I feel really sexy when I wear it. Maybe that attention seeking still in there, you know?K:
Mm hmm. Yeah, I'm just starting to get to where I can admit that I like to wear asymmetric clothing because it accentuates my asymmetry. Like I would have never even thought to admit that before, but yeah, it's true. It's kind of an adventure learning about your new body.A:
I know, and I really appreciate that, you know, we're starting to see bras and different things that are designed for asymmetry that don't necessarilyâit's, it's hard to like describe, but it's almost like it accentuates it or it celebrates that this is the difference in the body instead of what I used to do which was just take the padding out of one side and it was like, okay, it's obviously a bra for two breasts, but it works ok, versus this is a bra that's specifically made for someone like me. And that feels really good to celebrate, you know, it's not just a body that's working. It's great. It's beautiful. Just that way.K:
Yeah, I felt so honored when, I think it was Eno Eco is the name of the brand that just sent me a one breasted bathing suit top/bra and I didn't get it until It arrived and I saw it in physical form and I just felt so honored honored, like, Oh, yeah, this is for me. And I matter too. And my body is a part of the collective of acceptable bodies in the world. And they made this for me. So yeah, there's something really affirming. And, and the most strong urge for me is, has been just to be honest, like the first time I took that big prosthetic out of my bra and went out in public, I felt so much more myself and authentic and I wanted to keep being that way. So that's been such an amazing process and to be able to live in a time when it's, it's safe to try that out is, is really a blessing.A:
I think so, too. It's interesting what you said about feeling more yourself, because I had that experience, but kind of in a reverse kind of way, with, umâso sex and intimacy have been a big part of my survivorship challenges, I guess, you know, things I've needed to overcome and I realized at some point that the fact that I was wearing my breast form out in the world meant I was kind of passing as having like a normal body, you know, ânormalâ body out in the world and then in my home in my bedroom, I would feel kind of different, other, strange... and I wanted to flip the script on that. I didn't want to feel way at home, I wanted to feel either⊠I don't know that I wanted to feel abnormal out in the world, but I at least wanted to feel normal at home and go and, you know, removing that breast form really helped me to do that.K:
Yeah, it sounds like it was kind of a surprising, fortunate happenstance that you, your breast form exploded and you couldn't get another one right away. And you learned this thing about yourself. And now it's been like, what, seven years that you've been going without?A:
It's so funny. I mean, I think that there's probably a lot of examples of that, that we can find acceptance when we're kind of pushed out of our comfort zone a little bit and then realize it's not even just acceptance. It's, oh, this isâthis is better than, than it was before. I'm not just making do.K:
Yeah. So you talked earlier about the idea of cancer and silver linings. And I wanted to ask you, because I know you've heard a lot of people tell theirâthe gifts that they've gotten from cancer as well as the things that make them really angry. And I know you're not shy about publishing the angry pieces and I really appreciate that. So I've been wanting to ask you those two things about your story. Like what is the best gift and then what is the thing that makes you the most frustrated or angry, yourself?A:
Yeah. I really like this question. I do think there's both sides to the whole thing. I think for me, kind of the best thing that has come out of my diagnosis is the entrepreneurship and the opportunity to create a resource that I needed. I didn't know I had it in me, you know, to found a business, to lead a team of others who've also been diagnosed with breast cancer and to form a community around something. It's funny because in my previous life as a conference producer, the place I was working when my dad was diagnosed, I was really good at that job too. And I had a coworker, we were the two who worked mostly together and she was nudging me for a couple of years. Like we could do this, like we could go out on our own and do this. And I remember at the time feeling like, I don't want that risk. Like, I, I don't know. That just sounds like a lot of sleepless nights, you know, making sure that the numbers meet and blah, blah, blah. And then fast forward and all of a sudden here I am being like, I'm ready to take on that risk. It feels worth it to me, it feels important to me. I think I can do it. And I knew so little if, in fact, if someone had told me all the work that went into publishing a magazine in the cost, I probably would have been terrified and not done it. So I'm thank you, whoever didn't tell me that, like I needed to not know. I just had to go blindly into it. I think that that's been such a gift to learn that about myself, that I had it in me to, to do this. I get so much joy out of the work and the community. And, um, getting to teach people how to use expressive writing as a healing tool is such an honor. And so, yeah, I don't know. Maybe I would have had another illness at some point and somehow this would have come out. Maybe it wasn't meant to, but I'm really grateful for the opportunity to learn new things about myself and have this, this be a part of my life.And then in terms of like the, the bad side, I think it's kind of connected because I have now lost so many people over the years. I founded the magazine and the writing community in end of 2015 launched the first magazine, 2016. In those years, I recently counted up, I believe I've lost close to 65 people to metastatic breast cancer. And I feel every single one, you know, because these are whole people that are now missing from our, our world, our universe, and the solace that I get is that if they came through wildfire, then I have their words.
You know, I, either I've published a story of theirs in the magazine, or I've heard them read their story and share their story in the, in the workshops and love. That I've had the privilege of amplifying their voice, amplifying their story, maybe helping them find a story they didn't know they had that legacy lives on.
Those echoes just continue to live. And so I hate, hate, hate, hate that people are still dying of this disease. And I I love science. I love that science has progressed and I also am angry that it hasn't progressed further and that we're still dealing with this, and so, yeah, it's, it's both those things.K:
Thank you. I really see you as an activist, um, in your work and I know it's kind of behind the scenes, but you are choosing to publish themed, you know, magazine themes, every other month that are very daring, like on metastatic breast cancer. That is very daring in my view. Personally, when I started listening to The Burn, I couldn't listen to the episodes about metastatic breast cancer because I was so fearful of recurrence and I didn't want to add to my anxiety.
But then when my mom was diagnosed with metastatic breast cancer, I clung to those episodes and they've been the most precious to me. And I realized that's not going to be the case for every breast cancer survivor. They, people can't always handle hearing about the worst case scenario. Um, and some people don't benefit from that, but I so appreciate your willingness to go there in spite of the pain and the awkwardness, that people associate with hearing these very, very sad and tragic stories.
There's also the bright side of seeing that people are resilient enough to deal with the sadness and the lack of control over their life and their death. I just, I really want to thank you for your being bold and courageous and publishing those stories, even though they really scare people like me early on. And then also other topics like fertility that just need more airtime. Um, like I know yourself 12 years ago, nobody mentioned to you that you could maybe save some eggs and now that's more normative, but probably not as normative as it should be still.A:
Yeah. Yeah. Yeah. I just want to circle back for a second on the metastatic stories. You know, I think that one of the things that really helped me, in my own fear around, you know, developing metastatic disease. And, you know, I still, I don't consider myself by any chance, um, scott-free or anything, even though I've been living 12 years NED, I just know that we don't know, you know, what will happen until we pass away from something else perhaps. But I found that it was almost, it was almost helping to just read and face something that was scary to me because partially because, you know, the, my breast cancer bestie who I met in that writing group so long ago, um, when I met her, she had metastatic disease, she is still here and living. She has been living with us for 10 years now. And I found that she's so much more than her diagnosis, so much more than metastatic breast cancer. And so part of my inspiration for publishing metastatic stories is also to educate the rest of the breast cancer community that, you know, life isn't over upon the day of a diagnosis. There is so much living that happens between the lines. And I love drawing that out, you know, and helping people to both experience that realization themselves, you know, as a person living with metastatic disease or just living with, you know, in the aftermath of a cancer diagnosis to realize, âOh, I'm still here. I'm still living. I still, you know, I'm learning things about myself and changing.â and then I do hear from people with metastatic disease who read the metastatic stories and get so much hope out of them. And I think one of the things the world doesn't know about cancer stories is that they are so hopeful even when, you know, quote unquote, it's the, the worst case scenario or something so scary. I think our media, our society tends to not want to face those stories, but in that they're not seeing how much living is really happening in there and how beautiful. You know, even my own dad and his metastatic, diagnosis. He, he did so much living in those six months and learned so much about himself. He really, really embraced this idea of legacy and passed things down to me and my brothers. And I was so glad that he didn't give up the day, you know, the day of that diagnosis.K:
Yeah. Yeah. That's a story that I wanna tell on the podcast so badly. I wanna tell the diversity of situations in which someone can be living with metastatic breast cancer. Cause I think we're so shy when we meet someone with Mets, like you just don't want to ask about all the ins and outs, but there are a few people out there that are willing to tell you and it takes away so much of the fear and the stories that you've published have taken away the fear for so many, I think.
So thank you for that.A:
Yeah. Absolutely, and to your point too, you know, I think there's so much to survivorship, know, whether you're early stage or stage four diagnosed, thereâs so much nuance in there that we really have to cut and dice and slice, you know, all these different things. And one of my favorite questions to ask people as a counter to that classic, like, âYou're okay now, though, right? Like, you look so good. You're great now, right?â Instead, I feel like we need to be asking, âWhat is your biggest challenge in survivorship? You know, what is survivorship like for you?â
Because, again, it goes back to that idea of like, What is my life like, and what is that lens through which I'm looking at my whole experience, you know, and is it a parenting with cancer experience? Is it parenting with metastatic cancer or maybe something else, you know, that's a working, um, career lens, or maybe it's a financial lens, or maybe it's, you know, very body focused. Like there's so many different variations on this experience. So, yeah, I love having different themes for the magazine to really dig into all those different types of stories and all around the world too, you know, it's very different if you're diagnosed in an area that has a lot more stigma maybe around the experience and maybe you don't have as much community versus someone, um, you know, here in California, Santa Cruz, I'm, I feel very open and free with my cancer story.
K:
Yeah, so you touched on some of the themes of Welfare Magazine. I have, for those watching on YouTube, I have, um, the latest issue. This is the body issue, which comes out every year, annually. Um, so six additions every year, and body is one that you stick with annually and the others, a lot of them change quite a bit.
You also have a metastatic one every year, is that right?A:
I do. Those are the two issues that I do every year. Um, they each kind of have a little sub theme, so we can really like dig into some different, um, aspects of them. But yes, in June, I always publish the body issue. And in October, I always publish the metastatic issue.K:
Okay. Thank you. And then my entry level, um, introduction to Wildfire Magazine in print was this compilation that you put out about, I think, a year ago, Igniting the Fire Within, Stories of Healing, Hope and Humor. This is a little bit less art heavy than your typical wildfire magazine. It's really just mostly words, but it's broken down instead of topically, like the magazines are, it's broken down by age group.
So you have Is it starting with twenties or thirties? I can't remember.A:
Starting with 20s. Yep. So 20s, 30s, 40s.K:
Okay. So for those who want to get kind of a highlight and, um, maybe the every other month subscription is a little bit too indulgent for you. This is a really good way to start with this compilation, um, which you can get on welfare community.org. You can also find April's free pop up writing workshops.
She does a lot of free workshops. I've done a couple of those and really enjoyed it. And then this October she's starting a couple of more intensive writing experiences. One is kind of an in person retreat experience, which is kind of a new thing. And Iâm super bummed I can't make it. I'm actually going to be in the Bay Area, but for other things and won't be able to go to it.
But maybe the next one. Um, and then she's also doing her âFire Startersâ. It's a 6 months project, um, kind of a mentoring and continual feedback in honing a larger body of work or a larger memoir. And that goes from this October to next March. And of course, you can get The Burn for free. You can listen to all of the essays that have been read aloud by the authors themselves as a really good first taste. And like I said, that was just so healing and so timely for me. I highly recommend if you're a podcast listener to go to The Burn. Then I want to mention too, that April has been interviewed on a few other podcasts. I think I first learned about you on the Breast Friends, which is a local Oregon podcast that's no longer being recorded, but there's still lots of episodes being aired. And let's see. The other one was Dr. Teplinsky's That was a little bit more recent and a really good interview with you about the magazine itself and some of your Your other stories. So I think that's called interlude with Dr. Eleanora Teplinsky. And I'll, I'll link to these, um, in the show notes for today.Thank you, April, for joining me. I'm so honored to have you as one of my first guests. You were at the top of my list of people to invite on. And I hope that I can have you again, because I know there are so many stories that you have to tell.
A:
Thank you. It's an honor. I'm so thrilled that you decided to do this podcast. I think it's going to help lots and lots of people. So, thank you for letting me be a part of it.K:
Yeah, yeah, and someday we'll meet in person, but thanks so much for all that you're doing for our community in the meantime.A:
Absolutely. Thank you so much. -
This is a follow up podcast episode to last week's in which I spoke to my friend Marquita Bass about her triple negative breast cancer diagnosis. I felt there was a little more to say on this subject before moving on.
Links:
In the podcast, I promised to provide resources in the show notes for learning more about personalized medicine in breast cancer. Here are my favorite youtube video on this topic: https://youtu.be/QS-1HZr-trg?si=A10SR7cE20tCMYPB
I mentioned that there are a lot of emerging biomarkers now, and here's a link to a LBCA youtube video that lists them and the various tests that measure them. Biggest lists are at minutes 23 and 36 of this video: https://youtu.be/2MOWI06uRak?si=3jXTllFN0aUNZh26
Dr. Jason Fungâs book Cancer Code is here: https://www.powells.com/book/-9780062894007/7-0?gad_source=1&gclid=CjwKCAjwnK60BhA9EiwAmpHZwzwK6tUBXHYzhsKfvRd8XEDocBN6k0R3GwnXwxxmRT0kIuHhXZUTRxoCdiUQAvD_BwE
A brief video overview by Dr. Liz OâRiordan of the current state of affairs for TNBC: https://youtu.be/9NK_ZNoYGPM?si=xTRO6u_5xX9jV0DW
Transcript:
Today's episode is going to be more educational in nature. I'm making a decision at this point in the podcast to be a little more intentional in my mission to help to educate and not just entertain. I feel like when I started this journey as a new breast cancer survivor and I would log in and listen to talks or podcasts or stories, a lot of stuff went over my head and I don't want to be that kind of podcast that just assumes people are going to go and find the right resources and educate themselves.
I think for me, when I heard terms like even âMetastaticâ or âTriple Negative,â the first few times I heard them, I was overwhelmed and I didn't feel like I could add those things to my plate. And I think if I had had someone that could explain them really simply and briefly, that it would have really helped me at the early part of my process to help define how much just very similar we all are.
It's not that we're that different with different diagnoses. I think mostly we're the same and it's important to know that at the offset because then you don't feel isolated from other groups of survivors. So because of all that, I'm deciding to do a little halt, a little pause, and to stop and talk about some of the terms and definitions and ideas that Marquita and I briefly referred to in my last episode. So if you haven't heard that episode with Marquita, it's a lengthy one, but it's a really important one talking about triple negative breast cancer, I know most of my listeners and fans out there, at least from my YouTube following are brand new to this community.
And, you know, necessarily soâthere are people looking for information who need it desperately at the very beginning. And I don't want to be part of that elitist club of advocates who know everything and just kind of do that name dropping thing that's so irritating and requires you to go out and do your own research and find out what these things are that I'm talking about. So that's what this episode and maybe even a lot of future episodes will be for. I'm going to do some solo episodes just to keep folks a little bit more updated on some of the things we talk about in the interview episodes.So the things I want to talk about today are TNBC which is the abbreviated name that we give triple negative breast cancer, what it is and the risks that it poses and the ways that it makes it hard to live with this diagnosis⊠and talk a little bit about some of the lifestyle references that Marquita made about her decisions to change her diet and stress, levels as a way of treating potential recurrence... talk a little bit about our relationships with our oncologist because Marquita found such a wonderful one and yet she only had him for a few years. And then Iâm going to talk a little bit about testing and I'm just going to show you some resources in the show notes about testing, because that could be a real rabbit hole that I don't want to go down because I'm not the expert. But the testing options, especially genomic testing, is becoming much more available, much more affordable, and there are so many elements that you can pursue in this area. It's kind of exciting.
So let's start with talking about triple negative and what makes it unique. Because I think that this is really important to know the really basic stuff. So triple negative is referring to the three markers. The first two are hormone status, hormone receptor status, progesterone and estrogen. Estrogen being the key treatable one at this point in time. And then the third marker is referring to something called HER2, which is a protein, which also is at the cellular level. It's sitting on the cell, and it's a growth factor as well. I'm not going to go into growth factors. It's a real area of interest of mine, so it's hard not to. But I will refer you to my favorite kind of biology of cancer user handbook for patients, which is a cancer, not a breast cancer book, but it's briefâit's only 300 pages long and it's made for a patient to understand. It's made for an educated patient to understand. So, you know, if you've had some college science, you'll be able to understand it. Really, really important book, I think, for most cancer survivors to just look at your disease and understand it well and look at what you might be looking into more in the future if it comes back⊠And that is the book called Cancer Code by Jason Fung. Dr. Jason Fung just came out in 2020. It's very up to date. All very recent evidence, um, he shares a lot of scientific information, very much backed by science. It is not a hippy dippy, alternative book in any sense of the word. Although, Dr. Jason Fung is respected by integrative doctors as well as regular medical doctors. So he's right there in the middle of that integrative bridge or connection, which I love. So yeah, get that book if you're interested in the chapter on growth factors, because I think it's a really interesting thing to know about and we'll talk about it more in the podcast, I'm sure.
But that HER2 factor, that HER2 marker is the third part of that trio that makes up triple negative. And the reason triple negative is so remarkable and it is talked about with kind of drama and hushed tones is that it is a little more rare. It is only 15 percent of breast cancer survivors that have triple negative. Very muchâpretty much exactly the same amount as lobular patientsâalthough only one percent of triple negative patients are Lobular patients. So they are mostly Ductal patients. You know, almost all of them are Ductal, in, in terms of the type of cancer.And as Marquita referred to, it is true that triple negative is a multifaceted disease. It is a subtype of breast cancer and it has its own subtypes. So, not every breast cancer survivor who is triple negative is going to have the same things true about their cancer. So, it is easy to make things black and white and categorize. And that is where we get in trouble with triple negative because not all of them are the same. Some of them are very aggressive. Some of them are not aggressive at all. Some of them are very treatable with chemo, as Marquita was saying, and, you know, a small minority of them are not as treatable with chemo. So it is a lot of gray area.
It is not as scary as it is made out to be, especially in the early stages. As you can see by Marquita's testimony in her life, she has not been oppressed by this disease since her diagnosis. with it 12 years ago, because she had a non aggressive type and it was very early stage when she caught it. So she is among some of the, the most successful stories that you'll hear about TNBC.
But another part of a successful story you'll hear about TNBC is that nowadays we treat it with adjuvant chemotherapy. So the clinicians will discuss taking chemo before having any kind of surgery, whether it's lumpectomy or mastectomy. And that wasn't always the caseâprobably not when Marquita was diagnosed 12 years ago.
And because of that, we've been able to see evidence that chemo really does work very well with most TNBC patients. In fact, many of them get a pathological complete response, which means the chemo made their tumor disappear before they even got surgery. And when you wait to have surgery after chemo, you could see how effective the chemo was very, very well because you get to see the area of the breast tissue that the tumor used to live in and you can look at it under a microscope and see just how gone that cancer is. And TNBC is one of the cancersâthe breast cancer typesâthat does respond really well in most cases to chemotherapy. And that's why it was so stunning to me to hear Marquita's story that she had declined chemo. When you hear her tell her story, if you haven't heard it yet, you'll understand that it does make sense because like I said, hers was non aggressive and it was very early stage. It was very small. It was the size of an M& M, a small M& M, not a peanut M& M! So she had a lot of reasons to take that risk and to be that guinea pig for the rest of us to see that it is possible for a TNBC client to live 12 years without any chemo, which I think is just a really remarkable story. And she did it with the blessing of her oncologist, by the way.
So talking a little bit about the side effects of chemo, I think this is a topic that gets very overlooked and I'm so glad that Marquita brings it up. It is a very controversial. and very emotional topic. None of us want to take chemo. Many of us have to. There's just no choice. Two out of three of her doctors, well, three out of three of her doctors did recommend chemo and only one out of the three doctors, medical oncologists that she spoke to was willing to take her no for an answer and actually partnered with her in that decision making process, which I just think was the most beautiful part of her story.
He was not afraid of her not taking chemo. In fact, he could see the value of her regret matrix. He presented her with a regret matrix, which I just loved, loved that part of her story. And that allowed her to make her decision with firmness and conviction and him to support her in that. And the reality is that chemo is not without costs. It has a lot of side effects. You know, just that the trauma of having poisoned yourself voluntarily, that takes a lot of recovery psychologically. And also the fact that you get a lot of support through chemo because you're going in and you're seeing clinicians, nurses, support people every day in some cases, every week in other cases. And then that support system drops off and that's traumatic too. So there's a lot of psychological issues with chemo and we'll talk more about that in the future, but I just want to be able to talk freely about some of these things that we take for granted about chemo thatâespecially with triple negativeâit's always assumed to be a good idea to take chemo.
And the science says that it isn't always necessary. And I'm just so excited that Marquita's written that down in her book. And people are reading that story because that part of the gray area needs to be shown light on a little bit more than it is.So talking a little bit about some of the lifestyle stuff that came up with Marquita: I'm a nutritionist. I became a nutritionist after my first two cancer scares. I had polyps in my uterus. I had, you know, a shadow in my left breast ten years ago or more maybe 11 now and I became a nutritionist because I thought, like many patients do, that nutrition is one of the things that can save you from cancer. Now in hindsight, I see that it is one of the lesser thingsâit's definitely a factor for sureâbut I think that exercise is much stronger in terms of evidenceâscientific evidenceâto prevent and keep cancer at bay once you've had it.
So, nutrition is, is a messy thing, even though I do guide people through their own particular nutrition plans on a weekly basis. I get a little bit scared when I hear patients saying that their doctor recommended a vegan or low fat diet. I just want to clarify that that is not scientifically proven and I, as a nutritionist who's recovering from cancer, do not have a low fat diet at all, and I do not have a vegan diet, especially because of my age. I'm entering menopause. People who are entering menopause, they need protein big time, and you can't get protein very well from non animal sources. So we do need to be careful about the quality of our protein. I will give that caveat.But then we talked about stress, and this is an area where Marquita and I do agree, and her doctor and I do agree. I think stress is becoming more and more scientifically validated as a huge, huge factor in the risk of any kind of cancer. Because, we have seen scientifically that stress, chronic stress especially, creates inflammation in the body and inflammation is a habitat where cancer thrives.
So, stress, yes, probably a little bit more plausible as, something to work on, something to change your stress management. Just your busyness, just frantic-ness. As women especially, we tend to get pretty frantic, especially in certain times of our lives when we're caring for either children or elders.
So yeah, I've worked a ton on that myself and I think it's made a huge difference. So that's my little lifestyle commentary. There will be much more. I love to talk about population based studies, and I will talk about one thing with triple negative on that level.
I forgot to say a couple of things about triple negative that It hits some vulnerable populations the most. It hits African American and Hispanic communities or Latina communities the most, unfortunately, which are under-served by medical systems generally already. Also it is very common that it strikes younger women. And, so, younger women are more vulnerable because they have, you know, longer to live with this cancer once they're hit with it the first time. And then, thirdly, it is mostly coming toward women who have the BRCA mutation. So the mutation in their genetics that makes them less strong. BRCA is a strengthening gene. It is giving you more ammunition against cancer. So when you have a BRCA mutation, it is taking away from that strength. So BRCA is not a bad thing, but people with the mutation have a weakness. People with the BRCA mutation generally get triple negative breast cancer a little more often. Which can be a, a hopeful thing in the end because we've discovered a couple of drugs that can treat triple negative patients. Now that we know about BRCA, we can treat them with a BRCA therapy. So PARP inhibitors is the one main way that that happens. And then there's a new drug that can actually be given to triple negative patients when they have aggressive types of cancer. And that's called Keytruda. It does have a lot of side effects. It is a very new drug. It is something we're still learning about.
But the lifestyle factor I wanted to talk about with regard to triple negative or TNBC patients is an environmental toxin called formaldehyde. There has been one really compelling population study. When I say population study, it means it's not a super conclusive or causal-proof kind of a study, but it does show that it's likely that, formaldehyde is a factor in a lot of triple negative patients.
So a lot of them were probably exposed during the seventies and eighties when formaldehyde was used in building supplies. And that's with a couple of studies. main one was in Taiwan. So also could be a combination of formaldehyde and other toxins. People in Taiwan eat a lot of rice and rice can have a lot of metalo-estrogens. So, it could be a kind of a stacking of effects of environmental toxins in that case. But I thought that was interesting and I thought I would share that.
Marquita and I talked about tests and breast cancer tests and the main one that we were referring to were, were, uh, a kind of test called genomic tests. And these are genetic tests, but they are different than the kind of genetic testing that we do as a breast cancer patient to find out if we have BRCA, for example.
So genetic testing is looking at the genes that you've inherited from your parents and the genes that you carry all your life in all your cells. They're like a blueprint that you carry around and your cells just replicate that genetic pattern. Genomic testing is something that you're looking at in a particular part of your body, or in this case, a tumor that has been growing in your body.
And genomic testing is a little more complex because the characteristics of your tumor in terms of the mutations and the genes can change. And so genomic testing is a little bit harder to get right, and the science is still being developed for it. It's not perfect with breast cancer.
But there are some tools that we can viably use now, and I think that they show a lot of promise and I'm excited to tell people about them. The one that Marquita and I talked about specifically was Signatera, and that is one that requires a large enough tumor sample that you can kind of study the genes in your tumor.
I myself did not have a large enough tumor sample to do Signatera, and I was heartbroken to find that out because I really wanted to be that guinea pig. Marquita and I talked about some of the tricky parts of testing, especially genomic testing, which allow you to find out a little more about your tumor and the cells in your blood that are floating around and then getting killed by your immune system, which are called circulating tumor cells. Finding out a little bit too much... it can be anxiety producing.
And most patients probably, if they were fully educated about these tests, would choose not to, to get the test run because they can be really worrying. You can find out that you've got a high level of tumor count one day in your blood, and maybe the next day it would be low, and so you got worried for nothing. And after all, the immune system is blasting those little cells out of your bloodstream anyway, so they're not really that threatening. So it takes a lot of education to get a patient well informed enough to really appreciate what some of these tests will provide. And for that reason, they are usually only run on later stage or metastatic patients, and they're very useful in that case. They can really inform the choice of therapies, the drugs that you use to eradicate those later stage cancers, or at least tame them and get them down. So, for an early stage patient like myself or Marquita to take a Signatera test is a little different because we're not dealing with active, invasive, or threatening cancer.
Our surgery got that taken care of. So we don't really need to be monitoring but some of us want to, and since Signatera is a test that has been shown to be viable and reliable, and clinicians really respect it, it's kind of tempting to find out what's going on in there. And so Marquita and I both are, are kind of on that edge, and I think she's deciding whether she's going to take it. Maybe I'll have her back to talk about whether she did take the test.Tumor markers are the other test that she and I talked about. I asked her if she was getting tumor markers run and she said no. And I am because I've insisted on it and that's because I saw how high my mom's tumor markers were right before she died of metastatic breast cancer. And I was pretty mad that nobody had run those tumor markers in the last couple of years to see that she was getting metastatic breast cancer. So that's kind of my, my reasoning for insisting on getting tumor markers. It's the same thingâit can provide a lot of anxiety unnecessarily if they are getting a little high, but they're not super high, what do you do? There's nothing you can do, like Marquita was saying.
So I still want that information because my mom didn't get it and she could have known sooner that she was dying if she had gotten it. And so I'm a little bit biased in favor of tumor markers. I also have seen that because I have Lobular, or I did have Lobular cancer, I've seen Lobular patients talk about having no indication that their Lobular cancer was coming back until they got a tumor marker panel run, because Lobular cancer is impossible to see in most scanning machines and modalities.
So it's a little bit different for us Lobular patients-- maybe we could benefit a little more from tumor markers. Again, these are things you want to ask your own clinician about. You probably won't find the first few clinicians that you talk to are willing to run Signatera because they just don't want to produce that anxiety for their clients. But I did find one, and I think there are two in Portland that have been running Signatera for their clients very willingly. So it's just kind of a personality requirement. I think they have to put themselves in our shoes and if they would want that anxietyâbecause they're that inquisitive. It tends to be the scientists, the researchers that are that inquisitive, and so that would be the first place that I would go if you're interested in Signatera. And for different insurance companies, you may not have it covered because it is a pretty new test. But tumor markers are cheap and they're usually covered.
I'm going to leave a list of other tests below because there are so many now and I have a really good talk from the Lobular Breast Cancer Alliance that there are two different researchers that are talking about some of the tests that they use. Again, it's mostly for later stage cancers, very, very useful for stage four.
And that's how I want to end this podcast discussion, talking about just how similar Marquita and I are in the end, even though I had Lobular, she had Ductal, I had triple positiveâI had HER2 low, so it's kind of triple positiveâand she had triple negative. So you'd think on first glance that she and I were the opposites, weâre so different.
But what really makes the difference is how large your tumor is and how fast growing it is and whether or not it was eradicated in surgery. And that's really the main thing that makes us similar. And that's what puts us on this, such a similar path. Yes, we had different types of breast cancer with different markers but until you reach stage four, triple negative is not as scary as you might think, because usually we get it with the chemo and certainly with the surgery, if not with the chemo, and usually women live nice long lives after that, especially when they've had the adjuvant chemotherapy that works really well.
And so after your first, your stage one occurrence, if you don't have a recurrence in the first five years, then you can really kind of rest easy, and it's just when you hit those later stages and you really need the drugs to treat this type of cancer that it becomes like less of a menu to choose from in terms of the drugs. There are still a menu of drugs. There's still chemos. There's that Keytruda. There's the PARP inhibitors for BRCA, but it's less.
And so a triple negative patient is only different from a triple positive patient in those later stages of cancer. And that's another thing you just don't hear or see. We really have so much more in common across the board than we often acknowledge in our conversations and in our culture. And so I just, I kind of wanted to shine some light on that and the fact that both Marquita and I were very safe not doing chemo.
She didn't have the option to do any Aromatase (inhibitors) or Tamoxifen because her cancer wouldn't have responded to that, but I didn't get offered those either because my cancer was so tame because it was so small and early stage. But at a later stage, if both Marquita and I were to recur, we would look very different in terms of the drugs that we would take or be offered. And that's what makes triple negative more essentially different or foreign from the 85% of us that have somewhat positivity in those three markers. We'll have many, many more markers. It's not just always going to be three markers. Things are adapting and changing and always developing in cancer research.
And so these three markers are not the only ones that are going to land on the scene. Already, there are many more that are kind of minor factors. So TNBC is not the extent of what makes us different either or the same. The more advanced our tumors become, the longer they live, the more mutated they become and more different we areâin the makeup of our tumors, tooâso it is a lot of gray area and not very much black and white. But that's okay because that makes us more relatable to each other and supportable to each other. And that's what I love. I love to learn how we can relate. There aren't that many walls up between us after all.
So next week I'm going to be interviewing April Stearns from Wildfire Magazine, a huge, huge, inspiration to me and the thing that really got me through the roughest time after breast cancer diagnosis and surgery when I was pretty isolated. So can't wait to talk to April about her story, and I will talk to you then. -
This episode gets into some murky medical territory so it's important to note that your doctor is the only expert on whether chemo is for you. Personalized cancer treatment is still being tested in clinical trials at this time, but Marquita is one example among triple negative (TNBC) early stage breast cancer patients who might have taken chemo and is still apparently cancer free 12 years later and has no regrets. Being an early stage survivor means that her choice to decline chemo was a less risky one than it would be for a later stage patient, but she has a lot to say about possible regrets with chemo in the context of TNBC.
This episode covers:
Marquita's initial diagnosis of stage one TNBC and her discovery that TNBC has subtypes
Marquita's family history of TNBC and experience with family and friends who had it
Marquita's discovery of Robin Roberts' post-chemo diagnosis with MDS
Marquita's oncologist search, and a "regret matrix"
Marquita's lifestyle efforts to avoid recurrence
Marquita's book, Orange is the New Black
Marquita's advocacy on behalf of the Metastatic Breast Cancer Access to Care Act
For more about the new era of personalized medicine, here are some great YouTube videos to check out:
https://youtu.be/vn1AHrCfrAE?si=qr1-cv5kGN7SmW4l Brief and simple summary of genomic testing
https://youtu.be/QS-1HZr-trg?si=xMr99Jg7DijLQrDf A new trial in Australia testing a less chemo and radiation heavy approach in breast cancer patients
https://youtu.be/lxDuw4qQ6iA?si=chx1-BS1GII1P7_2 Dana Farberâs Genomic Testing Program
https://youtu.be/It1DQkNbofg?si=Pjl8TCCMVTcPCHtd Metastatic Breast Cancer and Personalized Med
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Today I'm reflecting on how far I've come since my first mastectomy--the one in which I was denied flatness. Thanks for listening as I process my own anger and regret and allow them to officially become softer.
Transcript:
Welcome back. Today in episode three of the podcast, I just want to reflect a little bit on some of the themes that came out in episode two, where I interviewed my guest, Michaela Raes, the founder of Breast Cancer Confidence. Her project is based in imagery and photography, and it is all about confidence and body image after mastectomy and lumpectomy. And if you didn't catch that episode, be sure and listen to it after you listen to this one. I just want to talk about some of the main themes in my own journey, being around body reclamation and self image and body acceptance after my own botched mastectomy.
Last November I made a YouTube video about the idea of flat denial. There's hundreds of women that ask to go flat after a mastectomy and are not granted that wish by their surgeon for many reasons--either the surgeon is in denial themselves about the ability of a woman to not want breasts or they're just not listening or they care more about their ability to express themselves in their "art" of reconstruction than they do about the woman and her ideas of what she might want.
And of course, I was very upset. I was very angry for many months--well over a year--probably a year and a half after my first mastectomy, wherein my surgeon denied me the flatness that I asked for and the smoothness that I asked for. But I've started to stop being angry now and talking to Michaela last week was really helpful in seeing the progress that I've made.
Also looking at the pictures that I had taken with her and Jolana here in the Portland area with some of my flat friends--I've got those pictures set as my screensaver on my computer now, and I've been looking at them a lot over the last few weeks and realizing that, you know, having a bunch of ladies with their shirts off and having no breasts and our arms around each other and being joyful together and celebrating our bodies is not something that most people would take naturally or lightly or, you know, most people would have to kind of think twice or think a long time to kind of process how that's even possible. I know I would have before I went through it.
I think I have a lot more compassion now toward my surgeon, who not only denied me my flatness once, but actually twice. On my revision, which was a month after the mastectomy, I had margins that needed to be cleared. And I asked her again to take out the extra skin and the wrinkles, in my skin and make it flat and she seemed to be listening to me, but she again left a lump very intentionally wanting to make that into a nipple. I thought back in November when I made that YouTube video that I would be at some point sending a letter to my insurance company and asking them to defund her or demand the money that she was paid to be paid back to them because she was not granting me the informed consent or any kind of consent over my process and my body.
And I was really upset about that. And now I'm so much more understanding and patient, I guess, with the process that this, this work, this activism that I'm doing needs to take time and allow for some movement and growth in other people's lives. Certainly in the surgeons that are trained to do aesthetic plastic surgery are trained to make breasts better overall, instead of taking them away.
Of course there's a lot of change that needs to happen in this area and so I, I kind of think myself, would I rather get that surgeon's attention by complaining and threatening to remove money, which probably wouldn't happen in the end, especially with all this time that's passed--it's been a year and three quarters since the surgery. Or would I rather be able to strengthen myself and come out of my anger and into a place of compassion and write her a letter myself with an openness of heart and vulnerability and honesty and express to her how important it is for people like me to be heard by her in the future.
I don't know that I would ever expect a reply from her, but I kind of think that might get her attention in a more effective way than making threats or filing complaints would. And so now I'm kind of thinking that that's where I'm going to land in this process of reclamation of my body. I have reclaimed my body from that spirit of theft, of, you know, just ignoring what I had to say, which is a huge injury in itself for a medical professional, but I'd like to go further and really affect change for her and for other surgeons like her by continuing to tell my story and talking to Michaela I think really helped me to do that. There was a point in the interview with Michaela where she said, you know, you might lose the choice that you thought you had.
And that's definitely something that happened to me. I thought going into that first mastectomy that I was going to have a Goldilocks procedure, which would leave me with a small, tiny little mound. And then I told that surgeon that if I couldn't for some reason have that procedure that I wanted to be as flat and smooth as possible.
I didn't know the term aesthetic flat closure at that time. It was too early in my research on these kinds of things. I didn't discover that term until later. And that's a huge regret for me. It's not something I could have controlled probably, but I do wish that I had more time to look into that. I was more concerned about the cancer than I was the closure and spending all of my free time researching the cancer itself because that was more important.
So, I can't do anything about the regret of not learning about aesthetic flat closure. And I imagine that's probably not top on most women's minds. And that's why it's so important that we educate surgeons about this new preference. I think women historically had a preference to go flat because they just wanted to be done with it and not bother with extra surgeries.
These days, I think the assumption is by most surgeons that women are going to want implants because they're paid for by insurance now, and they're easily done in a matter of hours and it makes them a lot of money. So it's kind of the obvious choice from a surgeon's perspective, but a lot of younger women especially nowadays just really want their health to be the priority and they don't want to bother with extra long surgeries and surgeries every 10 years to replace implants.
So this isn't going away. This is a preference that is going to be here and I just have to wonder what the best way to educate surgeons would be, considering that they have all the power and don't really need to listen to us once they've done surgery on us. How can we go back to them and teach them in a way that they'll understand and listen?
And how can we vote with our dollars and go and support surgeons that have listened to other women? These are questions that definitely aren't resolved for me. But they are a little bit more tangible and a little bit more within reach because my anger has slowly been diffusing over the last few months and I just... I'm so grateful that I got to have a chance to talk to Michaela and see that about myself.
And so I'm just wondering if anyone else out there is having these kinds of thoughts. Did you have a really icky experience with your surgeon? And are you afraid to go back and talk to them about that and educate them so that they're better informed for women that they serve in the future, assuming that they do want to be better--that they are not necessarily ego maniacs or narcissists, which I'm sure some surgeons are, but we don't want to assume that they are. I certainly don't. I would rather assume that they want to learn, but it takes a lot of courage to write those letters and speak those words. Because the fear is that you won't be heard again. At least that's a fear for me. So this is just me writing in my diary asking for accountability around this.
It's a process and it's definitely not at its end yet. But I wanted to share just some of my thoughts after talking to Michaela. It is a mystery to me still how much I can love and accept my body and that I actually appreciate it more than I did when it was fully whole, still breasted, still that kind of stereotypical woman shape. But I really appreciate it for what it's brought me through, even though I think that some of the photos that I post on Instagram of it, are pretty repulsive to other women and certainly to most men who can't even put themselves in my shoes. I understand that and I accept that, but I do still want to push that envelope and challenge--not necessarily the average woman, but challenge the average breast cancer survivor to think about the beauty of this option and the option to advocate for every possible choice after mastectomy, not just implants, as Michaela was saying in the interview last week.
So that's all I've got for today, and I hope that you'll stay tuned for my next interview, which is coming up on Sunday with my friend Marquita talking about some unexpected changes in her treatment plan that happened 12 years ago when she was diagnosed with triple negative breast cancer.
I'll talk to you then.
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Whether you're flat or reconstructed, if you've had a mastectomy you have scars on your chest, and the natural tendency for most of us is to hide them. What happens when we encounter someone who isn't as interested in hiding? For me, it's been magic each time a person shows a lack of shame to those around her, and that's all Michaela is doing with her nonprofit, The Breast Cancer Confidence Project, starting with herself. This is one episode you'll want to watch on youtube because the photos Michaela shared with me tell her story best. Listen in to hear Michaela's story of the transition from fear to confidence in her post-mastectomy story of healing through photography. Find full show notes at www.abreastcancerdiary.com by going to this link. Breast Cancer Confidence can be found most easily on facebook and instagram by the same name. Stay tuned there to hear more about the upcoming photo book, You Are Whole, to be published later this year.
Episode Transcript:
K:
Hey, everybody, this is Kathleen Moss and you're listening to a breast cancer diary. Today's guest is Michaela Raes president and co founder of Breast Cancer Confidence Project. She lives in the Finger Lakes region of New York, and she was one of the first women that I considered a role model to myself in the area of body positivity, uh, she did this by showing up on Instagram and sharing photographs of her body as it was changing after mastectomy.
And this was before I had ever found a community of my own, or an example of sharing this in real life, sharing one's body after breast cancer. And so she made a profound impression on me. And then after that, after seeing those pictures, I learned that she was doing this for other women in the world and spreading the message of body positivity after mastectomy through the Breast Cancer Confidence Project.
And just about a month ago, I got to meet Michaela in person. She traveled all the way to the West Coast here in Portland, where I live, and she did a photo shoot with her co founder. Jolana, and I met both of them and it was just such an honor to experience their project in person. So, today, I just want to ask Michaela some personal questions about her breast cancer journey and what brought her to this work of body positivity and in the realm of specifically of photography.
So Michaela you shared these photos of yourself, these really stark, but also very beautiful and tastefully done photos of yourself in studio, studio quality photos, um, with the world and showed the different phases of your reconstruction just so beautifully. What inspired you to start this work with your own body and, and to do this for the rest of us?
M:
Well, first of all, I want to say, thank you for having me here. It was great meeting you last month as well. So it's really an honor to be here and discussing this with you. I would say really what led me to want to start this whole process was my. my internal struggles that I had with my body image being diagnosed at the age of 28.
I was very young. I was recently divorced. I was newly single. And I was already feeling insecure about myself and my body. And then you get this completely unexpected news that you have breast cancer. And that just. totally rocks everything that you thought you knew about your body, right?
And so then that also brought up a lot of questions for me at the time. What will my body look like? Will I ever feel comfortable in my body? Will I ever feel confident and sexy in my body? Well, will I ever feel comfortable around a man in my body after all of this? And then there was a lot of fear and a lot of panic.
And I feel like a lot of what I found out there, I guess, didn't. Didn't really provide me that reassurance. All of the images that I would see looking on Google online, you know, at doctor's offices, it was just this very cold clinical representation of these are your options of what you'll look like.
And you're being faced with all of these different, you know, choices that you have to make too these surgeries that you have to choose from these very extreme decisions. And you have no clue what any of that really means or what you would feel like with that. And then all you see is people that just are, are standing there and not looking very comfortable because it's this stiff standing against a wall for your doctor's office.
So it was just really difficult for me to be going through that emotionally. On top of everything else too, right? As if we don't have enough things that we're dealing with to then have that on top of it. So after all of that, I am going through treatment and I start to realize that all of these things that I'm afraid of, all of these things that I thought were going to change the way that I felt about myself, about my body--I was still okay. And in fact, I was able to, you know, look at myself fighting through all of this and, and really see that my body was strong and it was, it was helping, you know, fight to fight this disease, right. And. I guess I, I was able to recognize that all of these things that I was afraid of did not need to scare me the way that they did.
So I wanted to share that story with the world. Really, I just wanted to be able to show other women that they don't have to have that fear. And I felt like I had a really unique. opportunity in a way with the, just the way that my surgeries fell. It started off with, you know, planning to have to choose just one surgery timing wise, I had to go through a lumpectomy and then I had to go through all of my chemotherapy. And then I had to have my double mastectomy. I had delayed reconstruction. So I went through. pretty much all of these different phases that you could possibly fathom and to be able to show to somebody else who might be faced with similar dramatic decisions like that. That, at baseline, really was what I think I needed to give me that kickstart in my confidence to feel okay. And then to be going through treatment, like I said, I just see myself in this different way after rebuilding that confidence a little bit right before my first surgery was when we did my first photo shoot.
K:
So whose idea was it to sit down and take a photo at that early stage? Like, was it jolana's idea or was it your idea? Like, what made you think to do that?
M:
So I guess, at the time of my diagnosis, when I was faced with all of these insecurities about my body, I felt like I wanted to memorialize my body as I always had been, as I had always known I wanted to just have something to be able to remember what I looked like before everything changed.
So that was really where it all started--I was just looking to have that first photo shoot and not really have anything beyond that. Again, I was afraid that I was not going to feel comfortable in my body that I was not going to feel confident ever again. So having that first photo shoot was just a way to show who I had been and then as I went through treatment.
Everything just seemed to be not as terrifying as I thought it would be at first. Losing my hair wasn't this big deal. I was able to find ways to find silver linings through all of that. And I think that's really what also helped me to build up my confidence and feel comfortable. As I'm going through treatment, to want to go through more boudoir shoots, to then be able to capture what it looked like in every single stage of what I went through.
K:
At what point did you feel ready to share those with the world? Did it take you a while?
M:
It did take me quite a while, actually. After I think my It was after my mastectomy. To be honest with you, I think I was still under the influence of anesthesia when I really just decided I had the guts to just go ahead and put it all out there.
So I think that gave me the little boost that I needed to really be able to put this out there. And. I'm, I'm glad that, that I did because it's been really, it's been really rewarding to see all of these different women like yourself who have really been impacted by this work and who have felt inspired and have felt empowered to, to love their bodies even through all of this.
K:
Yeah. What struck me was that I still have never seen anyone share. the expanders, like you shared the stage of your story where you still had expanders in, and I've heard them described and I've heard people talk about what they feel like, but I've never seen a body with expanders in and you know, breasts with expanders in that are uncovered.
And. I think just the power and the connection probably between you and Jolana, it was so powerful because you have zero shame. You have zero self consciousness in those photos. You are truly self loving in your spirit. And that was powerful. Like just the combination of having that kind of raw representation of what was going on, but also the countenance that you had.
And wow, it was, it was amazing. I'm sorry that this is an audio program because I'd love to be able to share. At the end of the YouTube version of this this podcast episode, we will definitely share these photos so that people can see them, but talk a little bit about how this morphed from just you sharing your body with the world into a project where you're inviting other women in to this invitation to share their bodies with the world.
Well, I mean, really it, It was rewarding to be able to share my own experience and my own story, but I, that's not relatable to every woman that is out there either. My, my experience and my body is not every body that has been through this.
Even beyond that inspiration part, I really wanted to be able to give those women that same experience that I did of having that opportunity to have a confidence boost for themselves as well, and to really learn to fall in love with their bodies again. Jolana is just fantastic. I can't imagine a better person to be working on this project and this organization with, she's just so encouraging and she really knows how to just cheer you on every step of the way and coaches you through it and makes you feel so comfortable. And I think that just the way that she approaches giving women this empowering experience is just a whole other part of what we've been able to offer by sharing this work with the rest of the world and traveling and visiting other survivors like yourself.
K:
So great. Yeah. And so rare. I think I personally was inspired by you and a couple of others that I discovered on Instagram to go and hire my own Boudoir photographer after my first mastectomy. I asked her to do this incredibly personal thing and do this project with me when she had never done anything like it before. She'd only photographed breasted, you know, whole women that had not been scarred in this area. And I was asking her a lot, I realize now! And I've been back to her because we did build a rapport in that.
But that is a huge piece of it--just Jolana's comfort and her confidence in your beauty. So that's such a gift. And I know you guys share these photos both on Instagram and Facebook, right?
M:
Right. Yes.
K:
So, and you've come to a place where you've started--a couple of years ago--started asking women to share their stories along with photos in a kind of short, brief, short form way.
Can you talk a little bit about your latest project you're working on an actual book like a physical publication now for the first time. And what is that going to look like? How are you going to marry it, it sounds like it's going to be photographs taken by Jolana only where the ones on Facebook and Instagram are like mine was taken by my own local boudoir photographer, but the book is going to be just Jolana's photography of women post mastectomy or post Lumpectomy also?
M:
also?
Post lumpectomy... post mastectomy... post reconstruction... flat, without choosing reconstruction.... we're really looking to be able to show all of those different options that can be chosen. Because again, there's really, there's not a lot of information that is out there that is really encouraging or really shows you that you're going to. love your body after all of this, when you first get this diagnosis.
So we just find it really empowering to be able to share all of these different stories from different women to remind survivors that you are whole after all of this, no matter what you choose. You are still beautiful. You're still yourself. You're still whole, and you can still feel comfortable regardless of which of these options that you choose.
K:
And that's the name of the book, right? You are whole? Is that the planned title?
M:
Yes. You are Whole is the name of the book.
K:
So how will you ask the women in the book to share their stories. Is it going to be a longer form, a page and a half or two page story, or is it still going to be kind of a brief short-form one, like it is in your Facebook posts and your Instagram posts?
M:
So we're asking for kind of free form, for women to share their stories about their confidence journeys and how they've learned to accept these changes that they've been through, what they've experienced along the way, what challenges they've run into and really how they've grown from all of this.
Then we're using those words to help other women learn to, to recognize that this is not the terrifying thing that you think it's going to be when you first hear that diagnosis.
K:
So your intended audience is for women that are kind of just getting a diagnosis and, and facing this.
M:
That again was, was my experience. It's something I felt from the beginning, but also we want to help women who are in any stage of their journey. So if they're also still. Struggling with with their own confidence after what they've been through you know, there's, there's not a lot of representation out there in the media or things that, we see that really reinforces that there are women that look like us and they can still feel this way about their bodies. They can still want to love their bodies in this way. They can still look awesome like this. I think that's really the whole goal, is to be able to help anybody. Whether they're still going through it and when they have those decisions to make, or whether those decisions have already been made, and maybe we're just trying to make peace with, you know.
K:
I want to end with just a really personal question that I'm asking all of my guests and hopefully you have an answer for it. Hopefully it's not too personal and that is do you have any regrets? Or do you have anything that you really wish you would have known going into this experience that you didn't know, but you know now and you'd like to share with other women.
M:
The main thing that I wish I would have known early on is that all of, all of these insecurities that I faced at the beginning, these, these fears that were piled on top of the fears that we talked about in the beginning, you know, the, how am I going to feel about my body on top of "is this body going to live?" period. You know, there was no need to be adding that onto what's already a very scary situation. So I think, I wish I would have learned, you know, sooner that maybe that wasn't something that I needed to be afraid of, you know. In hindsight, there's probably a lot of different reasons why I had that experience, but at the end of the day it was pain that didn't really need to be had. It was mostly a, a fear that I had being 28, having my diagnosis and not knowing what my life is going to look like. Right. So it's not only a fear of, of how am I going to feel about my body? It's, it's a fear of: how are potential partners going to feel about my body too.
Seeing the pictures that you would see at the doctor's office, it's just not people feeling that comfortable. So it's just this stiff torso is all you see, and then I feel like that also makes it really hard to choose anything but the thing that looks what we are most accustomed to which is some form of reconstruction... and I feel like that's a disservice as well. Because. there are so many complications that can be had with reconstruction as well.
I think that there needs to be more out there that shows women that all of this can still look beautiful and natural and still, still feel comfortable and still feel like yourself.
I was offered flat as an option. I feel like for me at the stage that I was at in my life, where I was at in my confidence, I didn't feel like, you know, I had any other choice. And I felt like if, I'm going to have to go through all of this, at least get me some boobs out of it. So I mean, it was, I guess, a lame consolation prize.
It felt like, but I mean, no, really in all seriousness it felt like kind of a, a given decision. Like it didn't feel like there was any other decision. You asked what, is something that I wish I knew to begin with. I do wish that, that I had known this because you know, there, there are times that I'm just like, man, these things are so heavy. Like, why did I do this? And then there's you know, different little quirks about having silicone implants that are just, not the most fun thing either.
So, you know, maybe I might've chosen something else. If I had known that I wouldn't necessarily need this to feel comfortable in my skin. Who knows?
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Thanks for checking out my new podcast! This episode is a super short intro to my story just in case you haven't heard it before. Thanks for listening! -Kathleen
Episode One Transcript:
[00:00:00] June 26, 2024. Dear diary, Wait.... Are you my diary? My name is Kathleen Moss. Welcome to my podcast. You may know me from my YouTube channels, "Etrogen Diaries"; and "Seeking Deeper Health"; or maybe you found me through my Instagram account, @a.breast.cancer.diary. However you got here. I'm glad you made it. This podcast called "A Breast Cancer Diary"; is a new project that I'm hoping will last for many years. It's not going to be polished, professional, or even an entertaining podcast. Because to be honest, for me, recovering from breast cancer is mostly about finding ordinary people who can help me feel less crazy as I continue to make sense of what just happened to me and my mom.
That's all I'm here to do, to help you feel less alone--less crazy for all the things that you've been worrying about. So at least for the first season, instead of inviting experts on, I'm inviting my friends and fellow advocates from the breast cancer community, who have unique experiences and can tell personal stories in their own informal language, without shame.
This first season is really about our intuitive moments, moments when we surprise ourselves and do something really strange, but also freeing, like leaving the career that we've been picturing ourselves staying at for 20 or 40 more years, or posting a photo of our newly reconstructed breasts on Instagram just for solidarity sake, or saying no thanks to chemo or implants when we totally had planned to go through with them up until the last moment.
This weekend will be my first anniversary of my second mastectomy on the right side and my final revision on the left. Talk about closure. I got some serious closure that day. That was a day I so looked forward to. I still can't believe how fortunate I was to have so many other breast cancer survivors supporting me that day, and week, and month.
Instead of a funeral procession for my lost breasts, we made it into a celebration of life, recovery, and wellness. and helped me so much being a part of a community that celebrates chests of all shapes and sizes and symmetries.
This last year has probably been one of the most painful and important years of my life. My dad's dementia finally dipped to a point that made it so that we were unable to care for him. Mom's breast cancer came back and then stole her from us, leaving me with little to do with my time and my heart. I started to pour myself into the work of breast cancer advocacy and awareness, and I've met so many amazing women along the way.
I finally had the chance to get a tattoo on my concave side to cover the gnarly scars this spring. It makes me smile more readily when I look in the mirror. I'm still learning to really see myself and love my body more fully, but I already love it more fully than I did before cancer.
This last month, I interviewed two of my favorite women from the group of superstar doulas who midwived me through this last couple of years, and I'll get to share two pieces of their stories soon in the podcast. But first, I want to share a little bit about who I am.
I'm a 51 year old wife, mother, nutritionist, writer, and spiritual director who grew up in Portland, Oregon. I put myself through college, waitressing, and going to school part time for 8 years. My first romantic relationship was with a man who was a sociopath, so I didn't really date at all from age 25 to 37. His addictions weighed on me so much that I spent my first 10 years of work life working as a social worker in the foster care system, which was the place that he and his brother, another abuser of mine, got so messed up.
I was 30 when I decided to adopt an older foster child as a single parent. And I did. My daughter was 9 when I got her and 10 when I adopted her. I had a spiritual community around me that was super solid and helped me take care of her well. When I was 38, I started online dating and I met my husband, who I married a year later, and we moved out to the country, where we still live, with just one of our kids still living with us.
In my early forties, I had two cancer scares. One came through uterine polyps, and the second, a year later, showed up as a shadow on my breast ultrasound, which happened because I found a benign lump in my right breast. For eight years after that, I had ultrasounds on both my uterus and my breasts every six months. I became a nutritionist to try to influence my increased risk of cancer seven years ago, but all the removal of silver fillings, cheap meat, and processed foods from my diet could only go so far. And like so many women I've come to know, the stress of COVID is what I believe put me into the danger zone.
I didn't ever feel a lump in my cancer torn breast, but my sweet body told me that there was something wrong by sending dead cancer cells out through my nipple in bloody discharge three years ago. That's when we started all the MRIs and biopsies, which at first showed nothing, probably because of my dense breasts. But eventually, I was diagnosed with DCIS, or precancer of the duct. After my single mastectomy for DCIS almost two years ago now, I was told that I also had been harboring invasive lobular breast cancer in that breast, but not enough of it that I had to have chemo or radiation.
I only had a couple of millimeters of active cancer. I knew instinctively that implants weren't for me, so I had a plan to get a Goldilocks Mastectomy. But it turned out that my DCIS was in my skin by the time I had surgery, so I got a concave closure with a lump of extra skin that my surgeon wanted to turn into a nipple... even though I had told her that I didn't want a nipple.
At the time of my first mastectomy, I felt really lonely. I started looking for a way to get into deeper community with survivors. I found that in the Flat community here on the West Coast. They not only helped me not to feel so alone in my struggle, but I also saw how much they were celebrating their bodies, which freed me up to let go of insecurity and self consciousness, which I never thought would be possible, especially six months after mastectomy. I found them on Instagram, and that's why I've been telling my own story, or what I've called my diary, on social media. I see it as a quick way to connect with women who desperately need this kind of support in a timely way. I never thought I'd be such a big fan of social media.
Nowadays, I still do work for flat visibility, and for flat to be offered as an option after a mastectomy. But most of my advocacy work is around lobular cancer awareness, supporting a group of 50 advocates who are seeking to do local advocacy in their own communities with the help of the Lobular Breast Cancer Alliance.
I mentioned that my mom also had breast cancer and died of it recently. This happened just four months ago, and I'm still processing the loss. It was just a month between diagnosis of her lung mets and her death. I'd been living with her about half of the time for the year prior to her death, so she left a huge hole that I'm still trying to figure out how to fill.
Hopefully this new project will be a way to memorialize her, and a kind of tribute to her memory. Stay tuned for my first full length episode where I'll be interviewing one of the first women I found online who made me feel less isolated by sharing photos of her cancer torn body. Michaela Raes will be my guest on the next episode.
I'll talk to you then.
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Welcome to my new podcast. The release date for the first episode is June 30th. Subscribe now so that you can listen then! Recognize this voice? Kathleen's youtube page is called "Estrogen Diaries with Kathleen Moss" where you'll find about 75 videos that you can check out while you're waiting to hear the new podcast.
