For women facing mastectomy (the surgical removal of the entire breast), one of the biggest decisions is whether or not to undergo breast reconstruction. Many women choose either to get implants or to have an autologous tissue transfer — a procedure that relocates tissue from another part of the woman’s body to create a replacement breast mound. But other women choose not to undergo these additional surgeries or may not be candidates for reconstruction. There is a growing community of women who are “going flat” after mastectomy. To tell us about her personal journey, and her decision not to undergo reconstruction, please help me welcome Katrin van Dam.
About
Katrin van Dam is an executive at a major children’s media company. At the end of 2018, her debut Young Adult novel, COME NOVEMBER, was published. Four months later, she was diagnosed with bilateral invasive breast cancer, and opted for a double mastectomy without reconstruction. Having gone through this experience, she hopes to advocate for other women who are confronting mastectomy, and to demonstrate that going flat can be not only a healthy choice, but a joyful one.
Follow Katrin on Instagram and Twitter
Transcript
Adam: [00:00] For women facing mastectomy, the surgical removal of the entire breast, one of the biggest decisions is whether or not to undergo breast reconstruction. Many women choose either to get implants or to have autologous tissue transfer. A procedure that relocates tissue from another part of the woman’s body to create a replacement breast mound, but other women choose not to undergo additional surgeries or may not be candidates for reconstruction. There is a growing community of women who are quote ‘going flat’ after a mastectomy. To tell us about her personal journey and her decision not to undergo reconstruction please help me welcome Katrin Van Dam.
[00:35] Katrin is an executive at a major children’s media company. At the end of 2018, her debut young adult novel Come November was published and four months later she was diagnosed with bilateral invasive breast cancer and opted for a double mastectomy without reconstruction. Having gone through this experience she hopes to advocate for other women who are confronting mastectomy and to demonstrate that going flat can not only be a healthy choice but a joyful one. Katrin, welcome to the show.
Katrin: [01:05] Thanks, Adam.
Adam: [01:05] I’m so excited to talk to you. I have no knowledge of this, but I’m very interested in understanding your perspective on it, so just tell us a little bit about your story so we can get to know you.
Katrin: [01:17] Sure, and by the way, thank you so much for letting me come on and talk about this. It’s something I feel very passionately about and so it’s really great to have a place to advocate for this.
Adam: [01:28] I can’t wait to learn.
Katrin: [01:29] So my backstory is I am basically the poster child for early detection. So I had gone in for my annual mammogram, which had come out clean and a few months later I went in for my annual physical and my wonderful primary care doctor found a lump and I didn’t think much of it because I had dense breasts and I had had lumps before, but I did my good followup and I went and had some testing done and this time the tests came back with invasive ductal carcinoma, which was a shock. But I went to the breast surgeon that my doctor recommended and she and I spoke and we thought we were most likely headed for a lumpectomy and radiation, which was sort of the standard treatment.
[02:13] It was a smallish tumor so that seemed like a good option but my very excellent breast surgeon said, you know, just out of an abundance of caution, I want to send you in for an MRI to make sure there isn’t anything else that we’re missing, which turned out to be a really good choice because the MRI showed an area on the opposite breast, the other breast that was also suspicious and then an additional area on the first breast that she didn’t like.
[02:39] So we went in and tested the second breast, came back with the same diagnosis and at that point, I had had thyroid cancer as a young woman and so I was just in no mood to mess around. I literally said, “Okay, let’s do the most aggressive thing that we can,” which was to go for the mastectomy instead of the lumpectomy. But because of early detection, both tumors were small. They hadn’t spread to my lymph nodes. I did not have to have radiation or chemo so I’m actually on hormone therapy, so I take a pill every day and I’m recovering from surgery and that’s kind of the extent of the damage. So I’m really lucky.
Adam: [03:19] Wow. Wow, that’s fascinating. I’m really glad that you are so aggressive about it and then really researching and double-checking all your options there. So let’s just talk for a moment about the options that you had and so I know obviously reconstruction is an option that a lot of women talk to their doctors about. You know did you discuss it with the surgical team? What options were you given? Kind of walk me through that.
Katrin: [03:42] Sure, yeah, I mean the truth is and I have mixed feelings about this. I think it’s actually not even possible to not discuss reconstruction, right? Like any conscientious surgeon is certainly going to say, “Look, I want to make sure that you have all the information you need, so go talk to somebody about reconstruction.” But there’s also surgeons who just kind of assume that women are going to want to reconstruct, like of course, they are and so a lot of times women aren’t even told that not reconstructing is a choice. So I did have the conversation even though I had already started to think pretty seriously that reconstruction was not for me.
[04:17] Here’s what the doctor told me my options were. We talked a little bit about deep flap, which is the one where they slice you across your abdomen where your waistband on your pants falls and they take tissue out of there to make a new breast. I wasn’t really a candidate for that because I was doing both and there just wasn’t enough tissue to make two breasts of any size so that wasn’t worth talking about. So then we talked about implants. We talked about saline, we talked about silicone, and I had really not had much of an understanding of what that surgery entailed and so we got into the details with the surgeon and then I also did some research afterward.
[04:59] And what I learned was that for a lot of women, I’d say most women, it’s not really a one and done kind of procedure. So the way it works is after you’ve had the mastectomy, they go in, they sort of pry up your pectoralis muscles, your pecs, and they insert underneath them a tissue expander and then they sew you back up. They let you heal for a while and then over the course of weeks or months, they inject that tissue expander with fluid to expand it and push your muscles away from your chest wall and stretch your skin out so that they can accommodate the implant or the tissue that’s going to go in there. And so then there’s another surgery sometime later where they swap out the tissue expander for the implants.
[05:48] My doctor did say that the thing with implants is that they have a lifespan and so for a youngish woman, I’m only fifty one the chances that I would have to have additional surgery to get those taken out were pretty high, which he didn’t say with that there’s actually for women who have reconstruction of any kind, there’s a 30% rate of some kind of post-surgical complication. So that was pretty significant to me and look, I want to be really clear, I’m not here to talk women out of reconstruction. It’s a profoundly personal choice.
Adam: [06:20] No of course. Understanding the options is really important.
Katrin: [06:23] Yeah and once I understood more about the fact that it wasn’t ever going to give me my old breasts back, right. They weren’t going to have any sensation because all the nerves had been cut through. I wasn’t going to have nipples. It was not going to be anything other than a form that would make my clothing look, quote-unquote ‘normal,’ that sort of told me what I needed to know.
Adam: [06:44] Right, yeah and you mentioned about having information and doing your research, talking to your doctor and then also doing research. Give me some direction. Where did you go for that information? How did you think through that and what were the biggest factors in kind of your decision-making process? I think you’ve already mentioned some of them.
Katrin: [06:59] Yeah, well it’s shocking how little time you have to make this decision or at least I did. For women who get diagnosed being BRCA positive, they may opt for mastectomy and have a little more time to decide what they’re going to do. In my case, it was kind of like found out about the first breast, found out about the second breast, had surgery already scheduled, needed to make a decision in a day. It was a little alarming so I probably did not do as deep a dive as I wish that I could have done and it’s hard to find resources, which is one of the reasons I’m thinking about writing this book.
Adam: [07:32] And one of the reasons you’re on this show.
Katrin: [07:34] Yeah, absolutely. There are websites out there, which I looked at including breastfree.org, is quite useful. There’s Flat Closure Now, which I did check out and which freaked me out pretty badly. You know when you’re looking for images online and you type in like mastectomy incision, you can go down a pretty scary rabbit hole and Flat Closure Now is dedicated to a phenomenon called flat denial, which is where doctors have conversations with their patients. Their patients say I don’t want to have reconstruction. They go into surgery and when the woman is on the operating table and unconscious, the doctor says to them, him or herself, “I think she’s going to want to reconstruct, so I’m going to leave her with extra skin,” and these women wake up and they’ve got these folds of flesh instead of a nice flat line that they’ve been expecting. So I read that and I kind of freaked out.
Adam: [08:33] Right, yeah.
Katrin: [08:33] I knew after that conversation with the plastic surgeon that I was not going to do reconstruction because I wanted the shorter, easier recovery. I didn’t want to have multiple surgeries and the risk that it was involved there. I didn’t want a foreign object inside my body and I also honestly have never felt particularly defined by having breasts, and a little bit resent the idea that a woman should be expected to go through a whole bunch of additional surgery just to conform to some societal standard of femininity. So for me that was a pretty clear choice. I also knew that if I really hated it I could always reconstruct later, which is a great option as well.
Adam: [09:12] Oh yeah, absolutely.
Katrin: [09:12] And the one other thing that I want to mention is I decided to go flat and to sort of be out in the world flat, but it’s also very possible to be out in the world and not present as flat. There are women who don’t do this by choice. Maybe they’re ineligible for reconstruction for various reasons or there’s a significant population of women who have had reconstruction and it has gone wrong in one way or another and so they’ve had to what’s called X plant, to have their implants removed. So there’s lots of women out there who maybe did not go into this in such a sanguine way as I did, but who can still walk around in the world and nobody ever needs to know because there are breast forms, there are prostheses.
Adam: [09:53] So I’m curious, I mean you talk about going out into the world, has going flat changed the way you live your life or any components to your life?
Katrin: [10:03] It’s really funny I went through a grieving period before surgery because I assumed that I was going to feel bad about them even though I had never been that attached to them other than physically attached, obviously. And obviously, having a mastectomy is going to change your life, whether it’s a single or a double, that’s fairly serious surgery and there’s going to be some follow on effects, at least in the short term. But going flat has been surprisingly easy for me. I have this wonderful team that I work with and on the day before my surgery, they presented me with a list of the fifty things that were going to be better without breasts.
[10:43] That’s amazing.
Katrin: [10:44] And I got to tell you some of them were silly like doing the limbo, clearly better without breasts, but for the most part they were really on target. It was things like I’m not a runner, but for women who are runners like running so much better without breasts, never have to wear a bra again, never have to worry about boob sweat, which is a thing that comes up a lot on them. I’m on a community called Flat and Fabulous on Facebook and you’d be surprised in the summer how many women are like, no boob sweat woohoo.
Adam: [11:11] I love that.
Katrin: [11:11] I never have to have a mammogram again because there’s nothing to squeeze and there’s also styles of clothing that I can wear now that I never used to be able to wear the shirt that I am wearing today. Never could have worn this if I had breasts because I would have been like, “Oh, bra straps and blah big mess.” So it’s been sort of surprisingly fun, I kind of feel like a badass.
Adam: [11:32] Right. Well and just going back just for a quick moment to the information you said you had to make the decision very quickly. What were some specific resources you look to? Did you look to the Susan G Komen resources and how did that help you through your journey?
Katrin: [11:46] Yeah, well, so I mentioned Flat and Fabulous that community is really incredibly helpful.
Adam: [11:53] Really aptly named, yes.
Katrin: [11:55] Yeah. I, unfortunately, didn’t have access to them until like a month after surgery and I so still wish that I had, because it’s both a tremendous community of support and also a really good source of information just about the day to day of it. As I said I did read up on Flat and Now. Komen was super important to me in one really specific way so I will say their website has a ton of great information about reconstruction. I’d love to see them build in a little bit more information about the other alternative, but what Komen did that changed my life was they sponsored a study called TAILORx a few years ago. The results of that study where they learned that women who have a low aggressiveness score for their tumors, it’s called Oncotype, do not actually benefit statistically from chemo, and so when my Oncotype came back as a low score and my oncologist was able to say to me, :You don’t have to have chemo,” that’s in large part because of that study.
Adam: [12:52] Wow, man, that’s got to be kind of an amazing feeling I would imagine like, Oh wow.
Katrin: [12:58] Yeah, seriously.
Adam: [12:59] Yeah, man that’s fantastic. So, last question, if you have one piece of advice for someone that’s facing this decision, what would it be?
Katrin: [13:09] There’s a lot of pressure around this decision for women. Some of it, as I said in the most extreme cases there’s flat denial, but there’s also just that more sort of benign but very pervasive idea that all women are going to want to reconstruct and friends and family can also get on that bandwagon. So my advice if a woman feels like she doesn’t want to reconstruct is if she has to find a way to tune out all of that noise and really listen.to her own heart.
[13:36] The reason I wanted to do this podcast was both because I want women to know that they have an alternative, but I’m also really hoping that doctors will hear that if they’re not providing that option to women they’re kind of doing their patients a disservice. It’s a really vulnerable time for a woman and she’s been listening to her doctor about things that are literally life and death, right? This doctor has been providing guidance and advice that are clearly intended to preserve her life and so when that same care provider says to her, “And of course you’ll have reconstruction,” just not a medical question.
Adam: [14:12] Yeah, you just sort of take it, yeah, but it doesn’t have to be that way.
Katrin: [14:15] Yeah, exactly you’re primed already to listen to them and to take their advice on that so it’s vulnerable and if you are already feeling vulnerable, it takes an amazing amount of strength and courage to push back on what you’re being told, but if you have an instinct that this is not what you want, then my advice is advocate for yourself. Sum up all of the courage you can find to advocate for yourself as passionately and as ferociously as you would advocate for a loved one and go in there fully armed with everything you need. Ask a million questions.
[14:50] If you feel like you’re pressured, maybe that’s not the right doctor, but if you don’t have a choice then you got to go in there with pictures say, “This is what I want. Do you have any moral or other qualms about performing this type of surgery? What kind of incision are you going to do for me? How are we going to avoid dog ears?” which are those extra flaps of skin that you can have. Ask a million questions, ask them to put it in writing for you. I know it’s hard to do, but nobody else is going to advocate for you like this and you sort of owe it to your future self to be strong for them.
Adam: [15:27] That’s right, that’s right. Kat, this was so amazing and I learned so much from you and your perspective, and your attitude is just really genuinely inspiring. I really appreciate what you’re doing for the breast cancer community and I appreciate your voice and thanks so much for being on the show.
Katrin: [15:43] Thank you, Adam. I really, really appreciate the opportunity. It’s been great.
Notes
Intro and outro music is City Sunshine by Kevin MacLeod. The Real Pink podcast is hosted by Adam Walker, produced by Shannon Evanchec at Dragon Army and owned by Susan G. Komen.