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013: Not Putting on a Shirt... Seriously

Updated: Jun 22, 2021


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Episode Summary:

Optimal reconstructive surgical outcomes are for everyone, and we are the ones to decide and define what reconstruction looks like for us. Kim Bowles with Not Putting on a Shirt joins Tammey to share her story as she chronicles her fight against surgical battery, Kim talks to us about how this strengthened her commitment women’s rights and shares how she used the power of the 1st Amendment to plant the seeds of advocacy for aesthetic flat closure. In this episode, we learn more about aesthetic flat closure as a reconstruction option, obtain tools for self-advocacy, and hear about resources for better clearer communications with your provider.


Topics in this Episode:

  • Intro

  • A Historical Review of Reconstruction

  • Are you wanting breast reconstruction or chest wall reconstruction?

  • Always gonna be someone who judges you and your decisions

  • Restoration, reclamation, reality

  • There is surgery and then there is aesthetic surgery

  • Self-advocate! Is there an echo in here??

  • Not the puppy dog kind. . .

  • Finding a common language for the clearest communication

  • We decide how important our breasts are to us.

  • Don’t accept assumed knowledge

  • I’m still me, damnit!!

  • Question integrity... always!

  • Sexism in medicine?

  • I have autonomy over my plan.

  • What is surgical battery?

  • An artifact of medical history.

  • Make a big deal over it!!

  • A systemic problem...

  • Constitutional rights.

  • How to help yourself and others

  • Sign off

Guest Contact Information and Social Links:

Contact Information and Social Links:

Resources:


A special thank you to our sponsor, Riverdance Soapworks. Handcrafted products we personally use. Visit www.riverdancesoapworks.com and let them know you heard about them from Tammey.


Transcript:

Intro

Tammey Grable-Woodford: Hello, and welcome back to Your Killer Life. I am so excited because we have an amazing guest today. So we're going to start talking about reconstruction, and this is one of the reconstruction options... our topic today... is one of the reconstruction options that I don't think it's enough attention. So we are going to be talking with Kim Bowles of Not Putting on a Shirt - NPOAS. I love it.


So welcome, Kim. Thank you so much for joining me on the podcast.


Kim Bowles: Hi, thanks for having me.


Tammey Grable-Woodford: So tell us a little bit about your story. Tell us about your diagnosis and when you were diagnosed and kind of, um, what, what, uh, what, just tell us about you.


Kim Bowles: Yeah, sure. So I was 35 when I had to colicky baby and a three-year-old dynamo toddler son. And when I was diagnosed, I found a very large lump, and it was Stage 3, HER2 positive breast cancer. So for folks that don't know what that means, that means you get an extra year of infusion therapy. At least.


So I, I went through chemo before surgery. Sorry, it's been a little while since I've talked about the cancer thing, I'm about three years out now, and I'm doing ok. I have no evidence of disease, which is great. Purely a matter of luck, by the way. So yeah, I went through, you know, five months with neoadjuvant chemo.


I was bedridden. My mom moved in with us to take care of the kids while I was incapacitated. And. Uh, then, you know, sur... the surgery decision that we all have to face, I decided to go flat. I decided that I had missed enough of my kids' lives, you know, from chemo. And I just wanted to get back to taking care of my kids and living, uh, living a normal life as best I could.


I think we all crave normalcy after we've been diagnosed.


Tammey Grable-Woodford: Oh my gosh. Yeah, so much so trying and trying to find it is not necessarily the easiest path.


Kim Bowles: No, and there's always a new normal, right. And my goal was just to, just to get back there as soon as I could because it's, it felt like so long, and chemo did ultimately kill the cancer because when I had the mastectomy, there was no cancer, no invasive cancer remaining. So that was really lucky.


Tammey Grable-Woodford: That is great news. And so you had neoadjuvant chemo, and for those that are listening, that's just that's before the mastectomies, and then you were HER2 positive what type of cancer did you have?


Kim Bowles: Ah, just invasive ductal, the standard. Yeah, it was in the nodes. So large tumor in the nodes of Stage 3a and that's why I was so thankful when sur... of the pathology came back from surgery, that it was all the invasive cancer was gone because that actually bumps up your survival numbers quite a bit.


So I'm grateful every day for that. For modern medicine saving my bacon.


Tammey Grable-Woodford: And I just want to point out to those that are watching and listening that I'm 3b you, I should say was 3b was my diagnosis. You 3a and I always like to kind of point to the faces and say, you know, there is health, there is life, there is vitality, there is living and being alive in the diagnosis. And goodness, Kim, you are amazing in all that you are doing. So let's talk a little bit about reconstruction, and I'm talking with a surgeon that I am going to have on to kind of go over the different types. And just like with cancer, I had no idea there were so many types of cancer, and I certainly had no idea there were so many different types of reconstruction options after the fact. And I certainly did not understand until I went through it myself, the, um, complexity of reconstruction.

One of those things, you know, speaking of normal, trying to get back to whatever your normal is at the end of this. There's the DIEP, the TRAM, the implant that even with the implants, there's under the muscle... over the muscle. And then one that does not get talked about enough, and is an actual reconstruction option is a flat closure, but you've been working really hard. And we now have this new thing called aesthetic flat closure.


And can you educate us all a little bit about kind of what was, and what is, and the importance of that terminology and where we are headed with that?


A Historical Review of Reconstruction

Kim Bowles: Oh, absolutely. So 40 years ago, we didn't have breast reconstruction. If you had a mastectomy, that was it. I mean, there was no widely available breast reconstruction whatsoever. You were losing your breasts, and that was it. You had to go flat. There was no other option. As science progressed and surgical techniques progressed, we got implant reconstruction was the first type of breast reconstruction to come on the scene, you know, silicone implants under the skin to produce the breast mound. And then we got a microsurgery. So transplanting tissue from another part of your body and connecting the vasculature so that the tissue would survive and create a breast mound that way from your own tissue.


And there's combinations of that. There's a couple of newer techniques. I don't know if you've heard of the Goldilocks mastectomy, but for women with very large breasts, especially large pendulous press, where there's lots of extra skin, you can at the time of the mastectomy. If you take out the breast tissue, so if you imagine like scooping out, like with an ice cream scoop, you just scoop that up. And what do you have leftover? Will, you still have some fat and some skin there that normally would be discarded, but sometimes, and not all patients are candidates for every procedure, but sometimes you can rearrange that tissue with a skilled surgeon to produce like a smaller breast mound.


So that's a newer option that doesn't require like harvesting from another part of your body and doesn't require an implant. And again, you can combine it, like if you want a larger breast one, you could probably combine that with an implant, maybe at a later date. I'm not sure, but, so there are quite a few options for breast mound reconstruction that happened over the last, you know, 30 years, 40 years.


And as those techniques came on the scene going flat started to be relegated to a second class status because initially, it was, you had no choice and to access breast reconstruction; you had to have a bunch of money. Insurance didn't cover it. So going flat was what, what you were forced to accept if you couldn't afford breast reconstruction. And that started to become the narrative.

Then in 1998, we had federal legislation that required insurance to cover breast reconstruction. And that started to change a little bit. So breast reconstruction rates skyrocketed, I don't, I'm trying to remember the numbers. I know there's escaping me right now, but still, the narrative that going flat was something that no woman would choose if she had another option that was still, like that persisted, and I don't want to disparage breast reconstruction. Breast reconstruction is an important part of healing for so many women. It's a very personal decision. There's a lot of factors that go into it.


For me, the risks and the costs of breast reconstruction, particularly in terms of like the healing period. You know multiple surgeries over a period of one to two years in order to get a breast mound.

It just wasn't that important to me to make that worth it. So I decided to go flat. Now I'm starting to lose my train of thought here, chemo brain. I think we're all familiar with chemo brand. If you're unlucky enough to have to go through chemo.


So breast reconstruction, it's a new thing. It's a new thing in human history. It's new thing in medical history. And we don't realize that you know, most of us that are diagnosed today. We don't remember a time when there wasn't breast reconstruction or at least, you know... Yeah. So that's the history.

And I think over time going flat lost; it's sort of, I don't know if surgeons lost their... their... Oh, God. It's so... it's hard to explain. We just don't have a lot of data on it is the problem right now.


So women going flat started to get sort of, uh, not great quality closures. So I think there was a prevailing attitude amongst a smaller subset of surgeons that they don't need to, you know, do additional work, to try to get a nice flat contour. They can just, you know, sort of throw it together, and then the plastic surgeon can deal with it later.


So a lot of women nowadays are not getting great quality closures that they can live with.


Tammey Grable-Woodford: That's interesting because I know I'm in survivor groups now, and I'm sure you are too out on Facebook and hearing from women and, and, you know, sharing... women sharing photos and being left with dog ears. I'll I'll... probably ask you to talk about that, but being left with dog ears or being left with a clump of tissue.


I've posted my photos, and I forget which episode it is... so I'll make sure and put that in the show notes, but... I posted my post-mastectomy, uh, pictures. And there was nothing that really prepared me for what that would look like. And I feel like, and of course you, I mean, you don't know, right? Like my, my general surgeon and I had multiple consults with everything, but that was my surgeon. I only went through once on the mastectomy side, and he did not leave dog ears. I had a clump of wadded up tissue in the concave chest cavities that were left, which I was hon... I didn't expect that. I mean, why would I know that I would have concave divots in my chest afterward, but he also did spare as much skin as possible knowing, because he and I had that conversation up front, that I would be seeking reconstruction.


And so I did have a good experience with my surgeon who asked me, will you be seeking reconstruction? What type of reconstruction? He helped me get a consult with a plastic surgeon prior to my mastectomy, so he could make the best decisions, his incision lines were beautiful, but it still was traumatizing to me to see, you know, what was soft and feminine and a part of my identity, it's not vanity, my identity. To have that taken away. And to see what I was left with.


And even in that, when it came to reconstruction, a lot of folks don't know there's damage that happens. I had the inframammary fold on one side, no idea what that was until I needed to know, was damaged. Um, but anyway, it is a traumatic experience.


And so, talking with, if you have women who have no