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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:

• Website: www.notputtingonashirt.org

• Instagram: www.instagram.com/NotPuttingonaShirt

• Facebook: www.www.facebook.com/NotPuttingonaShirt

• YouTube: www.youtube.com/channel/UC7LS4oToXH_oJMYAKz5JmPA

Contact Information and Social Links:

• Website: www.yourkillerlife.com

• Instagram: www.instagram.com/yourkillerlife

• Facebook: www.facebook.com/yourkillerlife

• YouTube: www.youtube.com/yourkillerlife

• Twitter: www.twitter.com/not_shirt

Resources:

• Be a guest on the Your Killer Life Podcast

• Sponsor the Your Killer Life Podcast

• Book Tammey or Griff as a speaker or podcast guest

• Snag Your Killer Life Swag!

• Check out the Your Killer Life blog posts, or the original blog, Killer Left Boob

• This podcast is professionally edited by Roth Media

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 not had their mastectomies yet, and who are, are weighing, you know, do I want reconstruction or not? What are some of the questions that you would recommend that they ask their general surgeons since that's going to be their entry point? And I always recommend see a plastic beforehand, if you can, so that you, you know, like you just have that information.

And then what are dog ears? And why is that an important thing? And is that addressed as part of the aesthetic flat closure?

Are you wanting breast reconstruction or chest wall reconstruction?

Kim Bowles: Yeah. So your first two questions, your first question was, what should you, what are your considerations when you're considering whether to do breast reconstruction or not? And the second one is, well, let's get to the second one in a minute.

I definitely recommend speaking with a plastic surgeon so that you know all of your options because every woman's medical situation is different.

I'm not a medical professional. So, you know, I can't give medical advice. I can tell you from a patient's perspective, it's the breast reconstruction decision really, beyond the constr... medical constraints or whether you're a candidate for different things or not, or whether you can access a microsurgeon for a flap surgeries, not everyone can access that, you know, especially in rural areas, but beyond the medical constraints, it's a matter of your personal values and priorities.

Is it important to you to maintain what I call, some people call, a breasted appearance? Is it important for you to present an image to the world, and to yourself in the mirror of having breast mounds, is that important to you?

And you'd be surprised like, cause what you've never until you're facing mastectomy, you've never really been confronted with this.

It's never been an option. You've never thought about it. So you need to take the time. As much time as you can. To really think about what's important to you because breast reconstruction is not without risk, and it's not without cost. So you're, you're weighing the risks and costs of pursuing that with the benefit that it might give you.

And I think the most important thing is to seek out women who've been through it. Who've been through the decision-making process and crowdsource. And that's why I think as much as I sort of... facebook is a love it, or hate it kind of a thing, but it's a great place, it's a great platform for finding a group of like-minded women who can sort of tell you how they experienced that process, like how they made the decision, what went into it and what their experience was after the fact.

That's the that's the biggest thing I would recommend. Honestly. Beyond just making sure you see a plastic surgeon who can tell you what your options are medically. Talking to other women talking to other survivors. Um, you can join there's FLAP groups on Facebook. There's a DIEP flap, um, group run by Terri Coutee, which is patient advocate I'm acquaintances with, um, there's, there's a couple of flat groups, um, "Flat and Fabulous," "Fabulously Flat," "Flatties Unite." Uh, there's a whole bunch just search Facebook for flat, and you'll find it. And you'll just get an outpouring of support for that option.

And I've found most women are very supportive of all options. So even if you're in a flat group, you'll, you'll get support as you make your decision.

And the other thing I would say is try to think, you know, think about the future, and you know, what might your regrets be?

I mean, we can't, we can't know the future, and we can't know how we're going to react, but just thinking about what does reconstruction involve and what are the, what's the likely outcome. And after I make that investment, how am I going to feel about it? Years down the line. So it's just different for everyone.

It's, you know, it's so personal, and you're going to get judgment from some people you're going to get some people in your life for who are going to be like...

Tammey Grable-Woodford: Yes.

Always gonna be someone who judges you and your decisions

Kim Bowles: What's wrong with you? Why aren't you getting your boob job? I guarantee you're going to hear this ignorance from some people, or if you decide to get breast reconstruction, why would you put your body through that?

I mean, it doesn't matter what you decide. You're always going to be wrong. Cause you're a woman making decisions about your body.

So, seek out a plastic surgeon. Seek out, other women. Think about the risks and benefits in your specific case. Think about in the future, what are you going to look back and have regrets and screw anybody that doesn't support you?

Tammey Grable-Woodford: I liked that last one a lot. And it's true.

Kim Bowles: People love nothing more than did that pass judgment on a woman's body.

Tammey Grable-Woodford: It's it's absolutely incredible to me. And it really is what's important. And you know, and even when it comes down to two nipple reconstruction, which I battled with, even that like, you know, you're right at no point in your life, are you sitting around thinking, gosh, what is it going to be like if I, you know, until you're faced with it, remove my breasts.

Would I leave them off? Would I...?

You just, no, you don't go through that. And so, with reconstruction and we'll get into that. Cause I'll, I'll share my story in additional episodes. You're right. It is multiple surgeries and other considerations, implants are not forever. They have to be replaced, and there are even oftentimes multiple surgeries to get the result that you want.

Kim Bowles: There are. And I want to say; I want to interject and say, I have a criticism of the way that breast reconstruction is sometimes oftentimes presented by the reconstructive surgeon, the gallery of images that they will show you are not necessarily the average results that you can expect. They're the best possible results.

Tammey Grable-Woodford: Right.

Kim Bowles: That's fine. As long as you understand that, that's what they're showing you. You know, if you're p... if you're expecting a perfect result that you're unlikely to actually achieve, you might be disappointed, you know, and that's not, you don't want that. You want a realistic expectation of what can you expect?

I think most plastic surgeons, you know, will talk about that, but, but they won't show you necessarily pictures of what you can probably expect. So just... keeping in mind a realistic expectation. I mean, we... we all, wouldn't it be great if we had a no-risk surgery that would give us, you know, perfect breast mounds back that didn't have any risks and that's just not the reality.

Restoration, reclamation, reality

Tammey Grable-Woodford: No, if it, you know, you're right. If you, if you could have a reconstruction to restore you to yourself, the way that you beforehand, wow, wouldn't that be something, but that is not the case in, although I'm happy now it has taken me multiple surgeries to get there. And I had a great surgeon who said to me, and I loved how she set the expectation because she said: "our goal is to get you as close to normal or what you would consider your normal with clothes on."

Kim Bowles: Yeah. Yup. Clothes on.

Tammey Grable-Woodford: And that's a really important distinction. And that's when that hit me pretty hard that I was not going to have the boob job boobs at the end of this, and it's quite a process just to get the the results that I have with, you know, and, and I actually think about how lucky I am in a lot of ways because of the surgeons and the team that I had.

And, and not everybody has that same attention to detail or care, I guess, or skill, right? I mean, frankly, it's a skill.

Kim Bowles: Yeah, absolutely. And there's so many factors that go into play, that come into play, excuse me. For.. that determine what your final aesthetic result, some of which you have control over and most of which you have zero control over.

And disparities in quality of care, come into play here also. I mean, women who are in a position of privilege, financial and social privilege, you know, obviously have a much easier time shopping around and going to a specialist.

There is surgery, and then there is aesthetic surgery

That's not the case for most women, most women in this country, who you land on first is who you get and not to disparage surgeons, but aesthetic surgery is not easy. I mean, it's, it's not easy. There's so many things that... so many years of training that go into even just standard plastic surgery training, and then microsurgical training beyond that.

I mean, you're really talking about a sub subspecialty of surgery. So you have to be your own advocate.

Tammey Grable-Woodford: Definitely!

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

Kim Bowles: You know, you have to advocate to the extent that you can, you have to look at what your options are and just not accept no for an answer. And no one's gonna advocate for you except for you. So, you have to take ownership over it, and that can be challenging.

Tammey Grable-Woodford: It can, especially when you're being told that no, that, that looks great. You look good. And you don't agree with that. And, and I think that that creates opportunity for some frustration and possibly second opinions, because if you are not, I guess what I would recommend with women is to really not settle, to not feel like you're forced to settle, if you can, and you have to seek additional, you know, providers and, and opinions then do it.

Kim Bowles: Absolutely. Absolutely, and their, your, your surgeon is not going to set you up for a second opinion. That's you; you do that. And this is another utility of the Facebook support groups. They can recommend surgeons in your area. I have a surgeons directory on my website, but I mean, That's not the only resource you can seek those out from individual women, that, who've had good experiences.

Not the puppy dog kind. . .

Tammey Grable-Woodford: Absolutely. So let's talk about dog ears, because a lot of people, people who are listening, who are caregivers, people who are just starting their journey with breast cancer. I really need a better word than journey... starting their hike.

Kim Bowles: Yeah, hike up the mountain with the mountain lion chasing you.

Tammey Grable-Woodford: Right. That one, I really trying to do better with my language around this. Right?

Kim Bowles: It's a struggle.

Tammey Grable-Woodford: It is, I mean, let's stop, let's stop putting a bow on it. So as we start that process, what is a dog ear? And is that something that is addressed as part of the aesthetic flat closure?

Kim Bowles: Ok, great questions. So if you picture yourself naked with your boobs out, the breast tissue is like around... this is a major oversimplification, but just for visualization purposes, the breast tissue is like, picture it as like a tennis ball, like in the middle of the breast. You don't, what's coming off of your... what's protruding off of your chest is not just around tennis ball.

It's surrounded by stuff that fills in the contour, right? That's the fatty tissue and the skin that's sort of ancillary to the breast tissue. If you just remove the breast tissue, which is what a mastectomy technically is. And then you close the wound. What do you have left?

Do you have a smooth contour?

No, you have lumps and bumps and excess fat. That just is still sitting there. That's a dog ear—the fat and extra stuff under the arm. I'm like reaching over here. You came and see I'm off camera under your arm, where the wraparound tissue that goes from the nipple and then the contour curves around under, towards your back, under your arm. That is the area where a dog ear, you know, this technically a dog ear is a, is a different kind of discontinuity, but what people normally talk about as a dog ear, they're talking about excess underarm tissue. So if the mastectomy is done with no additional contouring work, you will get a lump of fat under your arm that's quite uncomfortable.

So that's why an aesthetic flat closure is so important to ask for by name because you don't just want a mastectomy with no reconstruction. What you want is a comfortable result that you can live with. And that involves smoothing out of the extra tissue, um, so that you have a smooth, comfortable contour that you can, you know, But you can, you can move your arm around you don't, you're not rubbing into anything. You don't have folds and lumps. And you know, it's an aesthetic, there's additional work, additional surgical work, you know, after they removed the breast tissue, additional work required most of the time, particularly if you have larger breasts, additional work required to make a smooth contour, that's comfortable for you.

And that's an aesthetic flat closure.

And until early 2020. We did not have a name for that.

So women would tell their doctors, I want to go flat. I want to be flat like a ten-year-old boy. I want, there was no agreed-upon specific definition of what exactly they are... you're talking about when you say you want to go flat, but now the National Cancer Institute has defined the term "aesthetic flat closure" as basically a chest wall reconstruction—so rebuilding a smooth flat chest wall contour after the breasts are removed. And it's important to ask for it by name so that your surgeon knows exactly what you want.

Tammey Grable-Woodford: That is so important because I will tell you I had no idea what... until I was in breast cancer groups, how painful, how uncomfortable that, that was even left there, because it just seems like, I can't imagine. I mean, as it was finding clothes and adjusting to my new normal, I mean, even with reconstruction going through that process, I can't tell you how many tears I cried just trying to find a shirt that looked good and not having that. And I was large breasted, um, prior to cancer and, um, I still had extra tissue. I didn't have a, it wasn't, it was not the dog ear, but what happened was I had extra space, and so I would lay on my back, and my implants would fall under my armpits because I had extra tissue there.

And my surgeon, um, the second time she went in and cleaned that up and had to basically extend my incision line, which I didn't care. I would...

Finding a common language for the clearest communication

Kim Bowles: Well, that's another thing is the incision line. In order to get a good aesthetic flat closure, a lot of times, you do have to extend the incision line. It's just; you can't avoid it sometimes. And I think most patients don't mind the X longer scar in order to get a smooth contour. But I'm telling you in surgical training, particularly plastic surgery training; it is, it is a foundational principle, it's a religious tenant that you, you get the smallest scar possible because what they're trying to do is restore your original appearance and a scar is a defect in their mind. And I mean, it is a defect, but at the cost of producing a comfortable contour, of course, most patients are ok with that. It's a; it's a miscommunication.

You know what I mean? It's a common miscommunication. So you do have to be clear with your surgeon, particularly if you want to go flat. Extend that damn incision however far you need to get it under the arm. I want a smooth, flat contour.

Tammey Grable-Woodford: And I will tell you the extension, especially the incision from my plastic surgeon because she was so careful in her process, and she's a plastic surgeon. That has faded. So the incisions that I had that she extended are almost not even visible at this point. And of course, everybody's skin is different and everybody, right.

Everybody is different. And so my results are no guarantees to what someone else's results are going to be. But I know that I can say without question, I did not mind having a... seriously, I already had probably nine or 10-inch scar on my chest. Another two inches was like,

Kim Bowles: Yeah, I know. And it's, and this is. Why it is so important to have these specific conversations with your surgeon. You don't want things going unsaid that are gonna lead to an outcome that is not optimal for you. And it's tough to know as a patient we're just thrown into this world, and what are we supposed to be experts on fricking surgical technique? It's ridiculous, but that's, that's where we are right now. And it's on us to make sure that we are clear with our surgeons. Most surgeons are good about this too, but it's, I think we're evolving in our language and in, in our, our level of expectation for aesthetic result is going up a little bit over time.

And I think that's a good thing, but it's, it's all about clear communication and and shared expectations because your surgeon cannot perform a miracle. It's never going to be perfect. But we want to get as close as we can, right? As close as we can reasonably given the cost of additional surgery. So this does not, it's a negotiation and it's really important to be clear.

And that's why this new term aesthetic flat closure to my mind is, is a game-changer because without clear language, how can you possibly have a shared understanding of what you want?

Tammey Grable-Woodford: That is so true. And it's amazing the excitement, you know, again, because I chose the path of reconstruction that I chose and I'm saying path of reconstruction that I chose because I want to make it very clear. Aesthetic flat closure is a path to reconstruction. It is your, one of your choices for reconstruction.

We decide how important our breasts are to us.

Kim Bowles: You're reconstructing your chest wall. You're not reconstructing a breast mound. You're reconstructing your chest wall contour. Like a... almost and not, it's not a male chest contour. It's a; it's a chest contour without breasts. So we all remember growing up when we were ten or nine or eight or whatever... some of us were unlucky enough to develop early, right?

Um, we didn't start out with breasts and that's not to say that breasts aren't important, you know? But we, individually we decide how important our breasts are to us and how important it is to maintain that appearance. It's so individual and we all started out with the breastless contour. And if you have to remove your breasts and you don't want breast reconstruction, you should be able to get that breast-less contour back, at least approaching it.

Tammey Grable-Woodford: Absolutely. And I think that with providers, I've always the way I phrased it is because no providers intentionally not wanting to give you the best possible result.

Kim Bowles: Well...

Tammey Grable-Woodford: I think that what happens is the providers...

Kim Bowles: There's a very few surgeons who will intentionally overwrite your wish to go flat. That happened to me, but almost all of them are ethical. Oh...

Tammey Grable-Woodford: Wow. We're going to come back to that. I'm actually making a note, and we're coming back to that because...

Kim Bowles: This is what really started my activism.

Don't accept assumed knowledge

Tammey Grable-Woodford: That. Ok. We're definitely coming back to that. So what I was going to say is that I think there's a lot of assumed knowledge with a provider and what I mean by that and assumed information. And what I mean by that is they're having the conversations multiple times a day.

And for you, it might be the first time you're having this conversation. So they have a bunch of assumed information in their head because it is routine to them. And unless you ask the specific questions or dig a little deeper or ask for clarification, you're, you're likely not going to get it. Right? So just even me thinking back, if I had just asked the question of, "What will I look like postop?" With my general surgeon, I would have been mentally prepared for what looked like construction, staples. I would have been mentally prepared for not having sensation in my chest. I would have been mentally prepared for what the drains looked like. Right? But I didn't ask that question, and I call it the cancer train, which moves so darn fast...

Kim Bowles: It does.

Tammey Grable-Woodford: When you, Oh my gosh.

When you're diagnosed, it is just you are on that thing, and it is moving unless you say I need to breathe, and I need to pause this for a second because I need to ask some questions and get some information.

Let's look back to why you are an advocate and what happened and your story there because I think that that is really important and it's not as uncommon as people might think, because I still see it in groups today where it's an assumption and a surgeon is making a decision that you don't know what you want, and that you are going to want reconstruction later. And they feel like it is best to leave you with the tissue that you may not want so that you have that decision later.

I'm still me, damnit!!

Kim Bowles: Yeah. Um, so this happened to me. So you'll have to excuse if I get upset. Um, it's upsetting when this happens to you, it's a... it's traumatic, and it's not something you'll ever forget or get over. I mean, yeah. So, where do I start? So if you can picture me a 35-year-old mother of two very small children, bald from chemo, like swollen, puffed up from the steroids. I looked terrible. I felt terrible.

My mind was still intact. I was still me. I didn't look like me, but I was still me—competent adult making decisions about my body and my future. I I went to Cleveland Clinic, which is a number two hospital in the nation. Intentionally, because I thought I would get the best care there.

Uh, I'm still happy with my surgical oncologist. She didn't do anything wrong. She did a great job. When I told her I wanted to go flat and I wanted a smooth flat chest. Remember, there was no aesthetic flat closure term at this point, so I didn't have access to clear language, but she was, she was pretty clear about it.

And she immediately said, Oh, let's bring on a plastic surgeon for the closure. To get you a nice result at the first surgery. So we did, and I had two consults with that plastic surgeon, and I was very clear that I wanted to go flat. And the whole reason he was on the team was to do a nice flat closure.

And then, surgery day came, and I was being wheeled, and I was in the OR. I have the IV in my arm and both surgeons, it was a co-surgery, which means they're both there from the beginning, but the plastic surgeon just waits.. waits until the mastectomy's done. Anyway, he was sitting, standing there, and I heard him like musing to himself, and he said, "I'll just leave a little extra in case you change your mind."

Question integrity... always!

Keep in mind. That is not what we discussed. That is not what we agreed. I was on the operating table. And I heard him say that. And I thought to myself, "Oh shit." Because I had seen in the Facebook groups, I had seen this happen to woman, but I'd always assumed, oh, maybe they just weren't clear with their surgeon.

It never occurred to me that it was an intentional... INTENTIONAL overriding of your decision. And I heard him say that, and it was like the worst sinking feeling you've ever felt. I knew I couldn't protect myself. I was like 20 seconds away from going under. And I said, "No, make it flat!" And then I made some stupid joke about don't get cancer guys. It sucks. And then I conked out, and when I woke up, he had left pockets for implants on my chest. His words "in case you change your mind."

And what that meant for me was - I can't be done with surgery. I'm going to have to get this fixed. I was... remember I was still facing radiation. I was young. I had a severe advanced cancer. I had the whole kitchen sink treatment to look forward to. And I had a baby and a toddler at home.

I had made my decision to be done with surgery, and he had just snatched that away from me because he thought he knew better than I did. My own mind.

It sounds like... like a horror show. Like why would any surgeon ever even consider doing that to a patient?

I think, um, I could theorize about it, but the effect on me was I had to have another surgery, and I mean, he did something in my body while I was unconscious that I directly... it was directly against my consent. It wasn't even like I didn't consent. I directly said no. And he still did it while I was anesthetized.

This... it is egregiously unprofessional. And I don't think there's any surgeon or any professional or even any, any person that would argue that that's ok to do. And the only reason that it happened was unclear language means no accountability. If you do an aesthetic flat closure your remove all that ancillary tissue. Yeah. It makes implant reconstruction a little harder. If a patient changes their mind.

Yes, it does. Ok.

But does that justify overriding the patient's consent? Never. Never ever. There is never an excuse to do that. The only time a patient should wake up and have an unexpected result that she didn't consent to is in a medical emergency during the surgery.

Tammey Grable-Woodford: Right.

Kim Bowles: And there's no one on earth that's going to argue otherwise. But individual surgeons, a very few of them that would do this, what I call "intentional flat denial." There is no accountability. And. I mean, it's just a, it's an frankly, an example of sexism and medicine.

Tammey Grable-Woodford: It is.

Sexism in medicine?

Kim Bowles: Sexism in medicine playing out at the expense of the patient.

And again, most surgeons would never do this. Ok. But I was unlucky enough to land on one that did, despite me being very clear, bringing photos of what I wanted to look like, bringing a witness, having smooth, flat result in my medical record, he still felt entitled to intentionally override my consent.

So. That happens too, according to my research that I did and presented at San Antonio, uh, in 2019, it happens to one in 20 women who choose to go flat. And again, this is from a pilot study. This is not like a large longitudinal study. So take it with a grain of salt. One in 20 women that we surveyed were intentionally denied a flat result by a surgeon that thought they would change their mind about implants.

So this in terms of the scope of the problem, it's not just me. And over time, as I tried to seek redress from a hospital, um, I mean, I never hired a lawyer. I never, all I did was ask the hospital, look, acknowledge what happened, hold the surgeon accountable; however, you see fit. I didn't even ask for any specific outcome. And, you know, change your protocols. So this doesn't happen to other patients.

Your Cleveland freaking clinic. You tell me you can't prevent intentional misconduct. I'm sorry. No, I don't accept that.

So spoiler alert, they never addressed it. They strung me along, but I mean, my experience trying to seek redress and talking to other women about how it had happened to them, like, were they clear with their surgeon?

Yeah. Most of them were pretty damn clear, and it's still, it happened to them. So it's a systemic problem. It's a bad apple scenario. That's what you're talking about.

Tammey Grable-Woodford: Well, and it's a, I will use some stronger language and say it's a violation. It is a violation of trust. It is a violation of your wish. It is a violation of your communication and expectation. It is a violation of their position. It's absolutely a violation.

Kim Bowles: Yeah, it is. It's a betrayal trauma. So there's a whole field of study in institutional betrayal, trauma, medical battery. It has a lot of parallels to obstetric violence where, I mean, any of us that have had birthed children of our own, we've experienced this dynamic where we're helpless and our consent, we may or may not be listened to, and we don't really have control over it.

And it's almost; it's similar to that... except you're anesthetized. So you have zero control. ZERO.

I have autonomy over my plan.

Tammey Grable-Woodford: Yeah. And I will tell you; I think that this is one simple policy that, that every hospital can make. Once you put that IV in and you have started to give me the drip line, you don't get to ask me or make like there's no decision making. I'm...

Kim Bowles: No. No changes to the plan. And he, I don't even understand why he said it. Like, if, why are you telling me that you're going to do something that I didn't agree to? Why are you even saying that? I think he thought I was already going under. And he was so used to, so just doing and saying whatever the hell he wants, because he's God in the operating room.

I mean, thank God for surgeons, Ok? Thank God for their ability to distance themselves from our bodies. So they can cut into us, and remove the cancer that is going to otherwise kill us. Like, thank God for these people. I never want to disparage the surgical profession as a whole. I have a lot of respect for those folks, and they've saved so many of us.

Um, but that same mindset that allows them to cut into your body can be taken to an extreme where you cross the line. And I think in the moment those surgeons make that decision. And I think. Even the ones that intentionally denie us, like my surgeon did. I think if you go back and talk to them, I don't think they would be able to justify it if they actually had to go through the process.

Like you can't justify that that is like you said, it's a violation of your bodily autonomy. It's a violation of your Hippocratic oath. And if it's, if it's as bad as one in 20. That's pretty damn bad. That's pretty damn bad. Let's say it's a hundred times less than that. It's one in 2000. That's still too many.

You should never have your, your wishes intentionally overwritten by your surgeon. I mean, that's ridiculous. So, but if there's no mechanism for accountability, you can't have a system set up where there's no mechanism for accountability and expect that there's not going to be problems like that.

So the aesthetic flat closure being defined by the National Cancer Institute. Now, when women ask for that, there is no question what they expect the surgeon to do. There's no; I'm going to leave a little extra. No, because the definition of aesthetic closure precludes that completely. So if you ask for an aesthetic closure and it's in your medical record, I expect this to prevent intentional flat denial altogether.

Because no surgeon is going to risk a malpractice lawsuit for that. It's accountability.

Tammey Grable-Woodford: And I think that is such a huge point because you're right, before, no matter what you did to communicate the, not having the medical terminology and that medical standard is harmful because you're not able to protect you yourself further from having these, um, miscommunications or overrides. And I think that this is also one of those areas that because mental health is disconnected from physical health, at least here in the United States.

I can only speak for our country and obviously not with every medical provider. So it's a dangerous generalization, but in general, mental health being disconnected from physical health, not acknowledging the mental health side of you waking up. Having something other than what you agreed to, which is why I use the word violation and I'm not going to church it up, because that is a huge violation of trust, to do no harm, to it is a huge violation.

What is surgical battery?

Kim Bowles: Yeah, it's terrible. I'm shaking, even thinking about it. Um, it causes PTSD directly. It causes, even if you don't get a diagnosis of PTSD, I mean, it's a battery. It's a, it's an intimate battery, and I don't want to overstate it, but it is, it is trauma that is 100% avoidable. So it's everyone's responsibility, everyone that's involved in patient care.

It's, it's all of our responsibility to stand up and speak out against this type of misconduct because it harms patients. It's... you... can you imagine being... going through breast cancer treatment and facing the amputation of your breasts. You finally, and you know this, you finally made peace with the fact that you were going to lose your breasts, and you finally made peace with your reconstructive choice, after in my case months and months of deliberation. These were the breasts that fed both of my children. I had a one-year-old at home that was still breastfeeding when I was diagnosed. This was. This was a hard process for me. And it is for us all to come to terms with what we're going to lose and how we're going to come out of it. And to wake up and have that just be just stolen from you is beyond... I have no words that can really express how horrifying that was to wake up to.

And I am a young, otherwise healthy privileged person with access to great quality medical care, otherwise mental healthcare, physical healthcare. I have a supportive family.

The harm that it did to me is nothing compared to the harm that it could do to a woman that has no other surgical options. What if she has diabetes, and she's not a candidate for additional surgery? But she has to live with that for her whole, whole life. I knew more than one woman who had metastatic cancer, who was denied a flat result and couldn't get more surgery. And she lived with that result to the day she died.

I'm thinking of one woman, in particular, an older woman. There's no person on earth that can argue that that's acceptable. It's it's, it's tragic. And it's who has the power here until we have the term aesthetic flat closure, those individual surgeons held all the power on this. And that's not ok.

So now patients can advocate for their specific choice to reconstruct their chest wall after the mastectomy, rather than reconstructing a breast. And there's a mechanism for accountability. So it is, it is a huge step forward for patients, and we're not there yet. You know, we're not at the point where ever, you know, what we want, what I want as an advocate is I want plastic surgeons to discuss aesthetic flat closure as a reconstructive option. The same way they re... they discuss implant reconstruction and flap reconstruction. This is an affirmative aesthetic choice that you're making. This is your body. You, this is, this is a body that you're going to live the rest of your life in. And, you know, we deserve, we deserve to have our choice reflected back to us when we look in the mirror to the greatest extent possible.

So what I want is I want parity. I want, I want aesthetic flat closure to be in every professional forum discussed with the same level of respect and consideration that breast mound reconstruction gets.

And I don't think it's asking too much and I don't think it's going to be that difficult to make these changes. Like for example, there's an accreditation body that accre... that gives that certifies breast centers, they have to follow protocols, meet certain standards. One of the protocols was the reconstructive consult, and it lists one, two, three, what the reconstructive options are that the surgeon plastic surgeon needs to cover.

You can just add flat closure... aesthetic flat closure, right there at the bottom. Very easy. Simple amendment. Same thing with the legislative aspect of this. So to make sure that insurance covers these services. Need to bring on a plastic surgeon? There shouldn't be any question about whether that should be covered by insurance. Just like there's never a question about breast reconstruction being covered by insurance. You don't get those, those reimbursement requests denied.

That should be that same thing for aesthetic flat closure. And to get the legislation amended. All we have to do is change the term "breast reconstruction" to "breast and chest wall reconstruction" - done. It's like eight words, but eight words that can make a world of difference for patients going flat, which by the way, is the vast majority of patients over the age of 60 go flat, it is four out of five. For younger women, it's less. Ok. But you're still talking about thousands of women every year, going flat.

So as bad as what happened to me is. And I guess I am still suffering from the traumatic effects of it. And I probably will for the rest of my life, just like one in 20 women who go flat is still suffering from that. Um, as bad as that was, at least we have a plan for how to fix this problem, and the plan is moving forward, and it's moving forward because we have a winning argument, but no one can argue against.

Tammey Grable-Woodford: No!

An artifact of medical history.

Kim Bowles: It's an artifact of history. This is not like evil surgeons deciding to leave you with terrible results. I mean, yeah. Ok. My surgeon, yes. Ok. But that's unusual. Most women that get poor results, it's just an artifact of history. You know, we started out with mastectomy surgery. There was no breast reconstruction. Everybody went flat. There is no disparagement of going flat as a, as a second class option. It's just; it's the way we evolved as medical science evolved, and we can just tweak it and fix it.

Tammey Grable-Woodford: I will say that. And I did an episode on, on being a good self-advocate and they're still in your case is perfect... your situation's the perfect example of how you can do everything right in your communications and still have, um, hiccups. And it's interesting to me because the last surgery I had, I always ask for a surgery marker. And I always write on my arm, "no IV, no BP" on the side that I had Sentinel nodes taken out of. And I had someone say to me, when I requested the marker, you don't need to do that. The doctor knows. And so I could have, right? Allowed someone's opinion to dissuade me from my stinkin little surgical marker, but instead said, "she's busy. And if there's an emergency, she'll be busier. I'd like the marker."

And that's just that subtle, super subtle like how your little decisions to advocate for yourself can be overridden throughout the process. And so I recommend excellent note keeping, which you did, communication, which you did. Photos. Use my chart to protect yourself, send photo of what you want with, right?

Like, use the tools that are available because, unfortunately. Once that drip starts, and you are, and trust me, like I have a weird request. Every time I've been under, I always ask my plastic surgeon, please do not strap my arms down until I'm completely out because I don't want to wake up with my last thought being feeling trapped. Right?

Kim Bowles: Yeah

Tammey Grable-Woodford: And silly as that is, but whatever it is that helps you and your mental health through this process helps you advocate for yourself and will help you protect your self should something unexpected or unwanted happen is so critical.

Kim Bowles: Protocol and listen to your intuition. If you're, we have data now. That shows that, um, pushback about your decision to go flat from your, from your provider is associated with a higher prevalence of flat denial. So you're intuition, even, even if we didn't have that data, you always listened to your intuition, right?

Make a big deal over it!!

As women we're taught, don't make a big deal out of it. Or you're just being; you're just being paranoid. No, no. I'm teaching my children to always... always listen to their intuition about their own bodily integrity and their own safety, always. And as mothers, I don't know if you have kids, but no? As a mother, I am not only responsible for my own safety now. I'm responsible for the safety of two other souls. And I take that responsibility very seriously. And one of the best things you can do to protect your children and to protect yourself is to listen to your intuition, honor, your intuition about your own safety.

Who pays the price if you ignore that little voice in your head? You will,

Tammey Grable-Woodford: Yes.

Kim Bowles: And that... it's not worth it. Just do what you have to do to protect yourself. You don't need it doesn't need to be a situation of fear. Just listen to your intuition. I mean, your request to not tie your arms down until after you're out, they can handle that.

Tammey Grable-Woodford: Yes.

Kim Bowles: That's a minor inconvenience versus the cost to you, which is significant. The cost of your mental health in that case,

Tammey Grable-Woodford: Exactly.

Kim Bowles: Significant. And your mental health matters. You matter. Your aesthetic results matter, your mental health matters. You matter, and you matter enough to inconvenience someone in a minor way, even if those people are, you know, surgical professionals that you are worried about offending or inconveniencing, no, you are your own advocate. Good for you for doing that.

Tammey Grable-Woodford: You have the right to ask. And I think that too often as women, we, we, there is a conditioning of society where we give away our agency, and we step back and you have every right, every right to ask... request... advocate... and get the results that you, that you expect, to the degree that they're capable of delivering them.

Kim Bowles: And you might be surprised by your provider's response. Might most likely will be positive. I've heard many, many surgeons say good for you for, you know, asking that for that specific thing, a good, you know, if your provider's response to you, making a minor request is, is one of anger or something that's a big red flag, right?

You might want to reconsider someone that won't accommodate you in a minor way that's important to you. You might want to reconsider using that surgeon because they have total authority over what happens to your body while you're anesthetized. And again, most providers aren't completely ethical. It's just you; you have the control here to decide who you allow to operate on you.

Tammey Grable-Woodford: Exactly and.

Kim Bowles: It's not an emergency situation.

Tammey Grable-Woodford: No. And to your point, it is also just getting over the bias that is there, that if you were to ask that surgeon that did what he did and left you with the closure that he left, he would probably say that we'll know that was the right thing to do. So there is a real disconnect between you having that autonomy and being able to make that decision for yourself and a medical provider saying "well, but my preference is... I see better results when..." and making that decision for you, which is absolutely not ok.

The positive of your story, though, is "Not Putting on a Shirt" and how you have been able to channel this into something that goes beyond making a difference for you and your story but making a difference. I'm getting chills, talking about it, making a difference for so many women.

And you are so busy with the, you've got so much advocacy and legislative work that you do. And tell us about Not Putting on a Shirt as an organization, tell us an probably would take us a full hour to go over everything you've got out here, but tell us about what you're working on and some big wins and truthfully Kim, in an odd way, I would have to say that the universe is thankful that, um, you were able to take this experience and turn it into something so much bigger. A movement.

Kim Bowles: Yeah. You know, I just, before I start talking about the current work, I spent a year at Cleveland Clinic working behind the scenes before I started protesting. I spent a year trying to get them to acknowledge what happened and protect patients. I wasn't asking that much, but during that year, the stonewalling and the gaslighting and the, you know, ultimately, they sent me a short email that said, "We can't meet your expectations at this time."

A systemic problem...

Like this is Cleveland Clinic. If, if Cleveland Clinic can't solve this problem, we have a systemic problem on our hands, that's going to require, and that's, that's how I started. That's how I started the organization was realizing through that process of trying and failing to get redress, realizing that this is a much bigger problem than just me or just one hospital or just one provider.

There's an attitude among many medical professionals that going flat is not; it doesn't deserve any kind of consideration at all. You know, you're going to change your mind. You don't care how you look. There's there's cultural attitudes that come into play. There's the reimbursement piece is a big piece.

It's a systemic problem. That's going to require a systemic solution. And that is why we need. I needed to organize, and I needed to, you know, produce a strategic plan that would address all these barriers. Barriers, things that are contributing to the problem. So anyway, I, I failed to get redress from a hospital.

I tried trust me. I tried for a year, and on my last day there, I finally had had enough, and I couldn't stand walking through those hallways anymore, knowing that I might run into that guy that did that to me. I mean, I was like, worried about what I would do. You know, like I'm a big person. I, anyway, I didn't want to deal with it anymore.

I just had enough. I just want to cut ties with Cleveland Clinic, get the hell out of Dodge. And on my last day there, I was like; I couldn't, it was like my, I was convicted like my conscious wouldn't leave me alone. Because if I just left and just dropped it, it would happen to another woman.

Tammey Grable-Woodford: Right.

Constitutional rights.

Kim Bowles: Nothing's stopping it. And this wasn't just about me. And so I just like decided to just, I just, I was trying to think of what can I do to get the force them to pay attention. So that was when I had my topless sit in. I basically like walk to the CEO's office, turn on Facebook, live whipped off my shirt. Because I'm sorry, but my chest at that point, it's incontrovertible what he did incontrovertible.

You can't look at it and say, "Oh, that's ok." Or, "Oh, that's not extra skin." No, it's like evidence right there in front of your face. So I did a topless sit in, and they called the cops and dragged me out.

Tammey Grable-Woodford: Oh, God.

Kim Bowles: Yep. And then I came back and started protesting on the sidewalk because my first amendment rights protect me. On the sidewalk. Maybe not inside the clinic on private property, but on the sidewalk. I can do what I want.

So that's how it started. You know, I was just mad, and I just was trying to force them to pay attention. And a couple of media outlets picked it up. And then Catherine Guthrie's, um, she's Catherine Guthrie, a women's health journalist wrote an article for Cosmopolitan Magazine about my story and a couple of other women who had had poor aesthetic results. That got published. We went on the Today Show. It was like a media storm, you know, right then. And during that time, I was developing tools and resources for women to try to empower individual patients to protect their choice.

So we had a list of flat, friendly surgeons that I uploaded into an online directory. Um, you know, patient recommended surgeons that are gonna respect your choice, period. Um, and that's everything is on my website right now at nonputtingonashirt.org. We did a couple full of brochures that people can print out that have questions for your surgeon that have pictures of what you want and what you don't want.

Tammey Grable-Woodford: You also have out here, cause I have your website up and we'll link to it in the show notes and at the top of the notes even, you have your strategic plan out here, you have your current projects,

Kim Bowles: Yeah, we have a lot going on now. One way to approach it. The other way to approach it is from the top down. So the legislation and the different institutional protocols that need to be amended and the NCI definition was a really big one. We're going to use that too, you know, take the next step.

Tammey Grable-Woodford: I love it. And you do have out here contact your legislators. And so with the advocacy work, do you then have tools that folks can use to have those conversations with their individual legislators?

Kim Bowles: Yeah, there's a template for, um, there's the whole rationale for amending the WHCRA, which is the federal legislation. There's a template for the, for how to talk to your legislators on that page. There's a tool that you can use to find your legislators. Your state legislators and your federal legislators.

So there's a lot. Yeah, you can do, you can contact your legislators. You can recommend your surgeon if you had a great surgeon, you can share your story because it's so important to tell our stories so providers can see the impact that the quality of your closure has and the respect for your choice has on your life.

Like it's about dignity. It's not about vanity; it's about dignity and seeing your choice reflected back to you in your new body. It's so critically important that you can share your surgeon. You can share your story. You can volunteer. There's a whole bunch of database management and outreach and phone calls, all sorts of stuff that people can do.

Um, we have a volunteer page on the website. You know, you can order brochures. I ship brochures all the time. I have some to mail out right now, sitting on my desk. You can give these brochures flat as beautiful brochures to your providers to help spread the word. Um, I mean, we're in a pandemic right now, so we're a little constrained, but you can contact your legislators.

What else can you do? You can donate. You can always donate. You know, we, um, we were going to go to the American Society of Breast Surgeons' annual meeting to talk to providers directly. We're going to have an exhibitors table, and that meeting got canceled, but we rolled it over to next year. But you know, some of the work that we do, like printing and going to conferences, requires funds.

So if you donate, if you can't volunteer or if you can't think of another way that you would want to do that, donation is, uh, is, is critical. Absolutely critical. Yeah. I'm not used to not used to talking about the the whole like donation and that stuff. I mean, you know, a lot of the work that I was doing, I mean, obviously I'm not getting paid for it. A lot of it's done online, but the stuff that costs money costs a lot of money.

Tammey Grable-Woodford: Right. I was an executive director in nonprofit world for a long time. And that is just something you get used to, right. Is that that asking for funds?

Kim Bowles: You can choose Amazon's smile. You can choose us for Amazon smile. So it'll donate, you know, we're going to do another fundraiser, uh, shortly for the conference in 2021. And you can donate like an item for our raffle. I'm not sure if it's going to exactly be a raffle. It might be a little different format, but you can donate an item for that too.

And just spreading the word, the biggest thing right now, the most important thing is making sure that patients facing mastectomy have this term "aesthetic flat closure" so that if, if they do decide to go flat, they can take ownership, you know, and ensure that their provider understands exactly what they want.

A smooth, flat chest with no extra skin at all. And no dog ears, you know?

How to help yourself and others

Tammey Grable-Woodford: So I would... oh my gosh. I would also say and advocate for yourself. Make sure that if you had a, um, a result that is not the result that you feel that was agreed to with your flat closure, to have that conversation and advocate and share the podcast, share the, Not Putting on a Shirt website. We'll have a link to that.

Share your story. Because I know breast cancer, clearly since I'm a thriver is not always the easiest topic and you... Kim had me in... in tears. My eyes were getting a little leaky as you shared your story, but there's so much power in sharing that story because that is how we help lift each other and advocate together to get the treatments and the treatment options and the results that we deserve as a collective and having, and sharing your voice.

And kudos to you! I'm sorry it took taking your shirt off. Like apparently, most things in America with women does to get the attention that you so deserved. And, but, you know, it is so important that we do continue to do this for ourselves and for each other, for self-advoca... advocacy, for empowerment for ourselves and for others.

Kim Bowles: For others, for others who maybe are not in a position to self-advocate the way that we are, that's the mo… to me, and that's the most critical thing. I am a young, otherwise healthy person. I can; I have family support. I can do this work. And I can do it on behalf of those who can't stand out on the street with me because they're too sick or they can't make the trip.

Do you know?

Tammey Grable-Woodford: Or they're just...

Kim Bowles: There are so many women who can't do the advocacy that you and I can do by virtue of our position. We we have a moral imperative. At least that's how I see it for myself. To advocate. To be the voice for others who don't have a voice.

Tammey Grable-Woodford: I absolutely absolutely agree with that. So as we wrap up the hard question I always leave everyone with is really just, in closing, what message, what do you want to share with women who are listening women and men who are listening quite honestly, because we do have male breast cancer Thrivers who also are listening.

What would you want to leave with them?

Kim Bowles: Just generally, if you've just been diagnosed, be your own advocate. Period. You have, you have the power to make your voice heard; however, you need to, for me, it took, taking my shirt off in Cleveland Clinic and getting dragged out by the cops. That's pretty extreme, you know, speak up, speak up about what matters to you and make sure that you demand the treatment that you deserve.

Tammey Grable-Woodford: That decision you made is an absolute PR nightmare for that clinic.

Kim Bowles: And I gave them every opportunity. I gave them every opportunity to be on the right side of history for an entire year. You know, they try to paint me as whatever they don't talk about, I'm not that important on their radar, but at the time it was, I was.

Tammey Grable-Woodford: Yeah, oh yeah!

Kim Bowles: They try to say, Kim is spreading misinformation, blah, blah, blah.

You know, what do the right thing? Do the right thing, even when it's not easy, that's what I'm doing. That's what we should teach our kids to be doing. And that's what we expect from our providers.

Tammey Grable-Woodford: I look forward to the ongoing change and changes that you bring to this area of care for all women who are going through breast cancer and making these decisions. And frankly, the tools and information that you have available are not only just absolutely critical and paramount for anyone who's considering their reconstructive options, because this is, it... this is not one that is routinely discussed in detail for anybody who's going through this and advocate hitting for themselves. It's amazing the information you have. And so I highly recommend everyone head out to notputtingonashirt.org, check out the rest resources and the information. Where else can everybody find you, Kim?

Kim Bowles: Well, Not Putting on a Shirt has an Instagram and a Twitter account that I've outsourced because I hate social media. Well, just be brutally honest.

Tammey Grable-Woodford: Right?

Kim Bowles: We are on Facebook, that's about it right now. I mean, we're going to be, you know, attending professional conferences and stuff, moving forward. The pandemic sort of put a little kibosh on some of that, but you can look, um, yeah, and hopefully this October, we'll be talking to some media outlets about aesthetic flat closure.

That's on the that's on the roster.

Tammey Grable-Woodford: That's awesome. You know what I'm, I'm hoping oddly is that with the pandemic and more people being home in some ways, more information is going to be consumed in this way because we are not as distracted with, um, work commuting, right? I'm in the Seattle area. So commuting around here is

Kim Bowles: Oh, it's terrible. I remember I5 corridor bottleneck.

Tammey Grable-Woodford: I call 405 the world's most expensive parking lot.

Kim Bowles: Oh, that's terrible.

Tammey Grable-Woodford: It's just terrible.

Kim Bowles: We call the freeways here in Pittsburgh. We call them parkways

Parkways. It's highly accurate when you think about it.

Tammey Grable-Woodford: Yeah. Anybody who's been through it. Oh my gosh. All right. So you're out on Instagram. We've got the website. You guys be sure to check it out. She has so much great information out here. Her strategic plan is out here. Um, she's got current projects that they're working on. And of course, you've got the ability to donate and participate and which is critically important and share your story, which is so powerful.

So Instagram, Facebook, Twitter website. Am I forgetting anything?

Kim Bowles: Well, we have a couple of videos on YouTube, but it's pretty small.

Tammey Grable-Woodford: Well, you're about to have another, so for, for the listeners today, I want to say, um, be sure and check us out on YouTube. This will be the first video. I think that we go live and you can actually see Kim this time because we've been getting, I am a newbie at this and getting stuff figured out. And so we've got a video, and I think it's just so important to be able to put eyes to people and especially with a topic like this, which is so personal. And so deep.

So I want to thank you all for listening to another episode of Your Killer Life and looking forward to talking with you again next week.

Kim, thank you so much for being on the show, so much for all the work that you do, so much for just being you and, and just really rising, like a Phoenix through all of this and lifting everyone with you as you go.

Kim Bowles: Thanks, Tammey. I appreciate it.

Tammey Grable-Woodford: You bet. All right, everybody, until next week and be sure to click like and subscribe and all of that good stuff. I'm also clumsy with the social media, Kim, be sure and do that. So you don't miss an episode. You don't miss a podcast, and until next time, keep building Your Killer Life.

Remember the conversations you hear on the show are based on unique experiences and varying diagnosis. And we all had our own medical teams. We are not giving medical advice. So if you hear something inspiring, please talk with your providers.  

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