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Test Those Breasts ™️
This podcast by Jamie Vaughn is a deep-dive discussion on a myriad of breast cancer topics, such as early detection, the initial shock of diagnosis, testing/scans, treatment, loss of hair, caregiving, surgery, emotional support, and advocacy.
These episodes will include breast cancer survivors, thrivers, caregivers, surgeons, oncologists, therapists, and other specialists who can speak to many different topics.
Disclaimer: I am not a doctor and not all information in this podcast comes from qualified health care providers, therefore does not constitute medical advice. For personalized medical advice, you should reach out to one of the qualified healthcare providers interviewed on this podcast and/or seek medical advice from your own providers.
Test Those Breasts ™️
Episode 26: Breast Cancer Survivor and "Previvor" 101 with Kim Robinson & Vanessa Vance
Have you ever thought about the power of intuition? Kim Robinson, a breast cancer survivor, did. Kim's lemon-sized tumor could be FELT but NOT SEEN on imaging-3D mammography or Breast MRI. Not only did she feel something was off before her diagnosis, but she also found her voice to advocate for herself w/ her insurance company, leading to her early detection of cancer. Kim shared her journey from being diagnosed w/ stage 1A breast cancer in 2016 to undergoing double mastectomy w/ expanders in 2018 and implants in 2019. She ultimately had them explanted and opted for the DIEP Flap surgery at Center For Restorative Breast Surgery Vanessa Vance, a "Previvor", and now an advocate for Previvors, joins us to share her proactive steps to reduce her own risk of cancer through a preventative mastectomy and breast reconstruction. She was better able to make those decisions through her serendipitous friendship with Kim. Throughout the episode, we delve into the importance of self-advocacy and patient rights. We discussed the role of social media in rallying patient advocates and the medical community to keep the S codes in place after the 2019 changes that would make it considerably more difficult for many women to be able to have the DIEP Flap surgery. Kim and Vanessa share their experiences w/ genetic testing and the ways to navigate the healthcare system, as well as their emotional journey in coming to terms w/ their body image post-surgery and the importance of supportive communities in helping them through their journeys. Vanessa recommends following Dr. Elizabeth Potter's IG account and her nonprofit Community Breast Surgery Alliance for more resources on advocacy. Kim suggests joining a local breast cancer group or the ABC program at the YMCA. This episode is a treasure trove of resources, experiences, and advice for those on a breast cancer journey and those who are Previvors wanting to know more about how they can take steps to reduce to risk of breast cancer.
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Center For Restorative Breast Surgery
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I am not a doctor and not all information in this podcast comes from qualified healthcare providers, therefore may not constitute medical advice. For personalized medical advice, you should reach out to one of the qualified healthcare providers interviewed on this podcast and/or seek medical advice from your own providers .
Welcome to Test those Breasts podcast. I'm your host, jamie Vaughan. I'm a retired teacher of 20 years and a recent breast cancer survivor. My life has been pretty nutso for over a year and many of you most likely know just how overwhelming this diagnosis is, and the more I can help empower women, the better. I launched my podcast on June 11, 2023, which was the one year anniversary of my diagnosis. It has a healing mechanism and have made it my mission to help shorten the learning curve for future diagnosed breast cancer patients and their caregivers. I want you to know that you are not alone. I was told from the very beginning that being diagnosed with breast cancer opens us up to the sisterhood of all sisterhoods, but some people need that extra help and encouragement and all of the confusing and many times, downright scary information they are being flooded with. I've been interviewing many survivors, caregivers, oncologists, surgeons, nurses, therapists, advocates and more in order to provide much needed holistic guidance for your journey. Breast cancer is such an epidemic, so the more empowered we are, the better. Now let's listen to this next episode of Test those Breasts. Today, I am honored to have two beautiful women on my show.
Speaker 1:Kim Robinson was diagnosed with early stage 1A breast cancer in 2016. Because she had very dense breast tissue, finding tumors was very difficult. She had a lumpectomy for her breast cancer. Later, kim developed a large tumor that ended up being benign. However, it wasn't found with a 3D mammogram. Rather, it was from a contrast MRI. Ultimately, she decided to get a double mastectomy with expanders in 2018 and implants in 2019. She did this so she didn't have to worry anymore, because she had many issues with implants. She ultimately traveled to New Orleans in June of 2019 to center for restorative breast surgery, where she had her implants x-planted and opted for deep flap surgery.
Speaker 1:My other guest is Vanessa Vance. Vanessa is a 46-year-old pre-viver who is attempting to outrun her breast and ovarian cancer risks to less than 5%. In this episode, she will share her evolution as she discovers her voice through advocacy work. She was able to apply this new voice during her recovery from prophylactic mastectomy and APAC's breast reconstruction that she had on September 20th with Dr Kablink and Dr Wright at Center for Restorative Breast Surgery in New Orleans. She is currently recovering with the loving care of her sister in Austin, texas. Well, welcome, vanessa and Kim. I really appreciate us finally all coming together and doing this podcast interview. We've talked on the phone. We really do have some interesting ways that we know each other. We have some commonalities, we have some differences, but just having you two on the show is just going to be so valuable for my audience, because we've all had surgery at Center for Restorative Breast Surgery. We all had Dr Kablink and Vanessa and I both had Dr Wright as well, and so just welcome to the show. How are you guys doing, good?
Speaker 2:It's a great day here in Austin.
Speaker 1:Good, and Vanessa, you're still recovering, right yeah?
Speaker 2:I'm exactly a month out today Awesome. So I'm having all of the improvements, and some days are higher, some days are lower, but going in the right trajectory.
Speaker 1:Very nice, very nice. I just would like to ask you guys a few questions and sort of we'll get into more of how our surgeries all went and everything. But, kim, I would love to start with you and ask you to share a little bit about your breast cancer journey with my audience.
Speaker 3:Well, I was diagnosed with breast cancer in 2016 and I chose a lumpectomy. At that time Really didn't realize how hard the two-year surveillance would be, because you get every six months of mammogram or a contrast MRI. Mentally that was really difficult. So at the end of that time period I decided to get a preventative double mastectomy. So I consider myself a survivor and a pre-viver because at the time that I chose to do the double, I did not have cancer, but because of all my breast density problems, I couldn't rely on surveillance anymore. So that was a really hard choice for me. So I kind of identify with both groups of people.
Speaker 1:Okay, interesting. Vanessa, you are a pre-viver as well, so can you kind of explain to the audience what a pre-viver is, what does that mean and how did that impact your life?
Speaker 2:Sure, it's definitely a newer word and it was coined by force which is facing our own risk of cancer empowered.
Speaker 2:And so they're a nonprofit that advocates for people who have genetic vulnerabilities or high family history risk for cancers.
Speaker 2:In my own story and family history I always had this, knowing that I would have breast cancer from around age 25, just based on the women above me in the previous generations and by happenstance, I happen to have had a breast change a year after I had my son and found myself with a breast surgeon who did genetic testing and initially it just said diet and exercise.
Speaker 2:But it's really fast what we're doing as far as the research goes, and it turns out that what was just diet and exercise eight years ago now has become a recommendation of preventative mastectomy and breast reconstruction for care, and then also removal of ovaries and fallopian tubes to reduce my personal risk of cancer. And so a pre-viver is somebody who chooses to reduce their risk and you can choose it. An individualized pathway, no way is right, no way is wrong. It's just up to the individual person. So there's always advanced screening if that's right for the person, and I'm somebody who for eight years have done the alternating the mammogram with the breast MRI, and then, after hearing the updated research, I reevaluated my choices and I shifted from screening to the preventative surgeries and by the time everything's all said and done, I should have about five different surgeries to reduce my risk for cancer.
Speaker 1:Okay, All right, kim, you had mentioned something about dense breast tissue. Can you explain how it is that you found out that you have had dense breast tissue I did as well and why that matters?
Speaker 3:I was not getting mammograms as often as I should have. When I was 33, I had like a baseline mammogram and what they said to me was well, you know, let's just do a baseline, because your breasts are I don't think they call them dense, but basically they're lumpy. So I had that and they said, well, everything's good. And then, you know, in my mind I'm not, you know, you're busy. It's kind of like I wasn't thinking about getting a mammogram I was young. So I did have two before my diagnosis, but no one ever said to me your breasts are dense, you know, you should stay on top of this. No one ever said it.
Speaker 3:And the only way that I did find out is I got a mastitis breast infection, which at the time I was 48. So it's like you know why would I have mastitis? But they sent me to a breast specialist because, honestly, it looked a lot like inflammatory breast cancer. I knew just enough about inflammatory breast cancer that when I saw it and felt it I was like, oh my gosh, and they sent me straight away. Had the radiologist said you have mastitis, and I really didn't believe him because I just felt like this why, why would I have that? So I kept my breast appointment two weeks later and when I got there everything looked normal on my breast. So luckily I had a doctor who said well, you know your breasts are dense, so I'm going to see if your insurance company will do a contrast MRI. Had I never had the mastitis, I don't know when I would have got a mammogram. You know, it could have been two or three more years and a lot could happen in that time.
Speaker 1:Absolutely. It's kind of like luck of the draw of what doctor you have sometimes who will tell you certain things like that. I found out that I had dense breast tissue gosh, maybe like 10 years ago, because I ended up having a lumpectomy two lung to lumpectomies that were benign, but nevertheless that is around the time that I was told that I had dense breast tissue. Didn't really understand what that meant at the time, but now I do. So I started this podcast really to try to shorten the learning curve for breast cancer patients, or now we can even shorten the learning curve for pre-vibers, right.
Speaker 1:So hearing this story from you, Vanessa, is so important just because I actually have met quite a few other women who are also pre-vibers and took it upon themselves to get a mastectomy. I actually have. We have a family friend who did it many years ago and I, of course, was too young to really understand what all of that meant. But starting this podcast and naming it Tessos Breast, it was all around the premise of early detection, In your words. Why is it that early detection is so important? Why does it matter?
Speaker 2:So for early detection in my own life experience of being part of a sisterhood and womanhood in my family, I just feel like so many members have been taken from us early and taken from us despite the science and efforts. Early detection means hope for a legacy of a long sisterhood and womanhood in my family.
Speaker 3:Okay, and how about you, kim? Well, I mean early detection, the main thing with cancer. I mean, if you're going to have cancer you want to find it before it's in your lymph nodes. So mine was found at stage 1A, so it had not invaded my lymph nodes. It was very small and had it not been for that mastitis infection, I don't know how long it would have been before we could find it, because even with a 3D mammogram it could not see inside my breast. It was just too dense.
Speaker 3:That's why I ended up getting a preventative mastectomy, because I got a rather a very large, I mean the size of a small lemon lump that could not be seen on a 3D mammogram. So after that happened to me and thank God it was benign, but I had to have a biopsy, had to go through all that but after that happened I was like I can't keep these because I can't trust a 3D mammogram and, as you know, you know sometimes you have to really argue with your insurance to get a contrast MRI. My doctor had to argue to get the one that diagnosed that and I thought I can't just rely on a 3D mammogram. So they have to go.
Speaker 1:It's interesting because I get a mammogram every single year and I remember in June of 2021, I got a mammogram and I always ask to get a diagnostics with an ultrasound because I know the density of my breast tissue. And so I went and nothing was wrong, like they didn't find anything, and literally less than a year later they found a 5 centimeter tumor with groupings of calcification. So to me, in that one year period of time, that tumor whatever I don't know whether it was there the year before or if it had just developed right around that time and then it grew that fast. I do know that it was aggressive, but holy moly, just waiting a year to get your mammogram and going in there and finding out that you have that big of a tumor I mean, that's not a small tumor and it was stage two. I found out in New Orleans last December, when they took the lymph nodes out, that it had not made it to the lymph nodes, and so Early detection to me is my gosh. If I would have waited any longer to get that mammogram, it may have made it to my lymph nodes.
Speaker 1:So I just feel that, even though that the treatment that I went through was Yuck and you know I had to lose my hair and which, in retrospect I guess, looking back, I guess it's not that big of a deal, but it was a big deal to me at the time and Now I'm pretty open about all the good, the bad, the ugly, but I mean how sick it made me feel and Just all the things and all the cascading things that come after that. How much worse it would have been had I waited. And Into stage three, into stage four, and, vanessa, I would like to take this opportunity to tell you how sorry I am that you've lost family members. I just think that your voice in talking about the pre-vibership and the importance of women going and Recognizing if it's in their family and even if it's not in their family, to make sure that they go get those, test those breasts and Make sure that you catch it early. Kim, can you talk about your intuition that you had breast cancer before you were even diagnosed?
Speaker 3:it was odd because I was fine and it was like one night I was leaving work and I put my appointment book like this and I was like ow, it started right that fast. I mean I'd worked all day, I've been fine, nothing going on, and it was like ow. So when I looked, I got home, I looked at my breast and it was red. So that's kind of what got me started thinking oh my gosh. You know, I started researching and I knew just enough to realize those are symptoms of inflammatory breast cancer. So my gynecologist got me in like within I think two days and they took one look at my breast and they were like we're gonna send you next door. So that made me feel like, oh my gosh, they're thinking it too.
Speaker 3:And even the radiologist after he came in you know, I had a diagnostic mammogram Came back, had some more, and he came in and told me I had mastitis. I kind of was arguing with him because I'm like are you sure? And he was like okay, I know what you're thinking, and if I even thought that we wouldn't be having a conversation about antibiotics. So he said you're gonna take these antibiotics, keep your appointment with your breast specialist, and Antibiotics are not gonna clear up cancer, so, sure enough, by the time I got there I mean I was clear, everything looked good. But the odd thing was, is my breast for better lack of it started humming at me and it drove me nuts. It was just like even with the doctor looking at me saying, well, your mammogram looks fine, I'm like, but my breast is humming, and she kind of looked at me like it's white and I'm like it is vibrating, it's humming, it's driving me crazy. And that's when she said, well, you have dense breast and do you know, that thing hummed. My breast hummed until my lumpectomy.
Speaker 3:Wow it just was like my body was doing everything it could to go hey, hey, you got something wrong in here, so I knew so. When I got the call, I really wasn't surprised and I'll never forget. She said to me well, your persistence has paid off. You do have cancer. I just thought I knew I did.
Speaker 1:It's interesting. I have quite an intuition myself. I always have a very deep intuition about a lot of things. It's kind of scary actually to think about some of the things that I have known for so long. And the spring before I had my mammogram it was right before I Retired from the school district I feel like my body was telling me as well that something was going on, because I remember just kind of coming into the finish line of Retirement and I was in the doing my thing every day, just getting through every day just to get to retirement, and I remember every once in a while I would feel a zinger Burning sensation and I'd be like the heck was that. You know, I'd stop for a minute and then it would go away. I'm like okay, everything's okay.
Speaker 1:But it was in my left breast and I I Remember feeling a lump and I always thought to myself gosh, you know I always feel lumps, but this one felt different. And so when I got the ping on my phone right before my retirement party that said, hey, it's time for your mammogram, and I picked up the phone and called and made an appointment To get my mammogram, I couldn't get it for three weeks later because at that point it had not been quite a year yet. And so they made it for the 26th of June and said, hey, have you felt anything? Do you notice anything? I'm like, nah, nah, I'm going in for my mammogram, they'll find out if anything's wrong.
Speaker 1:And so they made it for that date and I hung up the phone and my husband said that's not true. You have felt things in your breast and you do have a lump. And I'm like, oh my gosh, I do, you're right. So I picked up the phone and they moved it up by three weeks, because usually if you tell them, yes, I do feel a lump, I do feel something, they will get you in as soon as possible, before the year is up. So that intuition does play a really big role and I know that a lot of women have that intuition. So, to my audience, if you're listening to this and really, really hearing the part about intuition, you need to listen to your intuition without going into hypochondriac mode, you know, and thinking that everything is wrong.
Speaker 2:But anyway, vanessa something that I noticed about Kim's story is that she had this inner confidence Paired with her intuition that let her speak plainly to her providers, to be heard, to advocate for herself. So she moved the mountain herself by her persistence, by her words, by her approach, by her calm, and I think that some people were for myself. It doesn't necessarily come naturally, but through Going through this as a patient you do develop yourself and you are able to more firmly hold that space of you know. If something, if I have a symptom, I'm gonna report it. If I don't like to providers answer, I will double check that with a second opinion. Until it sits well with me, I will pursue this and consistently just take care of myself by speaking up. So I love that about Kim's story.
Speaker 1:That's a very, very good point. The more I went through my treatment, I got more voice, and I had a voice before. I am pretty outspoken and I will ask for what I need. And Especially the older I get and I know it does not come naturally to some people, but when you go through something like this, it is really important to find your voice and it is important to ask and Let your providers know what you're feeling and what you need. And again to your point, vanessa, if you are hearing something that does not seem right from your provider, you need to definitely learn how to get a second opinion. It's all it's like. Walk out that door, go get a second opinion. So good for you too, kim. Thank you for pointing that out, vanessa. Kim, you ultimately ended up having deep flap surgery, and that is the same surgery that I had. What was your experience at Center for Restorative Breast Surgery?
Speaker 3:Well, I could never say enough good things about my experience there. I just wish everyone could go and get treated that way when they're going through something like we all went through.
Speaker 1:Yeah, one of the biggest reasons I ended up going there is because I know that they are super big into holistic healing and that is exactly the experience that I had. So the nurses there, kim, what are they like? What was their bedside manner like?
Speaker 3:It was just like no other hospital I've ever been to. I mean it's funny to not want to leave a hospital, but honestly, like I could have stayed there, we actually did the first day we melt it. We stayed for dinner. My best friend was my caretaker for my second half and she loved it there. I mean we're just like we can't. We just can't believe it's made of an experience that is not the best, as good as it could be.
Speaker 1:Yeah, they totally understand the stuff that people are going through when they have to go and get these surgeries. And I remember the food was amazing, absolutely amazing, and my husband was really impressed and he calls it a boutique hospital Because they had all the things, all the good snacks, and everyone was super, super nice. And I do remember when I woke up from my breast surgery, there was this one nurse in particular and I don't know whether it's all the nurses or what, but I remember this one in particular, who. They would come in and empty your drains and everything in the middle of the night. They would take your cute little late. They even give you a lace bra. I mean, come on, like this, is it? You know they want to make you feel pretty and everything, but they would they take the bra off and they would go and she'd say, oh my gosh, they look so pretty. And I thought, oh my gosh, that is exactly what I wanted to hear you know. And it was just so soothing and so nice to hear that.
Speaker 1:With your deep flap surgery, kim, how long did it take you to recover? Did you have any complications? How was your surgeon Then? Tell us all the things?
Speaker 3:I did have one small complication, which was a very small saroma, and luckily my local breast surgeon drained it for me. But when you read about deep flap, it'll scare you to death, you know. I mean, honestly, it's just like this is scary. My experience so I kind of was preparing myself well and it wasn't easy. But I can tell you the next day I mean I was up, I was walking, I was able to move about you know the recovery itself by the time you get to phase two you're feeling pretty good and then it's time to do it again. But within a year you feel pretty much back to normal because, it's you know, some people progress faster.
Speaker 3:I was. How old was I? I was 50 when I had mine. So I just thought, you know, I don't want to be doing this when I'm I know these implants are not working for me. I'm gonna do it now, while I'm younger. But the recovery was not easy, but it was not that bad.
Speaker 1:Okay, yeah, that's kind of how I felt. It was no joke. It was definitely a surgery of all surgeries. Being 10 months out now, I'm feeling great. My breasts look good. I told Dr Cabling that if I never was able to get phase two, which is the revision, that I would be okay. I would be okay mentally, I would be okay physically because he did that good of a job with the first phase and so. But I do get to go in in December, which will be the one year anniversary of my first phase, to get the revision, which will be really nice, yeah, yeah.
Speaker 1:So this next question is making decisions for your own body. For me, the D-flap and any kind of autologous surgery was not available in my area and I did ask my surgeon here when I found out I had to have the mastectomy, about it. I wanted to know because I'd heard it from other people, like I didn't hear it from physicians, I didn't hear it from you know people that I would hope to have heard it from. But I found out through three different friends when I asked about it. It was like this she didn't said she didn't really didn't know anything about it and her only concern was is that there was no care when I came back to Reno. No, kim, you just mentioned that your local surgeon did help you with whatever complication you had. So why is it so important for us to make our own decisions for our own body? And again, also, why is it important for our providers to work with us to make these decisions? Vanessa, do you want to answer that?
Speaker 2:I was just gonna tack on at the end about sometimes a provider's inexperience or they don't have an immediate answer and sometimes they give you a vague answer and it seems like it's a no. You know, like, oh well, you won't have local care. So as a patient it could feel or seem like a no, but that's not true. Like right now in my one-month post-op period, I have my primary care. I have my nurse navigator for my primary care. They were able to get me set up with wound care like lickety-split. I have physical therapy, again for my nurse navigator.
Speaker 2:So all of these different little points along the way to enhance my recovery I was able to stitch together with the help of my insurance company, with the help of my primary care and just with just general knowledge of like, oh, do you want a lymphatic massage? That might be extra. Do you want to have a physical therapist who knows about breast surgery recovery? Okay, I just want to make sure that we point out to patients, to listen to our providers and to filter and to just say, hey, does that sit well with me?
Speaker 1:you know okay, yeah, no, that's a really good point because at that time I was so much in the kind of an in just this crazed state like, oh my gosh, you know, I have these decisions to make and I needed that help, I needed to have that kind of shared decision-making, and I guess what I did is I just kind of went off, did my own research, figured out how I could get this kind of surgery over having implants, and and I always tell people I think that anybody should be able to make whatever decision they want to make for their own body, whether it be implants or autologous surgery. So thank you for saying that. I guess we do need to listen and we do need to ask more questions. Maybe if I had had a call the next day and said, hey, can you sit down and talk to me about what you do know or can you direct me? But some people don't even have I mean me, that's being very outspoken other people may not think about calling up and having that kind of conversation with their surgeon. So thank you for bringing that up, vanessa.
Speaker 1:So Kim and I met on a Center for Restarted Breast Surgery support group on Facebook and introduced me to you, and we all ultimately had in common the coding crisis with CMS, and I didn't find out. I'm gonna let you go ahead and share that story. I didn't find out about this coding crisis until after my surgery and when I did find out I'm like what the heck you know? Oh, my god, I got to be involved in this. Can you share with us what the coding crisis was and how we are all involved with that, the advocacy efforts, and why it is important to all breast cancer patients or pre-vibers?
Speaker 2:the take-home message from the story is going to be pay attention to coding and billing, because what we're about to describe can happen again, and so we just need to stay right on the threshold of making sure that women and men have access to breast reconstruction and mastectomy care. So the coding crisis, basically Blue Cross, blue Shield, in the middle of COVID in 2019, they just sent in a little letter to CMS and requested like oh, there's some redundancies in these two codes, the S codes and the 19364. Can we sunset or can we get rid of the S codes? And so, from there, cms said okay, sure, you know, we'll put that on the docket. But they said let's take two years to sunset the codes to allow the providers and the insurance companies and all the other filaments of the healthcare process to make sure that they're ready for that kind of change. And what happened was the individual companies jumped ahead. So CMS had said oh, you know, december 31st of 2024, that's when we're going to sunset these three S codes. And they refer natural tissue transfer, so autologous transfer, either from the abdomen or from the inner thigh or from the upper upper bum area, the low back area. And so Blue Cross, blue Shield of New Jersey, united, and also Cigna, jumped the gun and just stopped cancer. You know, they just canceled that code.
Speaker 2:And so that kind of caught me in in my own net of when I was in the decision making process, because I was a Cigna patient and so, luckily, the surgeon that I was seeing, dr Potter in Austin, texas, elizabeth Potter, she had been vocal on social media and I just happened to catch her social media message and said, okay, you know, hey, if anybody has Cigna and they're planning on getting breast reconstruction, please call my office and then we can discuss. And so they increased my appointment time and, prior to seeing that social media post, I was planning on seeing at least three different providers and trying to make my best decision based on my own personalized care needs, evidence-based practice. And yeah, it was a wallop. I suddenly had no choices. I had no choices with my body. I had a time frame and I also have so many family members diagnosed with breast cancer my aunt was also, but my final surviving maternal aunt was also diagnosed with breast cancer during this waiting period, and so I felt like cancer was chasing me and that my insurance company was stopping my clock right, like what I could do to protect myself and take care of myself.
Speaker 2:Those choices were taken away from me and so luckily, through these different evolutions, lots of patients reached out to Cigna and in about a month's time they rolled back and they started covering it again and united. Also, it was very brief when they weren't covering the S codes and they rolled it back. And I'm not sure about Blue Cross, blue Shield of New Jersey, I think they probably stayed as not covering the S codes and even to this day they don't cover the S codes. They prefer that one, nine, three, six, four code. But the advocates were all kind of drawn in to speak of the patient voice and send that message to CMS through letter writing and through, you know, blog posts and through sharing their stories on social media and then even speaking at the CMS meeting. And so I was fortunate enough to be the only person who was affected by the coding crisis to speak at CMS and say, hey, I'm trying to get this surgery. You know my access and options to care have been taken away from me. I wanted to see three providers to make my best choice. I wanted to have my surgery sooner. It seems like something so simple, this change in the code, but it changed everything for the patient's ability to get care in their community with the providers they wanted to have.
Speaker 2:And so, thankfully, after that June meeting where all the patients and advocacy groups and other physicians, plastic surgeons presented, the American Society of Plastic Surgeons also presented I'm trying to think if there's any other big names in that meeting but they all presented in support of keeping the S codes and there were no dissenters, I guess, to that concept. And we found out in early September that CMS decided to eliminate the whole plan and so they're keeping the S code so that it keeps stability for patients to have access to breast reconstruction that they desire. And so you know whether you want to go flat, have the Goldilocks deep flap, s gap, pat flap. There's all these natural issues and then breast implants like we should be able to choose and have that protected by the Women's Health and Cancer Rights Act of 1998. But there was just this weird gray area where the insurance companies would cover it but they just wouldn't reimburse at a livable rate for the physicians to continue to do it through the insurance system, and so then that was pushing it during the coding crisis. That was pushing providers to then ask people to cash pay much higher than what they were even getting reimbursed for the surgery. In the past they were asking women to pay $50,000 $33,000 for the surgery and you know, I've just recently got my explanation of benefits and that's in the zone of what the providers are charging for the surgery.
Speaker 2:And it's a highly skilled surgery. You need to have two fellowships plastic surgery, microvascular surgery and experience. You have to do it at a high volume to have this short anesthesia time and incredible outcomes. You know, because some of the patients are in surgery for 12 hours and as soon as they come out, oh, there's a hematoma right there. When I came back to Austin, took my son to the orthodontist appointment, I met a woman at the orthodontist appointment who that was her story. She was not even to the post-anesthesia unit and her surgeon's telling her hey, you know how? We know how there's a hematoma, one breast is really large and one is not. We're going back to the OR. So after her very lengthy surgery, she went straight back into the OR.
Speaker 2:So we just need to make sure that the providers are getting the appropriate reimbursement for this highly developed skill and talent and those people who do high volume microvascular surgery are changing women's lives in an extreme way, and so just advocating and protecting these groups that do this labor intensive and I feel like from the plastic surgeons who do this work, it's a lifestyle like they're on call a long time, because sometimes they have to go back 12 hours later and help the patient again, and so they need to be paid in order to have this lifestyle of living close to the hospital so you can get back to the patient fast enough. Yeah, so that's a little bit about the coding crisis and my personal experience of what happened to my body and my choices and my rights, and I just can't imagine. I mean, I guess there's always waiting in everybody's story, and so that waiting was pretty rocky for me because I just felt like I was withheld or denied care right.
Speaker 1:From what I understand too, they were going to keep covering the trans flap I think it was is that the old version of the deep flap, where it compromises the muscle and it's a longer recovery time, whereas the deep flap is much more modern, it does not compromise the muscle and it's a shorter recovery time.
Speaker 1:And so I was just very lucky to be able to do that. But I thought to myself my gosh, if all women are not allowed, not able to have that option unless they paid 50 grand or more, whatever it is, as it was with my Blue Cross Blue Shield, it was out of network. So I did have to fork out 10 grand, which was, you know, not easy for me, but it was worth it to me, but it would have been so much more I probably wouldn't have had it. So thank you for sharing that, and I am so thrilled that I actually started seeing Dr Potter's social media posts as well, because I just became so much more educated and got on to her lives and her Zooms and things like that and was able to send letters to CMS and get my friends and family to send letters, and that is the power of the people. So when people say my thoughts and my vote does not matter. That is just not true, because we made it happen. All of us did so, kim, what is your experience with that?
Speaker 3:Yeah, I just want to say anyone that has not listened to the CMS meeting live, they should go on that link and listen to it, because for me when I watched that, it was like watching the Kentucky Derby, the Super Bowl, the World Series.
Speaker 3:I rolled into one event because so many of us had been following it and working so hard to get the message out and like like when I heard Vanessa speak, it was like, yeah, vanessa and Dr Potter and all the just so many physicians and advocates you know joined on and spoke up. And when you hear that you're like, wow, everybody that spoke was just, it was so good. So if people haven't watched that, listened to it, they really should take a little time and listen to it and they'll understand what that crisis was. And if that had not been reversed so many women coming up in the next year, it would have been so devastating for them. And some people that don't even know they're going to need deep flap surgery or they may have their implants now and it's working for them, but in four or five years they could have trouble and then there's no option if they wanted to reconstruct. So I would just encourage everybody to take another listen to that because it was so good.
Speaker 1:And we can't take it for granted, because even Dr Potter says, look, this isn't over, like this could come back, we may have to fight for it again. And which actually leads me to the next question and we've kind of really already talked about it about what drives people to become more involved in advocating for women when it comes to deep flap surgery. And one of the reasons that, I think, is that when you hear people speak like Vanessa and Dr Potter and all the others and having women out there on social media encouraging people to write to CMS, I feel like that is encouragement enough. When we are bringing awareness to pre-vibers and breast cancer survivors about making sure that they are advocating for themselves and understanding what their insurance companies are telling them or they can't do or whatever.
Speaker 1:I feel like that's what drove me to jump in and advocate for other women, because I'm thinking to myself yeah, I was lucky and I kind of skidded through and got my surgery, but I wouldn't have been able to do that and that just broke my heart for other women and I thought I got to be part of this. So, vanessa, I know that with you, you know, seeing you, knowing Dr Potter and being connected to her that drove you obviously to do that. And Dr Potter seems so passionate about making sure that women get the whatever they need for their own body, what they feel is right for their own body. I think she even did some surgeries for free. I think that she was doing some surgeries for women who couldn't afford it.
Speaker 2:She's a servant leader, basically like she wants to make sure that if there is a woman or a man who needs a mastectomy and who needs breast reconstruction, that they get it. And you can see it in her actions by how many insurances she accepts. She accepts tricare, she accepts Medicaid, she accepts Medicare Probably all the major carriers too. It takes so much work for her and for her office to have that many contracts and relationships and she has all of this passion to speak up for the underserved, and so that comes through loud and clear, and I don't think I've ever been more inspired by one person.
Speaker 1:Me. Neither she has in her voice, in her eyes and in her actions really is what inspired me. So, to my audience, if you're not following Dr Potter, dr Elizabeth Potter, she's on Instagram. I think she's on Facebook as well. I follow her on both and I just absolutely adore her. To the both of you, how is connecting with each other to support each other through our journeys impacted your life?
Speaker 2:It's easy for me to say I don't think I could do without Kim. Kim slid into my DMs in this early advocacy and, yeah, like as a pre-viver. Sometimes you imagine that you'll be judged by a breast cancer survivor or somebody going through breast cancer, but it's the population, the womanhood or the manhood, that really understands what you're actually doing and facing and how difficult these choices are. Except you have a little bit more lead time to make the choices. It doesn't make the choices any more easy. They're difficult choices to make and so, yeah, kim is definitely a fabric of my life. For sure I love that, especially as she's a major quilter. So, like she's part of the fabric of my life, yes, I love it.
Speaker 3:Well, when I saw Vanessa on Instagram, it really brought home. I have signet also insurance and I just couldn't imagine like doing all that research, working yourself up because you have to work yourself up to cut your breast off. I mean, it's an amputation, that's what it is. There's nicer ways to say it but we're cutting our breast off and it's not a light decision you make. And with me having signet insurance, I feel like I need to go back to my recovery, because I did all of those surgeries from December 2018 to the end of 2019. So my recovery time from deep flat may have been a little bit longer than others, because I had the mastectomy with expanders, then I had a removal, then I had deep flat and then I had my face too, like all in that span time. So I think other people might not have had as long as I did recovering. That was a lot of my body.
Speaker 3:But I remember when I started thinking about deep flat and it was like I felt this urgency to do it. I didn't realize in 2020 is when they started talking about these coding changes. So all I knew was I have to do this now and I followed that intuition. I just felt frantic too. I have to get them out now, because people even said to me, well, you can do it any time, it's going to be covered. And I was like, no, but something could change. So I have to go now. But you know when? Vanessa has helped me so much? Because I needed to find my people who were as upset as I was about these coding changes. And when I saw Vanessa I was like, oh my gosh, she gets it. I've got to find my people because I'd already called the signal myself and kind of got not much of an answer. So I was like Vanessa, what are you doing? Who are you talking to? What are they telling you? Because you know that's my insurance that I don't want other women to be denied the same thing I had.
Speaker 1:We just had an earthquake. That's why my face is like what's going on? Yeah, we just had a couple of earthquakes just now. That was really bizarre. I hear the dogs out barking, and that's okay. This can be part of the interview. Yeah, this is like earth shattering you guys. It's interesting because when all this came up the coding crisis it just opened up a whole nother portal of sisterhood that we all get to be involved in. That we never really asked for, and so I am so grateful to both of you. I have learned so much from you, Vanessa, as a pre-viver, and what your experience is, and, Kim, you too. I mean your experience with your D-flap and the surgeries that you've gone through. Vanessa, what is the expected recovery period for you? How many weeks out are you now?
Speaker 2:Some four weeks out, so probably about six weeks until I go back to work. And it is just such a major surgery that there's going to be a new normal for a while, and it looks like maybe February will be my phase two surgery. So as soon as I am back and feeling good, then I'll be recovering again.
Speaker 1:So thank you. Thank you, sister. How are you feeling Good? Thank you, sister. How are you feeling? As far as body image, do you guys have any body image issues? I thought I was going to have more than I did At first. I did Before I had the surgery. I was having dark thoughts, but I'm feeling pretty good. How about you too, vanessa? What are your thoughts on that?
Speaker 2:That's what I shared with Dr Cabling in the appointment was I said I don't have any impact on my body image. I have incisions, but I feel really great the way the nurses also infused that like oh, you're such a good healer and wow, like if I had any kind of negative mindset statement or I would like, oh, it feels firm, and they were like it's not firm for this phase. So the loving care that was provided really made me ready for what was going to happen in my body and in fact I'm improved than where I started.
Speaker 1:Fantastic. How about you, Kim?
Speaker 3:Well, after having implants and knowing what they felt like in my body, I can just tell you there's not a day that I don't wake up and I sleep on my side and I sleep kind of crunched up like that. I couldn't do that with implants. So every day, almost when I wake up and I'm all crunched up, it's like, oh my gosh, they feel so good. So I think I was able to really accept my body just because it's so much better now. And if I had some nipples they would look like you probably couldn't tell something had happened to me. So eventually I may get some tattoos, but I just look at myself and my scars and I just think, wow, look what I did. Or look what Dr Kibling did.
Speaker 1:I didn't do it, but I think Well, dr Kable hit Dr Kable, he did it, but you had to go through all the recovery and that's no joke, and you guys are rock stars in my mind and I feel like same thing. I don't have nipples, and so I might do the 3D. I'm not sure, but I feel like if I never did I'd be OK. I did hear it's a game changer, though. Ok, so maybe. So did you have something else, kim?
Speaker 3:Yeah, this is a little bit funny. Well, I like funny. I got some of those. I think they're a Mona, I don't know if I'm saying it right. You know, you stick them on and they're just like silicone nipples. So I thought, well, but they kind of stay on, so it's kind of like you have a little headlight. And so I had them on for a couple of days and I thought, oh, I don't know, you know, maybe I want to get a tattoo, just trying them out. Well, one morning I woke up and my husband kind of you know, he was kind of rubbing my leg a little bit and he goes what's this bump on your leg? It was the nipple. It didn't migrate it down.
Speaker 1:That's awesome. It's like well, my breasts have just migrated down to my legs. I guess, right.
Speaker 3:Oh my God, that's too much anymore. But they lasted a couple of days where they migrated.
Speaker 1:Very good. Yeah, I might have to get some of those just to see what it looks like. So I want to wrap up before I get to the resources that will be in the show notes. Vanessa, what is one big piece of advice you would offer to any pre-viver out there?
Speaker 2:I firmly believe in personalized care and so, as far as the genetic testing, making sure that you go in and have regular office visits with your genetic counselor because the research updates and changes, and to speak up and ask, they'll have these panel updates on the genetic testing.
Speaker 2:And so you want to be an informed consumer and know if your family history matches these new cancers that they're testing and poke, poke, poke request the panel update because they found a variant of unknown significance for me, so that 90% of the time that doesn't show up as anything important but it might be in the future. And then I also have a good friend who's a geneticist and she had recommended, as we're going through all these different surgeries, better understanding our medication response from a genetic point of view. And so I did cash pay through in VT and maybe it was $350, but it let me know that I had a little trouble tolerating narcotics and so that was helpful going into this surgery. And so just kind of staying state of the art and knowing that it's not a one time appointment with your geneticist and that you still advocate for yourself above and beyond, even when your geneticist says no like, keep asking, get to yes.
Speaker 1:Awesome, I like that. How can you make it happen for me? Tell me how I can have it happen. Yeah, so, vanessa, are you open to anyone? If they have questions, are they able to reach out to you? I have your contact information and I'm assuming that you'll be open to that. That's amazing, kim. What about you? What is one big piece of advice you have for pre-vibers or breast cancer survivors, or like people who have been diagnosed or Well?
Speaker 3:I would say number one do your research. And sometimes I realize when you're diagnosed you're not expecting that. That's how I was the first time around, so it's like you're just pulled up into a whirlwind and you don't know what to do. But after going through all this, like what you're doing with this podcast, you know hopefully that's going to make a shortcut for women to know there is a thing where you can use your own body tissue. And if you are thinking about getting deep flat, you need to make sure you're talking to a micro surgeon when you're asking questions, because sometimes a plastic surgeon is just going to be like well, that's a really hard surgery and that's what you're going to get. Or they'll say well, it could be a 14 to 18 hour surgery, it's very risky. And then they go on to the other options and luckily my surgeon did tell me every single option when he mentioned tram flap. I'll never forget this. He said, well, you could do a tram flap, I can do that, but we kind of take your stomach muscles and flip them up. And I went what. I said don't you need your stomach muscles? He said, yes, you do. And then he said if you want to use your own tissue. I don't do that. You need a micro surgeon, but I can refer you to someone. And well, after hearing all that, like, my mind is like I'll just take the implants because they sound easier. And he even said there's all kinds of things that can go wrong with implants. And when I went back to him because my implants just felt so bad in my body, just I'm talking about my body. I know some people have them and don't have issues, but for my body they felt so bad and heavy and cold. And I asked him can we make these smaller? And he said well, I can make them smaller, but I'm not sure. But I'm not sure that it would feel better for you. So that's when I decided, you know, I'm having a surgery. One way or another, I'm either taking these out. So I'm going to go back and I'm going to look into this deep flap thing, you know, using some of my own tissue.
Speaker 3:And I had never been on Facebook before, any Facebook groups. But I started researching and I came across was just asking questions, like I see people all the time asking questions. What is deep flap? You know I live here. Has anyone around this area ever had it? And someone responded to me in the same town and she had been to New Orleans I had seen, weirdly, I mean before I was even thinking about deep flap I went on vacation in New Orleans and I was riding down St Charles and I saw the banner Center for Restorative Breast Surgery.
Speaker 3:Well then, I'd had my lumpectomy right. So I'd had a lumpectomy. I was in my two year, didn't? I just thought, wonder what that is. But when that lady said to me I went there, like that banner flashed in my mind and I thought I'm going to call them. And when I called them and did that educational call I'll never forget, they said we're going to tell you what questions to ask, whether you come here or not. So that's, I would for sure, if you're considering, know what questions to ask. What's your flat failure rate? Will you convert me to a tram flap? What if my blood vessels aren't right? You need to know all these questions, otherwise you're just going to be led and you're not going to know that what you should be asking. So just if you want a deep lap, make sure you're researching with a micro surgeon. Don't ask too many questions of a plastic surgeon, because they're not going to do a deep lap.
Speaker 1:And I'm assuming you'll be okay if people reach out to you, if they have questions as well, and I mean I have people reaching out to me all the time asking me questions about it. Because I'm just such a loudmouth about it now because I couldn't believe that I'd never even heard of such a thing, you know. So I just happened to be lucky to find out from these three totally separate people and they spent about three hours on the phone with me talking to me about it and showing me before and after pictures. I had one gal who two gals who had implants went and got x-planted, and I know that Center for Restorative Breast Surgery does a lot of those.
Speaker 1:It's really interesting because my husband and I had been trying to get to New Orleans for vacation since March of 2020. And so we kept on having to cancel it because of COVID. I just totally remember we were going, we had the flights and everything, airbnb, all of it had to cancel, tried to rebook the next year, had to cancel again because it was such a hotbed there, and then we were supposed to go to an Army reunion there in the following August. Had to cancel because of COVID. What brings me to New Orleans Breast surgery right. So I went there a few days prior and I was able to have a good time in the Garden District and we did go into the House of Blues and went to the World War II Museum, so we made some fun out of it before I actually had the surgery.
Speaker 1:And I am now in connection with the Scal Cassandra, who has an Airbnb there, who I have referred people to there. She has a beautiful home in the Garden District and we're actually staying there again in March and I have referred people and she's like bring them on, she goes, I will accommodate as much as I can. So if anybody is going there and they need a place to stay, reach out to me. I'll give you her number. Well, ladies, I would love to know what resources you have for our audience. Vanessa, do you want to share what you have there? Sure?
Speaker 2:So we mentioned Dr Elizabeth Potter a lot and following her account on Instagram, and then she also started a nonprofit for advocacy called CbraAllianceorg, and so I would also recommend following them.
Speaker 2:Stay up to date on all the latest and greatest ways that we can support access to care for breast reconstruction.
Speaker 2:And then for the pre-vivors, using force which is facing our own risk of cancer empoweredorg or facing, let's say, facing our own riskorg is the website.
Speaker 2:They offer peer to peer support, and so I was able to make access that resource early on and that helped me not feel so alone and to have somebody else who had been through the journey, and so I was able to make quick decisions after having that human connection of somebody who had that shared experience. And so I would say those are my big resources, and earlier when we were talking, I would always ask every surgeon you're interviewing what's your evidence-based practice, and then to be an informed pre-vivor or a person who has breast cancer, who has genetic mutations, is every six months or so the NCCN updates the recommendations and so you can have the national guidelines. I think it's $15 and just go to the NCCN and, on my case, hereditary breast and ovarian cancer and you download that, pay $15. So then, when you're going to all these appointments, you know the national standards yourself, so you don't have to wonder whether you're being given the best information.
Speaker 1:Fantastic, very valuable information. Thank you, vanessa. How about you, kim?
Speaker 3:Well, I would say, if you can find a good, active local breast cancer group in your area, that is a very good way to learn from other people. I recently just completed a program at the YMCA called the ABC program. After breast cancer, that's been a great resource for me, met a lot of new friends and also like online on your Facebook groups. One that really helped me was Deepsea Journey. I recommend a lot of people to go there because it has very good, solid information. The admin there really communicates with people, is happy to help. There's videos, there's surgeon lists, there's a lot of really good breast groups. But Deepsea, to me, is just a very solid place to go when you need some information and we all need a shortcut, like you said, like when you're diagnosed you don't know what's going on you need to go somewhere where you can get reliable information.
Speaker 1:Yeah, that's really good. I need to get on there because I have not gotten on there before Deepsea.
Speaker 3:Deepsea Journey and Terry spoke at the CMS meeting and just oh my gosh, I was just like whoa that was so. I mean I was just in awe of all the speakers. Vanessa did such a great job and I know how much that took out of her to do it and she just was awesome.
Speaker 1:I just found it Deepsea, and so what I'll do is put the link in the resources as well. That's awesome. I found a lot of really great information on the NOLA site. I think that's where you and I connected.
Speaker 1:Kim is the NOLA Center for Restorative Breast Surgery, and you can go on there, and if you hear of any like Dr Cabling, for example, if you want to see any kind of comment about Dr Cabling, you go into the group and then you go onto the search and just put Cabling on there and everything that's even been talked about about Dr Cabling or Dr Ryder whatever surgeons then and any kind of issue you want to talk about. You just put it in the search and you should be able to find all kinds of things. So wealth of knowledge out there. So, all right, well, ladies, thank you so much. This has been such a wonderful opportunity to get to know both of your journeys how you got to Center for Restorative Breast Surgery Thank you, vanessa, for your expertise in the coding crisis. That is just so important for people to know about and then, kim, your experience with your surgery and all the things. You are both amazing women and I appreciate it. And do you have anything further to say before we wrap up.
Speaker 3:No, it's just so, so nice to see you guys in person and, like you said, we've been communicating so much through texting and talking and just great to see you guys.
Speaker 1:Yeah, it's really great to see you guys do. Hey, you're really pretty, both of you. I love your glasses. We all have glasses on. We are all very, very distinguished. All right, ladies Without them?
Speaker 1:So we have to wear them. I can't see without them either. All right, ladies. Well, thank you very much, and, to my audience, thank you so much for joining us on this episode with Vanessa and Kim, and we will see you next time on the next episode of Test those Breasts. Friends, thank you so much for listening to this episode of Test those Breasts. I hope you got some great much needed information that will help you with your journey. As always, I am open for guests to add value to my show, and I'm also open to being a guest on other podcasts where I can add value, so please reach out if you'd like to collaborate. My contact information is in the show notes. I rely on people like you to listen, rate, review and share this podcast with your loved ones, so please enjoy my trailer and any other episodes. I'd love to hear your thoughts. I'm on Apple, spotify and other platforms. I look forward to sharing my next episode of Test those Breasts.
