The Breast of Everything

SHANA CARTER: Young mom learns she is a high risk for breast cancer … what would you do?

November 16, 2020 Comprehensive Breast Care Season 1 Episode 6
The Breast of Everything
SHANA CARTER: Young mom learns she is a high risk for breast cancer … what would you do?
Show Notes Transcript

Through genetic testing, Shana Carter, a Young Fives teacher with Lake Fenton Community Schools and mother of two, learned she had a mutation in her ATM gene, placing her in the high-risk category for developing breast cancer. In The Breast of Everything podcast, she talks with Comprehensive Breast Care surgeon Ashley Richardson, DO, regarding the decision she made about her cancer risk, and why she feels a prophylactic mastectomy was the best option for her.

Unknown Speaker  0:01  
Welcome to the breast of everything podcast your trusted resource for breast health information support and encouragement. Your host today is Dr. Ashley Richardson of Comprehensive Breast Care. Welcome.

Unknown Speaker  0:13  
Welcome to the breast of everything Podcast. I am Dr. Ashley Richardson of comprehensive breast care. I am pleased to have my close friend join us today Shana Carter. She's here to discuss several topics including genetic testing, close family members diagnosed with breast cancer and her own breast surgery journey. Shana, thank you so much for joining us today. And why don't we start by having good just tell us a little bit about yourself?

Unknown Speaker  0:34  
Yeah, thanks for having me. I currently am a young fives teacher at Lake fen schools. And I have been married for 10 years. And I have two kids. My daughter, Kendall is in second grade. And my son cash is actually in young fives this year with me. So been a little bit busy. But yes, that's me.

Unknown Speaker  0:56  
Thank you so much for taking time out of your busy day to chat with us today, we have a lot of important topics to get to. And I know that a lot of our listeners will be able to kind of relate to some of the trials and tribulations you've had along your breast surgery journey. So why don't we start I know your mom was diagnosed with breast cancer. Can you give us a little background as to your mom's diagnosis?

Unknown Speaker  1:19  
Yeah, for sure. Um, so actually, it was 11 years ago, this month, actually, that my mom, she was at the doctor and she thought she kept telling her doctor like, I think I have fibromyalgia like she was getting like these, you know, weird pains. And so she ended up going to the doctor, after running a bunch of tests found out that she was diagnosed with stage four breast cancer, it had already metastasized to her liver. And so that was definitely the hardest thing that we have ever gone through. Like, my mom is my best friend. So it was like, the worst absolute thing. She, when they were at the doctor, they gave her a year to live like that was her prognosis and, you know, they were like, okay, we can start you, you know, on the chemo drugs, and you know, just see how long you can get with that. And my mom coupled with a lot of she did chemo, she did you know, radiation. She did a lot of clinical trials, you know, she maintained, you know, she was really positive. And you know, we've just tried to uplifting her the whole time and just trying to stay positive and keep, you know, outweighing the eyes. What can we do? And that coupled with, you know, changing her lifestyle a little bit like living healthier. I am very happy to say that my mom 11 years later is still here with us. She has never been cancer free. Which is kind of interesting. A lot of people are like what like your stage four, like it's never left her liver. She did get a breast. They actually didn't think she was a candidate for surgery. But she did get one of her breasts removed because it was kind of on the right side of her body. So her right breast her liver was on the right side. And so over the years, I mean, she had the lymph nodes removed in her arm and things like that. But she she is still here. She's not cancer free. But she is she is still living with it. But she is amazing. She is working full time. She is the best grandma to our my children. She, you know, is everything to us. So yeah, it's pretty amazing.

Unknown Speaker  3:26  
Well, I think her story is so important, because as you mentioned, she was given one year to live. So stage four breast cancer is curable, but not treatable. And so as you mentioned, she's undergone chemotherapy, radiation, probably endocrine therapy. And all of those modalities are used to treat the breast cancer, but unfortunately, it's not curable. So a lot of these ladies maintain on therapy and treatment. And as you mentioned, she's with us 11 years later. That's phenomenal. That's fantastic. And there are so many ladies that get a stage four diagnosis and do see it as a death sets are given only months or a year to live. And although she's had to endure a lot over the last several years, she's still with us. And like you said, maintaining a very full active lifestyle. You also touched on the fact about surgery. So we see a lot of ladies, unfortunately, that do come in stage four breast cancer and oftentimes they are not surgical candidates, we don't offer them surgery for the breast because the cancer has already spread throughout the rest of the body. So the surgery for the breast really doesn't offer any overall survival benefit. In in your mom's case, sometimes we do do it depending on the size of disease and extends but oftentimes, they do not go down to surgery because it decreases their overall quality of life and does not increase their overall survival. So thank you for sharing that. It's just so uplifting and positive to know how well she's been doing. And I know you know how old were you when she was diagnosed? If you don't mind me asking.

Unknown Speaker  4:47  
Yeah, no, that's okay. I was so that was 11 years ago. So I was 23. Yes.

Unknown Speaker  4:54  
So that's a lot to take on for a 23 year old.

Unknown Speaker  4:57  
Yeah, it was. It was really Yeah, it was crazy. I mean, it was that time where, you know, my now my now husband we were we had been together for a while, but it was like, Oh my god, like, I haven't gotten married yet, we haven't had children yet, like all these things that I wanted my mom to be a part of, and it was, honestly, like changed me as a person so much, because it's something that it just when someone's so close to you gets diagnosed with cancer, like it just, like completely changes you as a person I like get teared up just like thinking about it, because it's just it totally does. You just, you're kind of never the same. You know what I mean? Like you're living there, but kind of like, you know, hoping for the best and being positive. But you're like waiting for this other shoe to fall. And it's just, it's kind of a terrifying type of thing. But we try to do the best we can. She has been amazing. So

Unknown Speaker  5:45  
well, I'm sure it definitely made you reprioritize reprioritize, the things that are important and the things that you value. And like you said, having your mom see you get married, having her be able to be a grandmother, all of those things that we always envision, and whenever you hear of a diagnosis, all you can think of is worst case scenario. And so with that being said, I know part of your mom's journey was also undergoing genetic testing. And can you just give us a little insight as to how that how she underwent genetic testing, and then how you ended up getting tested yourself as well?

Unknown Speaker  6:14  
Yeah, absolutely. So basically, what had happened, it was kind of funny, because my mom actually wasn't the first one. So I, my mom had gotten diagnosed. And at that time, we were just like, okay, we thought like she was the only one in the family with cancer, we weren't really thinking much outside the box. And then my cousin who was like in her, you know, like 2021, I believe she had got diagnosed with non Hodgkins lymphoma. And she was undergoing all of that, you know, going through college, trying to be a college student, all of that kind of stuff. Then my uncle got diagnosed with lung cancer. And then we're like, oh, my gosh, what is going on? And then we went back and we're like, oh, yeah, my my mom and her sister. She has three sisters. We're like, well, gosh, our aunt Colleen had breast cancer, like remember, like, you know, cuz she died early. A lot of you know, family members, you know, died early, a long time ago. So they were like, oh, gosh, so that was kind of when I thought, Oh, my gosh, so my mom has breast cancer hurt. my great aunt had it, you know, we have other cancer going on in our family like, this is terrifying. And that was kind of after all the stuff with Angela, Angelina Jolie and all of the, you know, genetic testing and her going over that preventative surgery. So I thought, Gosh, like, what are my chances? Like, I want to I want to know, I need to know for myself if this is what's going on. So I went to my mom's oncologist. You know, I had the blood tests, super simple. I got it back. And he said, yes, you know, you have a genetic mutation. It was not, you know, the braca genetic mutation it was. So there's a lot of genes obviously, that can cause like, make you predisposed to having cancer, which I wasn't aware of at the time. So I have it, I was a positive ATM genetic mutations. So that to me at that time, they told me that you're predisposed to getting more likely to get breast cancer and possibly pancreatic cancer, which, that's what they told me at the time. And I was like, thank God, no one in my family has ever had pancreatic cancer that we know of. So then my mom thought, Well, okay, this is interesting, like you had it. So she just asked her oncologist, I want to know, too, if that's what, like, if that was also, you know, for me, and so she, she also had the ATM mutation. So then we realized, okay, like, this is in our family, like, this is what's happening. And so, it was kind of interesting to me, because, you know, my mom has three sisters, I have a lot of cousins, especially my one that you know, has already had cancer. And, you know, no one else did choose to get tested. Um, I don't, I still don't know why. But I, you know, for me, like it was it was black and white. It was like, I want to know, and I knew that if I was positive, I knew exactly what my steps were going to be, you know, going through what I went through with my mom, I never want to, you know, put my own children through that. Like, it's, it's so hard. Like, I thought I don't want my children to ever go through what what I'm going through and truly, like, I don't want to go through what I've seen, my mom have to go through, it's a lot and you never know how you're going to feel when you get put in that position. So for me, it was very easy. I was like, take my breath. It doesn't like that is the least of my worries, like my family and my kids. Like that's what I'm here for. And I want to live as long as humanly possible for them. So it was a very easy decision. It was really funny to me because a lot of people said, Wow, like you're so brave. I can't believe you're doing that. And I thought really like, like it was it was very easy. The hard part came like later when I was trying to figure out what the best you know, route was for me, but that part was like Yep, that this is easy. Like I don't I knew I needed to get it done and I was okay with that. So,

Unknown Speaker  10:02  
well, I think you bring up so many good points in that is that you mentioned you didn't, lots of people don't know what they would do if they were put in that position. And we hear that all the time in the office, people will always even ask me, Well, what would you do and I always say to them, I'm not the one sitting in that chair right now. And I always say, you know, Jimmy Fallon will pull 10 people and nine out of 10 people, if he was to pull them would say, I would take my breasts off if I had that mutation. But until you're actually sitting there, with a diagnosis, it's really difficult to make that decision. And you had the background from your mom. And that's the other thing that patients always bring to the table is, what's their own personal experience, there are some people that find out they have a mutation, and they have nobody in the family, and they don't have any personal experiences to really relate to or help guide their decision. But your mom's journey and what she went through and what you went through dealing with her cancer diagnosis really impacted your decision making. I find it incredibly fascinating that you were able to get the genetic testing before she even did. You know, 11 years ago, we were really restricted on offering genetic testing. And as you mentioned, we really only tested for abraca the BRCA one and two mutation back then mostly from financial restrictions, because insurance companies would not cover it. And nowadays, as you also mentioned, we now test for over 50 different genes that can be related to breast cancer, as well as other breast as well as other cancers. And it's in much more affordable. The company that we use in the office, the most out of pocket cost is $250, which still is expensive, but four years ago, it could be up to $4,000. So it's becoming much more accessible and much more well known to undergo genetic testing that we offer it to all of our breast cancer patients, as well as all of our high risk patients, such as yourself, giving your family history and your mom's diagnosis at such a young age. So, so many things that are out there that I think the public doesn't really know about. And that's the whole point of the podcast is to just try and let people know kind of what your journey was. And especially with genetic testing, the other thing you mentioned is how family members don't want to know. So we always recommend genetic testing for all first degree relatives to those that have a mutation. So like your cousins, the aunts, and the uncles, your siblings, they're all first degree relatives and would warrant genetic testing. And unfortunately, we do find in the office that either patients are one of two camps, ignorance is bliss, or knowledge is power. And your mindset knowledge was power. And the more you knew, and the more you had control the situation made you feel better about going forward, whereas other folks just really don't want to know.

Unknown Speaker  12:36  
For sure, absolutely. Yeah, that's 100% a lot with my whole entire family, which was which is surprising to me, you know, that that that is the case, but you know, to each their own, I guess.

Unknown Speaker  12:47  
Exactly. So you started to mention, you know, you are ready to have your breast removed. That was just that's what's going to happen, but then figuring out the path to get there was the next step. At what point you know, you mentioned you have two children. So at what point, you know, before children during children, did you breastfeed? When did you feel like okay, I'm now mentally and physically ready to go forward with surgery.

Unknown Speaker  13:09  
So I'm trying to think so I had the genetic testing done. It wasn't right away. After my mom got diagnosed, it was probably around I would say, maybe six years ago, it was a little bit late because my after it was after, like my cousin and my uncle were diagnosed. Um, so the first thing was, you know, Yes, okay. I was like, I had my babies, you know, I was I breastfed, and I did all of those things. And I knew that I was done having children. So that kind of helped as well, like knowing, okay, like, I'm done, like, my body is done with my kids. So then basically, I knew that I had to start researching. So one of my college roommates from Michigan State, I had talked to her because her and her two sisters all had the bracket gene. And the one she was a young mom with kids. And she found out she got diagnosed with cancer. And then she found out that she had the gene, her sisters all had it. And they all three, all three of them had the rest removed. And two of them was, you know, preventative. So they did a ton of research. There were conferences that they went to, like in Florida, and I mean, all kinds of things that they did, because they had just such a huge support system. And it was amazing. So I had a really great advocate with her. Like, I was able to talk to her and get a lot of information. But it was like I was sitting on this for like, a couple years like okay, like I know this is gonna probably cost me some money. I know that this is going to be a big thing. So like, Where am I at my job? What am I going to do this I kind of knew was in the back of my mind. So that was kind of hard. Like it was always back there like okay, what am I going to do this? So I had contacted my friend she had just finished her surgery, she looked amazing, which was I was like, Oh my gosh, like what so what did you do? So I was talking to Her, and I've learned about her journey, and you know, how she all the places she went to she, I mean, she went to these conferences, I mean, she was like, there's places you can do this, you can see people that had surgery, like surgery, and you can, you know, feel their breasts and you can see what it looks like. And they are like all about it, you can, so you have all the options, you know, for for what is best for you. And she had a great experience. So I researched I, you know, like my husband and I, we actually we paid, you know, probably about 20,000 out of pocket. So we we knew we had to refinance our house to be able to afford that. And, and that was okay. My husband was like, behind me 100% of the time, he was like, This is what you need to do for you. And so my, my whole journey with that was I, I wanted to make sure that when I had the surgery, I wanted to feel like myself. And I knew that, you know, and I know some people thought, Well, okay, like, why are you going, you know, I so far away, which I guess I didn't touch on that. I ended up going to New Orleans, because there is a surgeon that was offering a specialized service that, you know, we didn't have here, because I had heard you know about other, you know, people surgeries, and I've seen my mom's and I knew that I'm young enough, where if I'm preventative, and I have a little bit of time, I have time to make the right decision for me and what what is best. So this surgery, I ended up going the surgeon is in New Orleans and I went with a surgery that was going to it's called I can't even pronounce it right if it's like it's di EP like a flap surgery deep, deep flap, there you go, deep flap. And so what it was they ended up cutting me they will they look at your body. So I sent him pictures, my surgeon's pictures, and he was looking at my body. And basically what it was was he wanted to once you remove my breasts, instead of he would do small implants, but also part of my own tissue that he would get from other parts of my body. So he was taking a picture for me like what would the best case scenario and obviously I had children. So he said, like you have some extra skiff mer, like in the front, like in your stomach. That would be good. So I thought, Okay, that sounds good. So basically, when I went down there, you know, they, he ended up cutting me, you know, from hip to hip, but you know, it was very low, I can still wear a bathing suit. And you can't even tell if I'm wearing like a bathing suit that's covering it. And he took my tissue from that area stitched me up, and you know, did cut me underneath my breast. If you look at my breast, like I have my nipples, you can't, you would never look at my breast and think that I ever had a reconstruction surgery. And I did that because one, I wanted to feel like myself, but I wanted to have a more natural look, I wanted to, you know, just to be happy with the overall because I knew I was, you know, hopefully going to be living for a long time. And that, you know, I didn't want to look batched I guess

Unknown Speaker  18:07  
you wanted to feel like yourself, as you said already. Right. Right. Well, and I think, you know, we kind of skipped ahead a little bit towards surgery. But one of the things when it comes to the genetic mutation, you said you had the ATM mutation. And as you mentioned, your risk of breast cancer is about 40%. With an ATM mutation. When you look at abraca one and two mutation, the risk can be anywhere from 60 to 80%. So there are ladies that with the ATM mutation that will not undergo prophylactic surgery or prophylactic mastectomy like you had and just continue with close observation. And so as a high risk breast cancer surgeon, one of the things we'll see is ladies in your similar position that they're not quite ready to go forward with surgery yet. So we talked to them about high risk breast cancer screening where they'll get a mammogram every year as well as a breast MRI, and then an exam by a clinician starting at age 35. So you don't always have to go forward with surgery, you do have close observation options. But the good thing also is that when you do elect to go forward with surgery, you have lots of options, as you mentioned, so one of the facilities that you went to down in New Orleans, they do specialize in the deep flaps, which is using your own tissues essentially to recreate and reconstruct the breast and they can also do a small implant at that time. And they do do nipple sparing mastectomy, which we also do here locally. Where they do they make the incision in the inframammary fold and keep all of the nipple skin content and then put the implant in subcutaneous tissues under that. So like you said, you could basically look at you and think maybe you just had a breast lift from the incision sites, but otherwise you really wouldn't know any different. It's important and you don't have to comment on this. But most of the time when we do nipple sparing mastectomies, you don't retain any of your nipple sensation or nipple function. It's just a purely cosmetic feature. For those ladies that can't spare their nipple, oftentimes we'll talk to them about nipple reconstruction or also nipple type. doing when you brought up refinancing your house, obviously, that's a huge financial issue. It's a huge financial decision to make, especially as with a family, but was the actual prophylactic portion, the actual mastectomy is covered by insurance or the whole thing was out of pocket?

Unknown Speaker  20:18  
That is actually a really good question. Um, I don't, I can't exactly. I don't, I can't give you the exact answer. Because when I was talking with the hospital down there, they my insurance did cover because it was like, out of network. So basically, I would have to pay, you know, they had their own hospital there, so, and some of my expenses were in network with them, as well. So I had to pay like the out of pocket fee, that was 20. That was like, 20 grand, and then they paid and then they paid 80%. And then of everything that was not, that was out of network, and then I paid the other 20. So then there was like, a few little fees like, after that, but I in relation to like exactly how much they like I don't, I think that was just everything I don't really know, because I had and I had two surgeries, because I had the the first one, I went and had the and he reconstructed right then so I had the they removed my breasts and did the reconstruction. You know, they did, you know, everything from my company, hip, and all of that the second time, and not everyone chooses to go back a second time, some even do a third. The second time is kind of like a like a fixer upper. Like, you know, sometimes where if you're like, Oh, I think this is like a little to the left, or I want you to bring you know, the scar down a little bit more, you know, they're able to kind of like fix it, which to me was like really important, because that's, you know, I really liked that part. Because that's kind of where I was like, I feel more comfortable with my within my own skin. But I will say you did you did mention a little bit about the you know, the nipple sparing and all of that. I will tell you that that was one of my concerns. I you know about the sensitivity not having that. And that's okay. And it was I was a little bit nervous. And but I don't and I don't I haven't had my I've been out of surgery now almost two years in February. And I haven't had any of the sensitivity, but it's actually a lot easier than I thought it would be. So that's been okay.

Unknown Speaker  22:24  
Yeah, I think a lot of that is just counseling the patients of what to expect. I think it's so important for everybody to hear what you went through so they know what their options are. And also important to touch on that in the state of Michigan, specifically, prophylactic mastectomy with a genetic mutation is covered by insurance. So when we see ladies in the office that are similar to yourself that newly found out that they have a mutation or maybe they've known about it for a long time, we do have a long discussion with them about their surgical options, which do consist of a prophylactic mastectomy, which can be followed by immediate breast reconstruction. I always tell patients that reconstruction is a personal choice. Not everybody has to but it is covered by insurance. So both our portion from the prophylactic mastectomy side as well as the plastic surgery portion is typically covered by insurance. Obviously, everybody's subject to their deductible or out of pocket costs. And with you going into another state, I'm sure there was higher fees there. But for the most part, insurance does covered it. So it's always nice to know that you have options. Now that you have been a couple years out, how is your new normal? How are things going now, you know, you mentioned that you healed? Well, your surgeries went well? Do you feel different? Or tell us a little bit about your recovery?

Unknown Speaker  23:35  
Um, yeah, I mean, honestly, now, like my day today, you know, I feel I'm very, like, I'm very used to it, I would say, the things that are different for me, Well, first, the first part about my recovery was like waiting to work out. And when I was able to, like, get back to being physically active, I just realized, you know, how much you know, strength I had lost and just like a different feeling. Like, if I'm putting weights above my head, sometimes I was like, oh, wow, like, Okay, this feels a little bit different. But then my body was like, getting used to it and like, those types of things were were okay. I would say, I have, like, there's a few times when I have like, no, like, where my where I was cut, especially, like, from what I like hip to hip when I was cut down there. I have a little bit of like, sensitivity where, you know if i mean like, if my jeans tug on it really hard or something like oh, that can that can hurt a little bit or I might have some like nerve pain, where I can feel like if it feels like I have to itch something and then I don't but I cannot touch it like it does doesn't go away. But as far as my breasts go, to be honest, I don't feel like anything like they are. They are fine. They're there. And they it's totally normal. Like it feels very, very normal to me. So I mean, it's like my new normal and I don't, it doesn't, they don't look different to me. Like I I am I look in the mirror and I'm like, oh, okay, cool. And moving in.

Unknown Speaker  25:03  
Yeah. And from a preventative perspective, your only real job now is just a self breast exam. And you don't really have any diagnostic imaging, so you don't need mammograms or any imaging going forward. Once you have the mastectomy,

Unknown Speaker  25:16  
yes, which I was, because that's what I was doing, I was doing the, you know, the mammogram every six months, and then a breast MRI every, you know, six months, so, I was really happy to, you know, not have to go through that anymore. Because to me, I mean, in all honesty, I know that my chances, you know, were 40%, which I actually a little bit lower, because when at first when I first got told I have the mutation, they told me it was a little bit higher. So I think they know more about it now that your chances lowered, which is wonderful. But to me, I said, You know, I thought to myself, I just, it wasn't like, you know, if I was going to get breast cancer in my head, it was always like, when just because I knew, you know, it just happens so much. Now, it seems like I just feel like I you know, I know so many people that have been touched by cancer, and specifically breast cancer that I'm like, gosh, you know, like, you know, whatever, whatever it is, it just felt like got it. To me, it felt like, you know, when I was gonna get it not like, if so that was that to me. I was like, nope, you know, I'm good.

Unknown Speaker  26:20  
Well, and there was also probably significant anxiety related to all of the testing that you had to had to do every time wondering, okay, is this gonna be the time that they find something or see something, you know, and so now, knowing that you don't have to go through with that for the next 60 years has to be somewhat of a relief. Oh,

Unknown Speaker  26:37  
I mean, a huge like I after, like, my last surgery, and I thought, I am done with surgery and and knowing that, like, I, I'm not going to get breast cancer, and if I mean, like the 1% of chance that I have, like it is so would, would be so noticeable, and so quick that I'm like, I it's a huge relief for me that I just don't ever have to worry about that in the future.

Unknown Speaker  26:59  
Well, well. And I should also put a personal plug that we go to the same gym and you still do great burpees. So you did retain a lot of those abdominal walls. Well, thank you so much for joining us today. I think we've touched on a ton of important topics and things that are going to be super valuable for others to listen to. Your journey is definitely a unique one. But unfortunately, there are lots of people out there that can totally relate to what you went through. So thank you so much for taking the time to spend with me this evening. Absolutely.

Unknown Speaker  27:27  
Thank you for having me.

Unknown Speaker  27:28  
Well, thank you everyone for listening to the rest of everything Podcast. I am Dr. Ashley Richardson. And for any additional info, please visit our website at compbreastcare.com Thank you.

Unknown Speaker  27:38  
You've been listening to the breast of everything podcast with your host and board certified breast surgeon, Dr. Ashley Richardson of comprehensive breast care. If you have a subject you would like the surgeons to discuss, please email your suggestions online at comp breast care. com. The doctors want to hear from you. The views thoughts and opinions shared in this podcast are intended for general education and informational purposes only and should not be substituted for medical advice, treatment or care from your physician or healthcare provider. Always consult your healthcare provider first.