Adam Walker (00:00):
This program has been made possible through the support of an independent grant from Daiichi Sankyo, Inc.
Adam Walker (00:09):
From Susan G Komen. This is real pink, a podcast exploring real stories, struggles, and triumphs related to breast cancer. We’re taking the conversation from the doctor’s office to your living room.
Adam Walker (00:22):
BRACA mutations are hereditary cancer mutations that significantly elevate the risk of developing breast cancer and ovarian cancer. One of the reasons to undergo genetic testing is when a family member such as a parent or sibling is diagnosed with breast cancer at a young age. This is the story of today’s guest, Erica Stallings underwent screening for BRACA genetic mutation. And what she learned throughout her journey was both eye-opening and life-changing, she has become an active patient advocate for increasing awareness of hereditary breast cancer among women of color, and is here today to share her story. Erica, welcome to the show.
Erika Stallings (00:59):
Thank you so much for having me as a guest.
Adam Walker (01:02):
Well, I’m so happy to meet you and get to talk with you and, and really just to hear your story I understand that your mother was diagnosed with breast cancer twice. So walk us through that. What was her experience like and how old were you during those experiences?
Erika Stallings (01:19):
Yes. So the first time my my mom was diagnosed with breast cancer. This was in 1993. And I note that because it was a couple of years before scientists had actually discovered the BRC one and two genes. And the fact that there were mutations in those genes that increase your risk of developing breasts and as well as other types of cancer. And my mom was only 28 at the time, which is also something I want to emphasize because it’s highly unusual to have breast cancer at that age. So my mom’s 28, she finds her breast cancer doing a self exam in the shower. It turns out to be stage one. She has a lumpectomy, she goes through chemotherapy and radiation, and I’m at an eight at the time. So I know that my mom is sick, but I don’t really understand what cancer is.
Erika Stallings (02:08):
And so after my mom did all for treatment, she was in remission for about 14 years, you know, and as I got older and I became a teenager when I kind of had a better understanding of like, oh, my mom’s had breast cancer. And I kind of vaguely knew that that might have implications for me in terms of like, Hey, maybe I have to start my mammograms earlier or something like that. And then my senior year of college, I went to, I was, I studied at university of North Carolina at chapel hill. My mom finds, you know, was pretty diligent about still doing multi self exam. She finds another lump. It turns out to be like a second breast cancer diagnosis in a different breast. And she also was diagnosed with triple negative breast cancer, which is a more aggressive form of breast cancer. And it is more common in black women. And because I was going to school at UNC, which a really great cancer center, she decided to do her treatment there. And when she’s at UNC, her oncologist said to her, well, you’ve had breast cancer twice. First time, age, 28, second time at the age of 42. And this was highly unusual. No, we I’m going to refer you to genetic counseling and testing. And that’s when we learned that my mom carries a BRC mutation and I was 21 at the time. Wow. I’m learning. I believe that she was a carrier.
Adam Walker (03:30):
And so what, how did that impact you? I mean, did you make an immediate decision to get tested once she was diagnosed the second time? And if so, what led to that decision?
Erika Stallings (03:41):
Yes, I did not make the decision to get tested at that point. I think part of it was, you know, sort of dealing with all the emotions about my mom having cancer again, you know, because in my mind I’m like, oh, my mom’s been in remission for 14 years. She’s considered to be cured at that point. And she ended up having a double mastectomy because of the fact that she was a BRC mutation carrier. And then she also eventually had her ovaries removed as well to deal with the ovarian cancer risk. I was also graduating in college and then I was moving to Washington DC to go to law school. So it didn’t feel like a good time to undergo testing. And actually now I know this now most physicians don’t recommend that you undergo testing before the age of 25, mostly because of steadily like emotional impact and choices you have to make.
Erika Stallings (04:29):
So I decided that I put it off and I’m sorry, I went to law school in DC. I’m working as an attorney at a large law firm. And when I turned 28, which was, you know, the age of my mom has been diagnosed. So I was like, all right, I probably need to figure out like what’s going on with this breast cancer gene situation. So I made an appointment. I made, it was interesting. I made an appointment at Memorial Sloan Kettering, and they had a really long wait list to see a genetic counselor because there was a shortage of genetic counselors in the United States. So I decided someone referred me to this really great oncologist at NYU. And I had my genetic counseling and testing done in June, 2014. And I, and at that point I had, I was 29.
Adam Walker (05:13):
Okay. And what if you don’t, if you don’t mind me asking what were the results?
Erika Stallings (05:18):
Yeah, so I learned, so I had the testing done and just for anyone who’s listening, who’s not familiar with genetic counseling and testing. What happens during the appointment is that you actually go over your family history of various cancers, both on your mom’s side of the family and your dad’s side of the family. And some of the information that this significant is, you know, who’s had cancer or what type of cancer, like age of diagnosis. And then in my, in my instance, I also brought a copy of my mom’s her test results. Because if you carry, if you have a mutation, you have a 50% chance of passing it onto your child’s. So what they’re looking for for someone like me is they’re looking to see if I inherited that specific mutation, right. So they did a blood draw. I get the results three weeks later. And I found out that I had inherited the BRC two mutation from my mom. Hmm.
Adam Walker (06:13):
Wow. That’s, that’s tough. And, and I’d imagine that, I mean, even with your family history, getting a positive test result was probably pretty shocking. I mean, who is in your support system to help you through that and, and sort of, how did you deal with that?
Erika Stallings (06:27):
Yeah. I tell people often when I talk about this experience, that even if you kind of, your rational part of your brain knows that you have a 50% chance of having it. And if, even if you’ve gone online and done research, you know, nothing I think can mentally or emotionally prepare you to hear that information in terms of my support system, I feel really fortunate in that the team that I had it in, what you was just really upstate standing, you know, the oncologist who did my genetic counseling testing and her name is Julia Smith. She works with a lot of women in their twenties and thirties who are, high-risk either due to just a family history or because they carry a hereditary cancer mutation. So, and she was a great resource. And I’m also like oddly fortunate that my college roommate and best friend is a doctor who is married to a cancer researcher.
Speaker 4 (07:20):
Erika Stallings (07:21):
I know, right. I didn’t know when we met, you know, back in 2003, like how important that friendship would be. So you know, her and her husband were both like great resources. I was also really fortunate, you know, I had a couple of friends from law school who w you know, who lived in New York. I was doing everything in New York, you know, who would go to appointments with me and everything like that. So that’s great. Yeah. I really, it obviously my mom you know, so yeah, I was really fortunate to just have a really supportive circle of family and friends.
Adam Walker (07:54):
That’s so important. You know, I’ve talked to so many people on this show about that, but just, just being vulnerable and being willing to be helped by family and friends is so critical to getting through difficult things. And so it’s a talk next about maybe what were the implications of this test result? What happened next? What did that look like from, from doctor’s appointments to medical bills to just sort of everything else?
Erika Stallings (08:17):
Yeah. So, so one thing, you know, again, to maybe educate listeners who are not as familiar with the world of hereditary cancer genetics. So when you have a beer CA I’m a curious ATM mutation, and so it’s not just associated with high risk of developing breast cancer. It also puts you at a higher risk for developing ovarian cancer, colon cancer, pink, pancreatic cancer, and melanoma. And when I say a high risk of developing breast cancer, you know, the average person’s risk of developing breast cancer is about 12 to 13%. But for individuals who carry a BRC BRC, two mutation, it goes up it’s somewhere like 60 to 70% lifetime risk. So what that meant. So getting the news, what that meant for me from like a very immediate standpoint was when, you know, the doctors had looked at my test results and they looked at my mom’s and my mom’s history of when she had had breast cancer.
Erika Stallings (09:11):
And so their recommendation to me was to have a preventative mastectomy as soon, like as soon as I could schedule it, essentially. Yeah. And so that meant, you know, first getting, you know, one having to get mammograms and MRIs to make sure that there were already in the cancer cells there. And then it was going through the process of like finding the breast surgeon and the plastic surgeon who would do the, who would actually do the mastectomy and then actually kind of figuring out like what I knew I wanted to undergo reconstruction. So figuring out like what the reconstruction process was going to be like. So I think really starting, I mean, I got the test results. I got the results in July of 2014 and pretty much between like August, 2014 and December, 2014, I felt like I was at the doctor like once a week, because in addition to like scheduling and fare it out and effecting me, I had to start seeing someone I had to start seeing more providers to help me manage all the other risks. So for the ovarian, like I’m at higher risk for developing ovarian cancer. So now I see, you know, a specialist, OB GYN, you know, who does, who like does a trans vaginal ultrasound every six months. And she does blood work to see if there’s any elevated markers. I started seeing a dermatologist to check for any signs of melanoma. I started seeing an ophthalmologist because you, most common places you get melanoma are actually in your eyes and in your skin. So I learned something new today. I mean, I learned something new.
Adam Walker (10:38):
I learned something new today. Okay. All right.
Erika Stallings (10:41):
I do not have to start colon cancer screening for another couple of years. So because I’m 36. So I think I’ll start, I’m 38 and I have met with a specialist about the pancreatic cancer risks, but there’s really not much screening that they’re able to do for that. Right. And I know you asked me about, you know, you asked me about bills. So it was really fortunate in that I had pretty great health insurance through my job at the firm, and it is covered, you know, because I was having the mastectomy due to the BRC mutation, you know, that was covered by insurance, including the, the reconstruction process. So, you know, I think with my insurance given, it was like an 80 20, so like, you know, insurance covered 80%. I wasn’t responsible for the remaining 20%, but then once I hit, like, you know, the deductible, thank you, Obamacare Obamacare puts them in insurance. There’s like only so much. There’s like Adam pocket maximum. So thank you very much. Yeah. So, you know, I think it was, I owed somewhere between like three to $4,000 that I basically put on like a payment plan and I was like, yeah, I’ll pay it. Okay. Yeah, no, that’s
Adam Walker (11:47):
Great. I appreciate you sharing that. It’s really helpful. Helpful overview. And so you mentioned, you mentioned to all the doctors and doing all the checks and all the testing, everything else. What, what other courses of action did you decide to take with your doctors?
Erika Stallings (12:00):
Yeah, so, you know, in addition to having them effected me and, and when I, the type of mess like may had, I had, what’s known as like a nipple-sparing mastectomy, which, you know, in 2014 was it was new ish or they had kind of finally like done the research. They felt comfortable doing that. And I also had, what’s known as like direct to implant surgery. So I had, you know, I had my mastectomy and I actually was fortunate that I woke up with the implants or the reconstruction process already completed. So I, you know, I don’t have a family history of ovarian cancer. So in terms of dealing with the ovarian cancer risk right now, I just do this sort of surveillance every six months. Right. You know, the common sort of recommendation for people having VRC two mutations is to have their ovaries removed around like age 30, nine, 40. I feel pretty hopeful. There is a lot of research being done. People like finances actually think ovarian cancer first develops in the fallopian tubes and then migrates to the ovary. So they are doing some clinical trials to see, you know, what happens if you just take out the fallopian tubes and then take the ovaries out after the patient has gone through or natural menopause. So I’m hoping that that science gets better. I see. And I see my, you know, I see my dermatologist and the absent ophthalmologist once a year for the screenings.
Adam Walker (13:23):
Okay. And so I mentioned this in the intro and I want to, I want to dive into that just a little bit here. So I know you have the goal of raising awareness particular as it relates to health disparities. Can you just tell me a little bit about the work that you’ve done in that area?
Erika Stallings (13:38):
Yeah. So I don’t, I don’t think this can be in the intro, so I’m a lawyer by day. And so I think that means that I like to read, I kind of just like really like to dive into stuff. And so when I was going through my own experience of one of that, I had this mutation and preparing for surgery, I was, I was, I started to kind of go online and see if I could find other patient’s stories to give me information. And I didn’t see, I mean, I didn’t find any from women of color, sort of talking about this, this experience of being what’s called a previvor, which is someone who cares, but it’s not how to active cancer diagnosis. So I was like, well, that can’t be possible. It was like, oh, that can’t be possible. But I decided to write about my own experience in 2014 when I was sort of preparing for surgery and I just started doing more research and really learning that there are, I mean, I think we know that there are racial disparities that exist with respect to breast cancer in the United States.
Erika Stallings (14:32):
But even when we’re talking about this, like who actually gets access to genetic counseling and testing, there are, there are racial disparities as well, right? Like black women are much less likely to undergo genetic counseling testing even when they meet the national criteria for who should be referred to genetic counseling testing. But we know, right. If you, if you know that this is population of people who are super high risk, and if you can find them early and either have them take risks, reducing procedures like I did, or at least like, make sure that they’re undergoing surveillance, you can either, you know, you can catch cancer when it’s much more treatable. So in terms of the work that I’ve done, I do a lot of writing and speaking on the topic, you know, just, you know, trying to raise awareness. And some of that includes, you know, like because I’m a lawyer, a lot of times I’ll work with like bar associations or like women’s initiatives at law firms, like come in and do workshops about, you know, knowing you’re like, why is it important to know your family history of cancer?
Erika Stallings (15:34):
Why is it important if you do have a family history to undergo genetic counseling testing? What is that? What is a genetic counselor? You know, it’s not information that people have a lot of exposure to. And so I also work with, so the Basser center for beer CA is a research center at university of Pennsylvania. And the only thing they do is a research. They’re, you know, they’re trying to find a way to stop cancer is caused by BRC mutations. That’s the only thing that they research. So I’ve been involved with them in two ways. I am the founding co-chair of the young leadership council, which raises money for cancer research. So every year we do a variety of fundraising activities raised money, and then we pick a young investigator to donate those funds to because yeah, because often, you know, if you’re you’re new as a, for younger researchers, it can be harder to obtain grant funding.
Erika Stallings (16:27):
So we, that’s why we focus on that group. And then a few months ago, I helped them launch an initiative called black and BRC, which is to provide tailored information to black patients and their family is about hereditary cancer. So one of the things that we’re doing in June, June the week of June 17th is national black. I can’t, I’m not gonna remember it. It’s not how black cancer fam family week. So we’re doing a panel which I’m moderating, but it will be myself, a genetic counselor and oncologist, and a patient just really talking about how do you have these conversations about family health history? What happens in the genetic counselor, constant appointment? How do you find a genetic counselor? Does insurance cover it? If you, if you do have a mutation, how do you talk to your family about it? Right. So it’s really just trying to like, do the work all the time with people as possible.
Adam Walker (17:23):
That’s, that’s great. And so, and it’s just, it’s so important and I really appreciate that you’re doing that work. So last question, Erica, this has been so great. So informative, inspiring. If you could leave our audience with one piece of advice that you’ve learned along your journey, what would that advice be?
Erika Stallings (17:42):
Ooh, I think I’m going to cheat real quick and give too. I would say the first it’s like ask for help. And I talked about how important my support network was and really was, and this is all heart. Like if you were someone who’s dealing with a breast cancer diagnosis or you know, learning, you have a mutation, like it’s really heavy information and just like reaching out, letting people know what you need asking for help is super important. My other really quick one is, you know, I think people have to do it on their own timeline when they’re emotionally ready to do it. But I think there is a lot of power in like sharing your story and talking about your experience. You know, I find that so many people reach out to me because they’ve seen something that I’ve written or there’s this podcast, and that is very meaningful to me. Hmm.
Adam Walker (18:23):
That’s so great. And you’re right. I mean, the more you can share your story and inspire others and with the strength that you’ve had to go through this, the more, you know, the better outcomes they’ll have as well. Right. And that’s so, so, so important. Yeah. Wow. Okay. Well, Erica, this has been great. Thanks so much for joining me on the show today. Thank you so much for having me.
Adam Walker (18:52):
Thanks for listening to real pink, a weekly podcast by Susan G Komen for more episodes, visit real pink.com and.org for more on breast cancer. Visit komen.org. Make sure to check out at Susan G Komen on social media. I’m your host, Adam, you can find me on Twitter at AGA Walker or on my blog. Adam J walker.com.
Adam Walker (19:15):
This program has been made possible through the support of an independent grant from Daiichi Sankyo, Inc.