Briana

Age at interview: 28
Outline:

Briana has a strong, multi-generational, family history of breast cancer. Keenly aware of her risk, Briana tested positive for a mutation on her BRCA1 gene while in college and planned accordingly. After graduating, she joined the Peace Corps and then found a job with good health insurance, which covered her prophylactic mastectomy. Suspicious of having an implant, Briana sought flap reconstruction surgery, and found an out-of-state surgery clinic that specialized in flap reconstruction. Briana is now an advocate with a national genetic cancer advocacy organization and a graduate student in a health field.

Background:

Briana, age 28, is a single White woman, who lives alone, with her dog and cat in a Western city.

Cancer-Related Experience: Elevated risk

Type of Inherited Risk: Identified breast cancer mutation

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Briana, age 28, knew about breast cancer since childhood. Due to a very strong family history, Briana’s mother had a prophylactic mastectomy in the 1980s, even before her BRCA gene mutation was discovered. Briana remembers that her mother’s “breasts always looked different” because of the silicone implants, and openly worried about lumps, leakage, and whether the implants could mask or cause cancer. Her mother died of ovarian cancer when Briana was just 12. Briana was thus keenly aware of her own risk.

While in college, Briana had a female professor who became a mentor. She suggested that Briana talk to a colleague, who had been a “genetic counselor in a previous life.” After mapping the family cancer history, she suggested that Briana get a referral to genetic testing. At the age of 21, Briana tested positive for a mutation on her BRCA1 gene. She was “happy to know about it” so she could do “prophylaxis and live healthier.” Mastectomy was not recommended before age 25, so Briana was screened with annual mammograms and breast MRIs. After finishing up her undergraduate degree, she traveled and then went into the Peace Corps, noting they were “definitely things that I wanted to do” before her mastectomy. Upon returning from the Peace Corps she took a job at a company with good health insurance. “It was a very pragmatic decision,” she says, noting it covered costs for her bilateral prophylactic mastectomy.

Citing both the “ingrained trauma” her mother’s fear of silicone breasts and subsequent death—and her goal to travel to out-of-the way places—Briana sought a deep inferior epigastric perforators (DIEP) flap reconstruction surgery, which “uses your own body fat and tissue rather than implants to build new breasts.” Local providers told her she was “too skinny” and didn’t have the “right body type.” Not satisfied with their answers, she attended a conference of a national advocacy organization called Facing Our Risk of Cancer Empowered (FORCE). There she met women who were skinnier than she who had found surgeons specializing in flap reconstruction surgery. Against the advice of her local team, Briana traveled to have the flap reconstruction surgery. Fortunately, this specialty breast reconstruction clinic was within her insurance network and she found grant funding to cover additional costs.

Briana is now in graduate school in a health-related field and an advocate with FORCE. Her primary goal in choosing to have a prophylactic bilateral mastectomy at such a young age was to live a longer life with rich experiences—and not whether someone would want her. Briana, however, conceded that she chose reconstruction over “going flat.” She says she never really liked her “bigger and kind of saggy” breasts and can live with the big scar across her abdomen. Briana is next planning to address her risks for ovarian cancer. She urges women to get second opinions and advocate for what they want.

 

Briana’s childhood experiences with her mother’s cancer made her fatalistic about her own future.

Briana’s childhood experiences with her mother’s cancer made her fatalistic about her own future.

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I guess she got sick when I was eight. It was, it was a while that she was sick. And then, so I feel like my formative years were shaped by her being very sick, and having a very traumatic experience with cancer. So probably up until I was an older teenager, I just figured, oh, well, I'm just going to get it and die from it. There was no real understanding of like the physiology of the disease, and how it affects humans, or the genetics behind it. So I'd say it was, yeah, a really intense childhood view of cancer that led to a lot of fear. So then getting tested, and understanding the genetics and the risk I carry, and what I can do to minimize those risks, I guess, helps lower that fear.
Did you talk to-- I mean, was this cancer talked about in your family? Do you have other female relatives, or I guess male relatives, who might be affected by, by breast cancer?
Yeah. So we did talk about it. It was never something that was hush-hush, you don't talk about it, especially because-- I know some families, it's like ovarian cancer, and that's like, the woman parts, and you don’t talk about it.

 

Knowing her genetic status allows Briana to make informed health care choices.

Knowing her genetic status allows Briana to make informed health care choices.

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So I found it very helpful to know, OK, this is you have a 50/50-- based on your family history, we believe you have a 50/50 chance. This is if you are diagnosed with x type of mutation. This is your risk for certain cancers. And then this is what you can do, and this is what you can't do. So even before I decided to get testing done, I knew that, OK, if it comes back positive, then I'm going to pursue surgical prevention, and do every single thing that's available to me.

 

Briana’s genetic counselor helped her to understand her options based on what genetic tests may find.

Briana’s genetic counselor helped her to understand her options based on what genetic tests may find.

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So I found it very helpful to know, OK, this is you have a 50/50-- based on your family history, we believe you have a 50/50 chance. This is if you are diagnosed with x type of mutation. This is your risk for certain cancers. And then this is what you can do, and this is what you can't do.

 

After testing positive for a BRCA mutation, Briana waited until she was in a “really good situation” before having a prophylactic mastectomy (removal of breasts).

After testing positive for a BRCA mutation, Briana waited until she was in a “really good situation” before having a prophylactic mastectomy (removal of breasts).

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And so I finished up my undergrad, and then went and traveled, and then went into the Peace Corps. And just tried to meet, I guess, all of my goals and all of my dreams, which I'm still doing. It wasn't like having a BRCA1 mutation and having to go through a prophylactic mastectomy was the end of everything, but there were definitely things that I wanted to do before focusing on that. So when I came back from the Peace Corps in [location], I got a job with a company. It was a very pragmatic decision to get a job with them and go somewhere that I knew was a private company that had good health insurance, that they already knew me, because I'd worked with them before. So it was all in all a really good situation. And I was able to get the surgery done. And then while I was actually-- while I was recovering from surgery, and beforehand, I was applying to grad school, and found out probably a week after my second surgery following the prophylactic mastectomy that I got into grad school. So yeah, that's, I guess, what led up to, you know, most recently-- six months ago-- the prophylactic mastectomy.

 

Briana says her insurance may cover only some of the screening her doctors recommend.

Briana says her insurance may cover only some of the screening her doctors recommend.

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I just switched insurances, so I'm going to have to find a new oncologist. I didn't think about that, but it's coming up on a year. And I want checkups once a year.
Yeah.
Because it’s great to have somebody else—you know, even though I’ve had a mastectomy, there’s still a risk that I get breast cancer.
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Right now, because I’m hired as a temporary employee, so I have health insurance through the ACA, through Obamacare. And what I have now is a preventative health plan. So that covers, you know, your yearly physical, and PAP smear for women. But that doesn't, that wouldn't include any of the like pelvic ultrasound, or the CA 125, or the-- I don't know if it would cover the dermatologist or not. So that's kind of terrifying for me right now. I really don't like that.

 

Briana is pleased with how her surgeons worked together.

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Briana is pleased with how her surgeons worked together.

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The center where I went was comprised of-- I don't know, maybe five plastic surgeons, each kind of with their own style, and only one oncologist, which actually, I was very hesitant about choosing that center to go to, because I didn't have an option. So I did-- I researched him. And I had a phone consult with him before the surgery, just to pick his brain. And I talked with patients who had gone to him before, and you know, like researched his work background very thoroughly to make sure that he wasn't just a friend of one of the plastic surgeons who came to work there because he wanted to live in [location], or something, you know. I didn't like that there weren't many options, that there weren't any options besides him. But after researching him, and talking with other people, I felt confident that he would do a very good job. Because I mean, you can talk all about the plastic surgery, and how your body looks, and the flap reconstructions, and how great your surgeon is. But when it gets down to it, it's about the mastectomy, and getting as much breast tissue as you can out to reduce your risk. So after assuring myself that, you know, I was comfortable with that decision, then yeah, I went there. So there was an oncologist. And then my main plastic surgeon, and then a second plastic surgeon scrubbed in, and helped with the, the flap reconstruction. So the whole surgery-- when I went to local doctors, they said it will be a 12- to 13-hour surgery. And when I went to this place, it was 6 and 1/2. It was really incredible.
So they knew how to work on skinny women.
Yeah, skinny women, and they knew how-- I mean, the surgeons had been working together. I think the oncologist had been there for about a year at that point. And then the plastic surgeons had been working together longer. They presented themselves as a very cohesive unit. And I think the surgery length and the results prove that.

 

Because she is so young, Briana says, it’s hard for her peers to get how she feels about mortality.

Because she is so young, Briana says, it’s hard for her peers to get how she feels about mortality.

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Yeah, you know, my friends—they're great friends and I love them. But when you're in your mid 20s, it's something that's really hard to relate to. And while my friends were there for me, and very willing to help out in whatever way they could, it wasn't like they had had the same life experience. So I can talk to them about my experience, but it's still kind of isolating, too, especially when, you know, they're focused on their wedding next spring, or the baby that they're having, or the new boyfriend, or-- it's just-- I guess I always felt like growing up, I was on a different plane than the rest of my friends, or maybe a different level. Because I realized my mortality so much younger, because of my mom dying and unders-- I guess I didn't understand the risk, but just this risk that I knew was there.

 

Briana describes how her dog helped keep her moving and motivated.

Briana describes how her dog helped keep her moving and motivated.

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But actually, one of the things that went through my mind when I was adopting this  really ugly, four-week-old puppy was, “I'm going to have her when I go through my surgeries. This will be great. She'll be a good support system.” 
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So I think that the dog, especially, gave me a lot of motivation to get out and go to the park. Because I really like going out with her, and going hiking, and walking around, taking her to the dog park.  
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I was staying with my mom's cousin, the family member that helped me out. And we would go for walks every day with the dog.  [NAME] would take the dog, because I wasn't strong enough. I mean, you see, she's 20 pounds. She's so tiny. And I didn't even have the strength to like hold onto her leash. So [NAME] would take her. And every day, we would just walk a little bit further. But it was that morning, we're going to take the dog out for a walk. And it got me out. And it got me excited to get out.  

 

Briana says her diagnosis motivated her to make a career change.

Briana says her diagnosis motivated her to make a career change.

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So when I applied for the internship that I'm a part of now working on a research study, I wrote a personal essay that talked about why I was making this big switch from agriculture, and having a fairly good job in-- that's a whole other story-- good jobs in agriculture, but like having a fairly good job in agriculture, switching over, you know to a very, you know entry-level position in health care, and going back for my Master's, in a fairly different field than public health. So I remember in my interview, we talked about it. And I kind of explained my interest in hereditary cancers, and modifiable life choices. So the premise on what I applied for grad school for, and for my job, is trying to work with low-income and under-served communities with surrounding knowledge, with looking at modifiable life choices and its impact on cancer.

 

Briana describes learning not just to accept a doctor’s authority.

Briana describes learning not just to accept a doctor’s authority.

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Yeah, I think that health care providers do send the wrong message sometimes based on their experiences. Because there was, before I went to the conference, I went in in the frame of mind thinking, “I won't be able to have a flap surgery. I'm going to have to settle for implants, even though this is something that significantly scares me, because I think there's still a higher risk associated with it.” And this person that I am supposed to be entrusting with my health, and my life, and my longevity is telling me no, you can't do something. I think it's very natural to just believe them, and want to believe them, and want to trust them. And so when I was able to do more research and get different opinions, it kind of makes that health care provider seem less trustworthy. And I understand that that's based on, on her experience and the, like her background. But I--
Her comfort level, too.
Yeah, her comfort level, and just the experiences that she's seen her patients go through. But I think that that proves a point, that maybe doctors need to be more well-rounded, too. Because there's lots of different experiences out there. 

 

Briana is active with FORCE, an advocacy organization focused on hereditary breast cancer.

Briana is active with FORCE, an advocacy organization focused on hereditary breast cancer.

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It's Facing Our Risk of Cancer Empowered. So it is a national, in the US, NGO that helps participants or constituents with hereditary breast and ovarian cancer, hereditary cancer syndromes, friends, families, find resources. I think the biggest thing that they are is a platform for resources. They break down journal articles into, you know, layperson language. They talk about policy. They have online message boards. They have local support groups. And that’s what I do. I'm a peer support group leader here in [location]. They have one-on-one peer navigation, where they like try to match you up. And I did this before I did my surgeries. Is I found a peer navigator-- somebody that was kind of my age that went through what I was thinking about going through. And I talked with a couple of them to get their experiences. And then, you know, I've mentioned this conference a couple of times. And that was a huge support for me. I mean, I was able to go-- at the time, I had just gotten back from Peace Corps, so I went on a scholarship, and got to sit in two days of classes, hearing doctors and researchers talk about the newest research that was out surrounding hereditary cancers. And I was able to like focus those classes on what I was about to do, which was the mastectomy. And then you know, I found my doctor there, too. So that was a really incredible support system for me. And then after my surgeries, actually at the conference last year, when I was finding my doctor and doing all of this preliminary pre-surgery work, I offered to volunteer with them, if there's anything that I could do to help the local support group here, kind of bolster it, and build it up, and make it stronger. And fortuitously, they were looking for another volunteer for the peer support group. So and that's what got me started with them, is just all of the resources and help that I had gotten from that group.

 

Briana notes the importance of not taking “no” for an answer, networking, and finding needed resources.

Briana notes the importance of not taking “no” for an answer, networking, and finding needed resources.

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Given the kind of range of experience you've had with your health care professionals, any kind of advice you might want to give, them?
Again, be a self-advocate for your health. Advocate, advocate. I mean, there are so many different insurance companies, and health systems, and private clinics. And, you know, people fall on the spectrum of having great health coverage to no health coverage. I mean, there is resources if you're willing to find them. Like, I was a year out of Peace Corps service, and had gotten out of school-- like I had zero savings. But I was still able to come out almost the same, even traveling and doing all of this stuff. I mean, if it's something that you really want to do, you just have to call all of the places, and all of the doctors, and just start talking to people. I mean, I found out about the big grant that I applied for through somebody networking, basically, through FORCE. I met somebody that told me about it. So just advocating, and researching, and networking.
Mm-hm. So that's the kind of advice you'd give to somebody who's just starting out on your journey.
Oh, yeah.