At 34, Dana Bushman and her husband moved from New York City to the California with plans to start a new, less-stressful life on the west coast. But within days of moving across the country, she got a phone call from her Dad: I just found out that I have a genetic mutation called BRCA1, he told her, and I might have passed it on to you. This set off a chain of events that led her to get her breasts, ovaries, and fallopian tubes removed by the time she was 35, just a couple of months later. Weeks after her second and final surgery, she talked with us about her decision, and what hereditary cancer risk means.
The following is her story as told to Blisstree:
Discovering “The Cancer Gene”
When my father first told me I needed to get tested for BRCA1, I really didn’t think that much about it. I thought ‘well I’ll really just do this to appease my parents,’ because they started bugging me about it and I wanted to get them off my back. So I had the test done and of course it came back positive. My genetic counselor explained that because I carry this known genetic mutation combined with a strong family history of cancer that my lifetime risk of developing breast cancer was almost 90%. As if that wasn’t enough, the gene was also associated with an up to 70% chance of developing ovarian cancer.
In a nutshell, testing positive for BRCA1 means that you have a mutation in a tumor suppressor gene which is connected to an unusually high occurrence of both breast and ovarian cancer. While there are a couple of these known genetic mutations, BRCA1 specifically is associated with some particular nefarious traits such as very early onset and triple negative (very aggressive) cancer.
At first it didn’t really sink in. You think: That’s not really the sort of thing that’s gonna happen to me, or Well I’m really healthy, I eat organically, I am a yoga teacher, you know… I’m not the type of person who’s supposed to get cancer, so it won’t be me. But the more I started researching these genes, the clearer it seemed that no matter what I did in my personal life, there’s only so much you can spite your genetics. It’s like walking around with grenades inside your body and wondering when they are going to go off.
My father’s mother was diagnosed with ovarian cancer at 35 and breast cancer a few years later. She died when he was around 9 years old and his father remarried shortly thereafter, so he didn’t know much about his mother and her side of the family – thus our family history was kind of muddled. When we found out that we had the gene, my father started crusading through our genealogy and found out more details – that my grandmother had five sisters, and from what we can tell four out of six of them had died of either breast or ovarian cancer (or both!) by the time they were around 40 years old. One of the other sisters we have no information on but the 5th sister did live to be about 70 years old, although interestingly enough it seems like she also had the BRCA1 gene. We are pretty sure of this as her children got breast cancer and her children’s children just came back positive for the BRCA1 gene. So, as my doctors put it, it’s a very deep penetration of the gene: Theoretically, you have a 50/50 chance of getting the gene, but it seems like much more than half of the people in my family inherited it.
This flood of information was very unsettling for me, and especially my father who felt some guilt about passing this gene along to me. And I felt angry: I’d been regularly seeing a top GYN in New York who told me every year that I wasn’t at high risk because cancer couldn’t be passed down through my father’s side. There’s so much misinformation and so many misconceptions. We were finding out about family members that we never knew existed, and so many lost their lives to this gene or are battling it in some way. It started to feel pretty inevitable that this was what’s in my very near future.
A Crash-Course In Cancer
After I picked myself up off the floor, I got what I like to call my “Master’s Degree in Cancer.” It was a long road filled with more information than I ever wanted to know about this disease. I did a lot of research, read tons of books and studies online and spent a lot of time on the message boards and support/advocacy site. People always say to “get a second opinion” – well I got 22 of them! I had 22 consultations with various oncological surgeons and specialists. I was waiting for one of them to say “you don’t have to do anything” or “don’t worry about it,” but every single one said the same thing: That I have a strong family history and very aggressive gene which, combined with the fact that I was the same age that my grandmother’s was at her diagnosis, meant the recommendation was to have prophylactic bilateral mastectomy and get my ovaries and fallopian tubes removed by the time I turned 35, which was just a couple of months away.
At first I thought it was crazy. Why would I hack off perfectly fine body parts when I didn’t have cancer? But then I got involved in a couple of great organizations that focus on people with hereditary breast and ovarian cancer. One of them is called Facing Our Risk of Cancer Empowered (FORCE), which is for all age groups and for who either have the gene or don’t but regardless there is a strong family history of breast and ovarian cancer – there is a good sized group who got cancer first and then later found out they carried a genetic mutation. The other group is called Bright Pink, which focused specifically on young ladies who are at high risk for these cancers. Both groups provide knowledge and advocacy as well as support for people in my situation.
In talking to probably hundreds of women, I heard so many say: “If I had known that I had this gene beforehand, I would have had my breasts and ovaries removed because it would have been so much better than having cancer, or worse, dying from it.” And many women told me, “I knew I had the gene, but I was thinking I might want to have another kid,” or “things got too busy at work and I just thought ‘I’ll do it next year’,” and then boom–they’re diagnosed, and kicking themselves for not getting insurance before their house burned down. The general consensus was that you can live without your breasts and ovaries, but you can’t necessarily live with this cancer diagnosis.
There are a lot of women who feel comfortable with “active surveillance,” which means getting exams every six months to watch for changes, but when I went for my first series of tests, they found that I had very dense breast tissue, which increases cancer risk and makes it harder to detect. They also saw something that was potentially worrisome; they gave me a biopsy and said it wasn’t cancer, but an abnormal cell change that could be precancerous and should be biopsied again in three months. And at the same time, I was getting screened for ovarian cancer and the same thing happened: They found troubling cysts and anomalies, so I had to go in for several different scans, which is in and of itself nerve-racking and upsetting.
Basically I was dealing a type of precancerous cell change in my breasts and ovaries. One doctors said: “It’s not question of whether you’ll get cancer; it’s a question of when.” I took this all as a giant sign from the universe saying: You have to go through with these surgeries, there’s no grey area, just do it.