BRCA in the Family

My BRCA mutation comes down from my father's side. My Great Grandmother and two of her sisters died from ovarian cancer in middle age. My Grandmother Amy died from ovarian cancer at age 43. My Aunt Ellen had her ovaries, tubes and uterus removed prophylactically at 30 years old (thank you doctor!!). Even though removing the ovaries reduces risk for breast cancer by half, she got breast cancer (estrogen receptive) at age 48, and a separate second breast cancer (triple negative) at age 67. Previous to my Aunt Ellen, the women in my family did not live long enough to get breast cancer because they died from ovarian cancer first.

When I was growing up doctors would tell me that I did not need to worry about the cancers on my father's side. I was always skeptical about that advice.  My Aunt Ellen was the first in our family to be tested for the mutation and I found myself relieved that there was an actual thing that could be identified.  After my Aunt tested positive in 2007 I tried to get tested too. I was in graduate school and the medical director (a doctor) of the health center opposed the idea. He actually asked me "What if it is negative?"  Without his support, the school insurance company would not test me, even with my family history. During this time, I had an excisional biopsy of a mass in my breast that had shown some abnormal cells from a core needle biopsy. The pathology was normal but the process of mammogram, biopsy, and surgery to remove the mass was very stressful. It was painful, too.

My husband and I decided to forgo the school's insurance for me and I got coverage through his employment.  Insurance still would not test me unless my Dad got tested and was positive for the mutation too.  So he did, and he is. Thank you Daddy!  Men who carry the mutation are at higher risk for certain cancers, too, although not at the same high risk levels that women carriers are (I am not sure about prostate cancer...need to look that up again). Two years later (2009), I was finally able to get tested. I went through genetic counseling before and after testing so that I would fully understand what a positive result meant.  The genetic counselor was very grave as he told me the news.  I was holding and breastfeeding my six month old daughter during my appointment with him.  She has a 50 percent chance of inheriting the mutation, as does her little sister who was yet to come.  The counselor asked how I felt about the news and of course I was disappointed to have it, but not surprised. I would have been more surprised had I tested negative.  Ever since I was a young teen I have considered myself high risk for ovarian cancer. Now I just had to wrap my head around the rest of the risks.