BRCA1 Story

I developed breast cancer at age 36. My surgeon at Johns Hopkins recommended a radical mastectomy followed by chemotherapy and radiation. I had the mastectomy on my 37th birthday in 1990. At that time he did not recommend reconstruction because it might mask a recurrence. My mother had had breast cancer at age 40 and survived cancer-free for 42 more years. So when I developed another primary cancer in the other breast at age 50 I assumed I got it from her. I had another mastectomy but it was caught early so I had no further treatment.
But my first cousin from New Orleans (on my father's side of the family) got breast cancer and had the genetic testing done. She was positve for the BRCA1 as was one of her sisters. She encouraged me to get tested but I put it off until this year. I had a comprehensive test done and I was positive for the same mutation that she had. So I am having my ovaries removed in November.
This was good for me but sadder news is that my daughter who is 31 was tested (the day after I watched "In the Family"!) She is also positive. She is married but has no children. We have an appointment with my oncologist to discuss her options. I am so sorry she has to make the decisions about what to do, but she tells me she is glad she knows. I pray that she never gets cancer and that she makes the right decisions.

Response to Joellenkash

I am so sorry for the horrible journey life has dealt to you. As a mom myself, I remember the day my test came back positive for a mutation to BRCA I. I recall thinking (with 4 people before me who had died from breast and/or ovarian cancer as well as 1 BC survivor) "Well, now I know why I got breast cancer at age 49!" That had sunk in only minutes before I thought about my two children, a boy (age 23) and a girl (age 19), as well as my brother, sister, and their adult children. My instinct to protect my children kicked in, and as I told my kids about the BRCA I mutation, I asked them if they wanted to test (and hoped secretly they would say yes). In retrospect, my mother died from ovarian cancer in 1998 and I found out afterward that she knew the test existed - but I did not. I presume she didn't want to test because she couldn't bear the thought of the possibility of passing it along to her children. I sort of took it differently - I wanted to give my children the tools they needed to make educated decisions about their lifestyles, their cancer risks, and give them the time they needed to absorb their result. They both tested positive.

The best thing I ever did was taking my children to the FORCE conference. Never will you ever find an organization as helpful as FORCE. The conferences are fantastic - and you will collect more information at one of these than anywhere else, and you'll do it surrounded by hundreds of men and women in the same boat.

If you haven't already done it, one of the best things you can do fairly soon is make an appointment with a genetic counselor. They can provide you with all of the details surrounding your test results. If you can hold off until next May, I would say the next thing that would benefit both you and your daughter is to come to the FORCE conference on May 16 and 17 in Orlando. At that conference, both of you can talk to researchers, GYNs, oncologists, plastic surgeons, etc. You will have the opportunity to see the best of the best in breast reconstruction by various plastic surgeons from around the country. You can register on-line at their website at Really - you would be stunned if you came (and bring your daughter!!).

There are 17 people in my family involved - 4 deceased, 12 have tested, 9 are positive, 3 negative, and one breast cancer survivor has not tested. My mother passed the mutation on to all 3 of her children, and we passed it along to 6 out of 7 of our children.

I know I feel differently about testing than my mother did. But, I would never have held her responsible for passing something on to me for which she had no control. I can take this bowl of lemons and use it as a tool to support those in my family; and hopefully, prevent any of them from getting cancer.

Feel free to contact me if you need support - I am in northern Virginia.

Good luck - and my thoughts are with you and your daughter.

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