I know what you're thinking. I thought it, too, before I was faced with this decision. I remember when my 1st cousin found out she had a BRCA1 mutation and decided to get a bilateral mastectomy and reconstruction in her late 40s. (She also had her ovaries and Fallopian tubes removed, like I did on July 12.) I thought, "Really? Isn't that reaction a bit extreme?" And then actress Angelina Jolie announced she had the same diagnosis and that she had the same prophylactic surgeries. Even then, I wondered why she would have her breasts removed. Isn't there a better option?
Then I was faced with this choice, and it turns out the decision was an easy one for me. I'm not a gambler. I'd rather give up some body parts in exchange for the peace of mind that I will most likely never have to deal with breast or ovarian cancer and will live a long life. Every time I thought about the "watchful monitoring" approach of getting a breast MRI and then 6 months later a mammogram every year for the rest of my life, I pictured myself saying "Is it now? Is it now?" And THEN, if I did get cancer, the thought of having to not only have a mastectomy but also have to deal with chemo....you get the picture.
Believe me, when you are faced with the data that shows 46% - 87% of women with my gene defect get breast cancer by the age of 70, that is a very scary number. And 39% - 63% get ovarian cancer by the age of 70. Those numbers are very startling. Shocking. I decided right away that I could live without my breasts and ovaries.
“Doctors will give you a lot of options, but nobody will tell you what to do."
- a BRCA1 gene variant carrier
I did go to a genetic counselor in June, even though I was pretty sure nothing she could say would change my mind. But I wanted to make sure I really understood what having a BRCA1 gene mutation meant. She did a personal risk assessment for me by plugging in data about my age, health, family history, etc., and told me that given that I am 61 and have not had cancer yet, I am likely on the very low end of those ranges. In fact, she says the risk model estimates my lifetime risk of breast cancer is probably more like 30% - 35%. I thought about that for a moment, but then realized my chances are still 1 in 3. I have never wavered in wanting to have the mastectomy.
Is it weird to think about having a part of your body chopped off? Yes. It's upsetting and scary and every once in a while I cry about it. My breasts are part of my womanhood. They are a part of me. But I try to focus on the positives:
I've always wanted smaller breasts - they are large and heavy and a literal pain in the neck (and back). I even talked to a doctor about breast reduction 20 years ago but never did it. So now I can downsize!
My breasts will look better than they ever have! In fact, I've heard I'll be able to go bra-less. Wow. Haven't done that since about age 12.
There are, of course, negatives, too (more on that later), but I'm trying to focus on the positives. And here's a little thank you to Angelina Jolie for making a lot more people aware of the decisions you have to make if you have a BRCA gene defect.
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