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Young and BRCA positive: Now what?


 

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My mother was 36 when she was diagnosed with a very aggressive breast cancer. It metastasized a year later at age 37. My mother chose to stay alive as long as humanly possible, opting for every possible surgery and treatment. We watched her suffer and her quality of life deteriorate for 13 years, before she died at age 50.

My father was diagnosed with cancer at age 66. He refused most treatment understanding it would only prolong his suffering and passed away a year later at age 67.

When I was 16, I saw a genetic counselor with my mother and since then have stayed up to date on the latest recommendations for people at high risk. The recommendation until I was tested for a BRCA mutation was to treat myself like I was positive. So at age 25 it was recommended I start annual MRIs and mammograms.

Shira Sternberg

Shira Sternberg

When I turned 30, with my second parent dying of cancer, I decided I wanted to be tested for BRCA1/BRCA2. I tested positive.

I am sure I will have to reevaluate things if and when I have children, but currently I believe the annual tests do nothing but increase my risks.

At 25, after my first MRI, the doctor said they couldn’t make something out because my breasts were so dense and they needed me to come back in. I didn’t. I was living in Iowa, didn’t trust my doctor, was working 7 days a week, and honestly couldn’t be bothered. I stayed away from breast doctors for 5 years after that.

The second abnormal result came at 30, after I tested positive for BRCA2. I allowed a needle biopsy as follow-up. It came back normal.

After the third abnormal result 1 year later at age 31, I said to myself, “this is going to happen every single time I have an MRI because my breasts are dense and big.”

I touch my breasts more than once a day and am very in tune with how they are feeling.

If I have a slow tumor growing, I am confident I will find/feel it before it has taken over my body. It will be removed and I will be fine.

If I have an aggressive tumor, I will also find it before it has taken over my body, but because of its aggressiveness, it will ultimately kill me. I know a test may find it sooner and may increase my chances of living with cancer longer. However, if I don’t have kids, I would rather die than go through anything close to what my mother went through.

My breasts are high risk so before I have children I am willing to do whatever it takes to keep them as healthy as possible. To me, this includes walking away from doctors telling me I need annual MRIs and mammograms. I have had three MRIs and all three have come back abnormal.

I told the doctors as nicely as humanly possible, to find someone else’s high risk breasts to prick because my future children deserved to be born with a mother that has done everything possible to keep her breasts healthy.

From what I know, breasts are incredibly sensitive, and we need to keep our breast environment as safe and quiet as possible. Annual needles going into them doesn’t do that. I am fully aware that I may wake up tomorrow and feel a tumor that is “big and dangerous.” But, I am hopeful that won’t happen and confident with my own thought process and decisions.

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