Bryna: BRCA 2 positive. A lifetime of tough decisions at only 36 years old

Bryna Siegel Finer teaches writing at Indiana University of Pennsylvania.  She is BRCA2 positive and is an active member of the Pittsburgh FORCE group.  She lives in Pittsburgh with her husband and their son, and blogs at bloggingbrca.wordpress.com. She is one of the youngest women we have telling her story. 

Written by Bryna Siegel Finer

In 2005, I learned that I am BRCA2 positive, which means that I have “the breast cancer gene.” This wasn’t a huge shock. Pretty much every person on my father’s side of the family has died from cancer, survived one or more rounds with cancer, or has taken prophylactic measures to prevent cancer.   Since learning of the gene mutation, I have spent seven years religiously going for mammograms, MRIs, and ultrasounds to check for breast and ovarian cancer.

In May 2012, my husband and I moved with our infant son from rural New England to Pittsburgh, my hometown; we wanted our son to grow up closer to family. Another reason for this move was that I wanted to live somewhere with excellent medical care so that I could be finished dealing with BRCA once and for all.  But, moving was a busy time with a new job, new home, and getting our son adjusted to school.  So I decided to spend some time thinking about my options for prophylactic surgeries.

Because ovarian cancer is much harder to detect, I wanted to have my ovaries removed as soon as possible.  I had planned to have a hysterectomy with oophorectomy in May 2013, when I would have the summer to recover and adjust to surgical menopause.  I would then have the mastectomy when my son was a little older and more self-sufficient, since I knew the recovery would be physically difficult.

Those plans were nixed, however, at my December 2012 mammogram; the radiologist saw two areas of micro-calcification in my right breast. Calcification is common, but because of its non-circular shape and asymmetry (it was only in one breast, not both), he considered it suspicious. Calcifications are also not really tumors; they are signs of pre-cancerous activity.

I had a stereotactic biopsy; not the most fun experience of my life.  A few days later, I learned that the cells were DCIS – pre-cancerous cells often referred to as Stage 0 breast cancer. Rather than fear or sadness, I found myself incredibly angry – how could I have sat on this BRCA information for SEVEN YEARS?!?!  I felt like I was being punished for not being pro-active (here I’d thought all the scanning was enough).

Because of my BRCA status, my timeline changed a lot.  My breast surgeon wanted me to have a mastectomy as soon as possible.  So, I scheduled a bilateral mastectomy with DIEP flap reconstruction for two weeks later.  The recovery wasn’t easy; the hardest part was that I wasn’t allowed to pick up my son for ten weeks.  But, it was worth it to know that my chances of recurrence or a new breast cancer are practically nil.

I didn’t need any cancer treatment, for which I was most thankful.  I then waited for my summer break, July 2013, to have a laparoscopic hysterectomy with salpingo-oophorectomy (removal of uterus, cervix, fallopian tubes, and ovaries).  The physical recovery was a lot easier for this, and again it was completely worth any pain to know that I won’t get ovarian cancer either.

So here I am -- I’m 36 years old, I have nippleless breasts, a gruesome hip-to-hip scar across my abdomen, and no reproductive organs or hormones.  I have felt the effects of surgical menopause – lashing out at my husband and other family members, sobbing uncontrollably for hours at a time, crying out loud, “Why did I do this to myself?  I’m ruined forever!”

I now wear an estrogen patch, just like a woman would in her 50s when going through natural menopause, and thankfully it’s working well.  Next week I go to the geriatric center at a local hospital for a bone density test – yes, I said “the geriatric center.”  These facts might sound depressing, and I confess that they are.

I am sad about a lot of what’s happened to my body.  Or maybe I should say that I’m sad about what I chose to do to my body.  But I couldn’t be happier that I knew about my BRCA status.  Had I not, I wouldn’t have been having mammograms at my age.  By age 40, the recommended age for beginning mammograms, the pre-cancerous cells in my breast could have been invasive tumors.  Breast cancer could have killed me before my son finished kindergarten.

If there’s another positive part of this experience, it’s the people I’ve ‘met’ virtually.  Through FORCE message boards, Hystersister discussion threads, and Facebook groups, I’ve talked to so many people about their experiences and shared my own.  There’s a whole community of us out there, and we all have this one tiny, life-changing cell in common.  It’s comforting to know that there are other women out there (besides Angelina Jolie) who’ve been faced with these decisions and dealt with the results.  And in many ways, it’s brought my family closer, too.

If I can use a cliché to end this piece, I have to say that knowledge is power.  Now that the Supreme Court has made it easier to get tested for the BRCA gene, there is no reason not to get it done!  And even though now I know I’m a mutant, I wouldn’t have it any other way.  That knowledge has saved the lives of many of my family members.  It saved my life, and it can save yours too.

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