Galia: BRCA2 positive. How a home DNA test changed her life

Galia is the Production Manager for KLRU-TV, the PBS affiliate in Austin, Texas and home to the world-renowned Austin City Limits television show. Galia also produced Lone Star Emmy-nominated SXSW Flashback 2012 and 2013, interviewing, among others, the Deadliest Catch captains and Grumpy Cat. When she’s not at work, she enjoys Cardinals baseball, volunteering with animals, trying new Austin restaurants, and spending time with her family. 

Written by Galia 

I always knew that my strong family history of breast cancer left me with a higher than normal risk. My mom had breast cancer when she was only 40 years old (and was recently diagnosed with stage IV colon cancer as well). Her mom had breast cancer twice, and most of her sisters had breast cancer as well.

As a result of this, I have been getting mammograms and MRIs every six months since my late 20s. However, since I also have fibrocystic breasts, they would often find something questionable, making it extra stressful for me. I’d been told many times in the past that I should consider surgery if I ever decided to get genetic testing, but I told myself I never wanted to know.

Then this past year, a friend of mine ordered DNA testing, and she told me how interesting it had been to learn about her genetic makeup and traits. I decided to order a kit for my sister and I, just for fun. I had no idea that when I opened an email from them that arrived on the afternoon of Friday, April 5, 2013, that my whole world would change when I learned  that I amBRCA2 positive (just like my mom).

This means I have an almost 90% likelihood of getting breast cancer –along with a 54% likelihood of getting ovarian cancer, and a significantly higher risk of pancreatic,stomach, gallbladder, and bile duct cancer. I was up all night that first evening reading people’s blogs and researching my options. I quickly decided I would have a prophylactic bilateral mastectomy (PBM) and that I wanted to use my own tissue if possible,to avoid any possible issues with implants (not to mention their needing to be replaced every ~10 years).

I connected with some amazing women through BRCA positive/prophylactic mastectomy Facebook groups, and shortly thereafter I submitted my application to the Center for Restorative Breast Surgery in New Orleans. I also saw an oncologist and was retested for the mutation (since my insurance likely wouldn’t recognize “unofficial” testing, who license the test from Myriad, who was the patent holder until recently).

The next step was to send in photos in order for them to determine if I had enough fat to reconstruct my breasts. It was very surreal taking naked photos of myself in my bathroom mirror and emailing them to strangers, and I constantly imagined the surgeons sitting around a table critiquing every inch of my body. They determined that I had enough fat in my hips, and the whole process initially moved very quickly until my insurance decided to deny coverage.

After much arguing and waiting, they finally decided it was indeed medically necessary, and I was given an official surgery date of July 17 for phase 1. The deductibles/copays are still quite costly however, especially since the Center is out-of-network; not to mention the added expense of travel.

The surgery took 10 hours, and it has all been a lot to get used to. My entire chest is numb and I may never have feeling there again. However, I do have shooting pains on the inside of my chest, and my skin constantly feels prickly.  I am hopeful this may be nerve regeneration (although I’m also told it could be phantom pain from having had an amputation). One of the weirdest sensations is that whenever I take a drink, I feel cold on the inside of my chest.

My hips/upper buttocks area is currently concave where they removed the fat to reconstruct my breasts, and that area is still very sore as well. This will be taken care of at the phase 2 surgery. I am now a month out from phase 1 and I just scheduled my phase 2 (and hopefully last) surgery for November 20.

I’m slowly easing into going back to work now too – I’m the production coordinator at Austin PBS. I still haven’t figured out my plan for reducing my risk of ovarian cancer yet, especially sinceI’m single and have no children. This has been a crazy journey and I still don’t know how much of my surgery will actually be covered by insurance (I’ve started getting claims, and the preliminary lack of coverage scares the crap out of me).

After getting my pathology report back and seeing a lot of precancerous indicators, I know I did the right thing. I hope that my blog  (https://brcaingbad.wordpress.com/),along with this piece, might help educate people about the prevalence of hereditary breast and ovarian cancer and I can help other women who are just starting to go through something similar.

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