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As cancer infiltrated her extended family, Jennifer Barilar took action.

“My cousin was diagnosed with breast cancer when she was 40. My grandmother passed away from pancreatic cancer. My cousin’s father dealt with colon cancer,” she said. “The whole family got together and decided to do some testing. My father tested positive for the BRCA gene, and I later found out that I have the BRCA-2 gene.”

Her reasons for concern didn’t stop there.

“There are different statistics out there, but I read that those with BRCA-2 have a 60-80 percent chance of developing breast cancer vs. someone who doesn’t have the gene mutation,” she said. “Plus, my mom’s sister, mother and aunt all had breast cancer and the BRCA gene doesn’t run on their side of the family.”

Not liking her odds, Barilar elected to have a bilateral mastectomy — both of her breasts were removed in an effort to avoid developing breast cancer in the future.

“After the surgery, there is only a slight chance of developing something later on — like 1-3 percent,” she said. “Geisinger didn’t recommend this course of action to me — they are phenomenal about helping the patient make a decision for him or herself. They gave me both scenarios and I decided to go with the mastectomy. For me, it was a no-brainer.”

 

BRCA options

The BRCA gene is a genetic mutation that is connected with significantly higher odds of developing certain cancers, including breast and ovarian, according to Geisinger’s Dr. Rosemary Leeming.

“When we find someone with the BRCA gene, there are two approaches. One is to do extra testing and screenings so we can pick up any potential cancer sooner,” she said. “Or you can proactively look to reduce the risk through certain medications or surgeries. There is no certain way that is best — each patient needs to decide what is best for herself.”

The discussion starts with an open and honest evaluation of where things stand and what things may come to the surface over time.

“We sat Jennifer — and other women in her shoes — down and said that while there was no cancer evident at that time, there were definitely risks and then shared the various options,” Leeming said. “There are national guidelines set for all various mutations, and we use those along with the patient’s personal situation to determine possible outcomes and how an enhanced screening process would look like vs. odds with the surgery and other scenarios.”

Proactive mastectomies in scenarios like this are increasing throughout the Valley, according to Dr. Christian Kauffman, a Geisinger doctor specializing in breast reconstruction after a mastectomy.

“Jennifer did surveillance before deciding on a mastectomy with reconstruction — we’ve noticed an increase in younger women who are electing to do this, and many of them look at reconstruction as a way to maintain as normal of a lifestyle afterward,” he said. “As more women become aware of genetic predispositions and get more information, they are making these healthcare decisions on their own.”

Using medication in place of mastectomy is an option for some women, although that does’t drop the odds of getting breast cancer as low as a bilateral mastectomy.

“There are several different medications we can use, but generally, these drugs cut risk by only about a half,” said Leeming. “For Jennifer, we estimated a 42 percent chance of getting breast cancer early on. If she took the meds for five years, the lifetime risk would have been about 21 percent, which is much better, but still fairly high compared to average women. On the other hand, a preventative mastectomy cuts risk by 95 percent.”

 

Setting expectations

Avoiding the mastectomy was not an option for Barilar, considering the alternative lifestyle.

“I would have been looking at screenings every six months, and each time wondering if that was going to be the test they’d find something. I wanted to take control of my life and do it on my terms,” she said. “It is a terrible surgery, but I decided I’d rather go through it as a healthy person that could better deal with recovery than wait until I was sick and older and deal with it then.”

She spoke to people who had breast cancer and a subsequent mastectomy to get an idea of what to expect.

“Everyone I spoke with had cancer, so on top of surgery, they were dealing with chemo. I just had the surgery to deal with, and the procedure and recovery were exactly what I assumed it would be,” she said. “Recovery included two weeks of being uncomfortable and four weeks of nuisance for me. However, what little pain I went through was worth it in the end.”

Barilar credits her strong support system, including her husband, family and friends, for helping her get through the process.

“The first two weeks weren’t a lot of fun. There was definitely some pain involved, and I learned to not overdo it and to keep up with the medication,” she said.

Moving forward, Barilar will need to go every couple of years for a mammogram, just to be safe that whatever remaining breast tissue doesn’t develop cancer.

As for other women who are unsure about whether they have the BRCA gene or don’t feel like keeping up with mammograms on a regular basis, Barilar urges action.

“Just be proactive about your own health. Talk with your doctor, make decisions with the help of your friends and family, and put yourself in the best place to thrive.”

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