Double mastectomy decision is personal choice for women with gene mutation

Some opt for surveillance over surgery

INDIANAPOLIS - Some local women who've made the tough decision to undergo preventive double mastectomies are calling Angelina Jolie brave for making her decision public.

Lori Adelson made the same decision Jolie made.

"My sister had cancer. She found out that she had the BRCA 2 gene and she said, 'Lori, you have to get tested,'" Adelson said. "So I got tested. I have the same gene."

Adelson said the likelihood that she would get breast cancer was between 65 percent and 90 percent.

"The thought of me getting cancer with young children was just more than I could bear, so it was actually an easy decision for me (to have the surgery)," she said.

Adelson said back then, in 1999, there was virtually no support. Now, she helps support and educate others who have a family history of cancer through the group FORCE -- which stands for Facing Our Risk of Cancer Empowered.

Stephanie Cohen, a genetic counselor at St. Vincent Cancer Care Center, said the test for the "cancer gene" can be done with a blood or saliva sample, and she recommends the test for women with a strong family history of breast cancer, starting at age 25.

"We think about 1 in 500 individuals in the general population carry a mutation in a BRCA 1 or 2," Cohen said.

Not every woman who has a BRCA mutation will get cancer, but getting a double mastectomy reduces the risk of getting breast cancer by 90 percent.

Many women who have the gene mutation choose close surveillance with mammograms and MRI's, but Adelson said she doesn't regret her decision to remove both her breasts and her ovaries pre-emptively.

"I have greatly reduced my risk. And, does it seem drastic? Yes," she said. "But, for me, after I did the surgery it was a huge relief."

Both survivors and experts stress it's a very personal choice that each woman has to make on her own.

For more information about FORCE, click here.

 

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