By Diane Erwin
Leslie Jacobs knew without a doubt that if she tested positive for the breast cancer gene, she would choose to get a double mastectomy.
Her mother was diagnosed with breast cancer at 34. Her grandmother had it in her 50s. Her great-grandmother, in her 80s.
Jacobs didn’t want to be next. So when genetic testing determined that she had a mutation of the BRCA1 gene, “it was a no-brainer,” she said.
She was 24 when her breasts were removed during a double mastectomy just over a year ago, in September 2012.
“I’ve never once looked back from this decision,” said Jacobs, a corporate event planner in Cincinnati who grew up in Oakwood. “I was very confident in it.”
High-profile actresses like Angelina Jolie and Christina Applegate, who have shared their experiences with genetic testing and mastectomies, have brought an increased awareness to the option, said Dr. Thomas Heck, a breast surgeon and co-medical director of Samaritan Breast Center at Good Samaritan North Health Center in Dayton.
More women are being tested, he said, and more women who test positive are opting for surgery.
“The fear of developing breast cancer is taken away from them,” Heck said.
Jacobs had the procedure – a preventative nipple-sparing bilateral double mastectomy with immediate reconstructive surgery – months before Jolie announced in May that she too has had a preventative mastectomy.
Like Jolie, Jacobs tested positive for the BRCA1 gene. Women who test positive for either BRCA1 or BRCA2 have an 85 percent chance of getting breast cancer during their lifetime, said Faith Callif-Daley, a certified genetics counselor at Dayton Children’s Medical Center. That risk is cut by 90 to 95 percent if they have a preventative mastectomy.
Women who test positive do have other options, such as increased screenings, she said. And even with the surgery, the risk of getting breast cancer is never reduced to zero.
“But to be able to really take control of that and reduce the risk that significantly – that’s very powerful,” she said.
Women who are considering a preventative mastectomy should take several things into consideration. Those who have the nipple-sparing surgery will feel a decreased sensitivity of the nipple, Heck said, and a small percentage may still need to have their nipple and areola removed if the blood supply isn’t enough to keep them healthy. Women who have the surgery also won’t be able to breastfeed any future children.
But the positives of the surgery are significant. In addition to the decreased risk of developing breast cancer, Heck said immediate reconstruction results are excellent.
Jacobs has her natural nipples, but all of her breast tissue was removed and replaced with silicone implants. Still, she said she has only two small scars on the side of her breasts.
“Having one preventative surgery is nothing compared to what cancer is,” she said, noting that she never had to undergo chemotherapy or radiation.
Women who have a strong family history of breast or ovarian cancer should consider the genetic testing, Heck said. A woman’s risk of having breast cancer also increases if she has a male relative who has had breast cancer.
Preventative mastectomies are also sometimes being chosen by another group of women, Heck said: Those who already have been diagnosed with cancer in one breast. Some women opt to have a double mastectomy even if they test negative for the breast cancer gene simply for their own peace of mind, he said.
The genetic testing itself is easy. Callif-Daley said a saliva or blood specimen is sent to a lab, and results are available in a few weeks.
If a patient is told she has tested positive, Callif-Daley said she should remember that she has time to figure out how she wants to respond. That is true no matter what age she gets the results.
Meet with doctors and surgeons, she said. And remember that a preventative mastectomy is a permanent decision.
Jacobs realizes that many women are afraid to get mammograms and would rather not know if they test positive for a breast cancer gene. But she feels lucky that the genetic marker was found.
“I like to say I saved my life,” she said.
While she said she can’t say that a preventative mastectomy is the right choice for every woman, she has never second-guessed her own decision. Although Jacobs did not have cancer, she said it felt like she did because her odds were so high.
“I didn’t feel as though I had a choice,” she said about the surgery.
Jacobs said she would tell others who test positive for the gene not to dwell on the fact that they “didn’t hit the genetic lottery.” But how each woman responds to the news is a very personal decision.
Talk to medical professionals, get educated and be proactive, she said. A preventative mastectomy isn’t for everyone, and alternatives exist.
“Don’t let it dictate your life,” Jacobs said. “You still have to live your life.”