North Shore 'Previvors' Applaud Angelina Jolie's Double Mastectomy

Heather Fineman has lost a lot at the hands of a disease that she's never actually been diagnosed with. 

Her great grandmother died of ovarian cancer when she was 54, and her grandmother died of ovarian cancer when she was 44.

When Fineman, a Highland Park resident, lost her 60-year-old mother to advanced ovarian cancer, she worried she might be at risk as well. She sought out genetic testing and learned she had a rare genetic mutation that gave her a 50 percent risk of getting ovarian cancer and an 87 percent risk of getting breast cancer.

So, before Fineman turned 37, she did what an increasing number of women are doing: she got a preventative hysterectomy and a double mastectomy.

"I am a 'previvor,'" Fineman said. 

Last week, Hollywood actress Angelina Jolie made headlines by announcing that she, too, had a preventative double mastectomy to reduce her risk of breast cancer.  Jolie also has the BRCA1 gene mutation, which means she also faced a nearly 90 percent chance of developing breast cancer. 

Fineman, who is a lead volunteer coordinator for Facing Our Risk of Cancer Empowered (FORCE), a nonprofit support group for people facing a heightened risk of cancer, explained that Jolie has shed light on a personal, complex topic. She hopes Jolie's decision to make this news public will make more women comfortable to talk about their family's medical history and make informed decisions about their health.

"Angelina Jolie has given an enormous gift to our community by sharing her story," Fineman said. "She has opened the door for discussion among everybody else and that's huge."

The importance of show and tell

Even with a high risk of cancer, the decision to get a mastectomy is a complicated one. Women weigh the very real risk of cancer against an equally powerful fear of diminished femininity, according to Fineman.

"The reason this is such a frightening decision for so many women is because so many women… fear that by removing their breasts, even if they have reconstruction, they are somehow diminishing themselves as a woman."

That's why a group like FORCE is so important, Fineman explained. Members meet quarterly in the Chicago area and discuss reconstruction options. They compare notes about surgeons they're considering and reconstruction options. At meetings, women who have already had mastectomies will show their reconstructed breasts to women who are still weighing whether or not to go through with the surgery. Fineman calls this part of the group get-togethers "Show and Tell."

"The show and tell is so important because the fear of the unknown is so great when you are contemplating the surgery that to be able to see a woman on the other side is huge," Fineman said. "It really makes such a positive impact when you start to psychologically process what you are going to look like after the surgery."

When she was trying to decide where to get her operations done and what kind of reconstruction to get, Fineman was frustrated that most of the information available to her came from doctors. She wanted to hear from other women who had been through this themselves. When Fineman found FORCE's website, she realized there was a lot she didn't know about mastectomies and reconstruction. Her mother never had reconstruction, which had a profound effect on Fineman's impression of a post-mastectomy woman.

"I was petrified of reconstruction until I had the opportunity to see other women's reconstruction," Fineman said. "That is what made the difference for me."

No regrets about surgeries

Fineman isn't the only North Shore resident who's benefitted from FORCE. Tracy Snyder, a Northbrook mother of twin girls, found out she had the genetic mutation that put her at a higher risk for breast and ovarian cancer when she was 26. Her mom had been diagnosed with breast cancer two years earlier. Her grandma had been diagnosed with ovarian cancer the same year. They both died two years later.

That's when Snyder decided to get genetic testing.

At 28, she got a double mastectomy.

"Before I even got the result, I'd just gotten married," Snyder said. "My husband and I made the decision together that I would proceed with double mastectomy."

Snyder met Fineman in 2009. She called their bond, and the bond they share with other FORCE members, a sisterhood.

"We have this connection," she said. "We rely on the support of each other a lot."

Snyder waited to get a hysterectomy because she wanted to have children. Her twins were born and then, at 34, she had the procedure done. She said that waiting eight years between finding out she had the mutation and getting her hysterectomy was stressful.

"In my mind, I could get ovarian cancer in this process," Snyder explained.

Snyder is relieved to be done with her surgeries, and is even more relieved to know she is far less likely now to face a cancer diagnosis.

"I have absolutely no regrets about my surgeries," Snyder said," none at all."

Genetic testing

The term "previvor" is slowly becoming more widespread as more women, like Fineman, Snyder and Jolie, take advantage of genetic testing.

"Women are getting tested younger," said Scott Weissman, a licensed genetic counselor at the Center for Medical Genetics at NorthShore University HealthSystem. "Younger women are being more proactive."

The genetic mutation that put Fineman, Snyder and Jolie at heightened risk of cancer is prevalent in the Ashkenazi Jewish community, according to Weissman. Whereas one in 500 people carry the mutation ordinarily, that number is one in 40 among Ashkenazi Jews, or Jews of Eastern European descent.

"Historical events like the diaspora and the Holocaust, where you had huge numbers of Jews being killed and small populations repopulating… makes the mutations more common," Weissman explained.

What happens after testing positive for the genetic mutation, however, is where things get murky. Is a mastectomy the most logical solution? What about regular screenings? What other variables should play a role in the decision?

"The paths are not completely clear," Fineman said. 

After meeting with doctors, surgeons, genetic counselors and other women facing similar circumstances, Fineman decided that she'd prefer to live without her breasts than with the constant need to get screened for cancer. Like Snyder, she has no regrets.

"I have been liberated by having this surgery," she said. 

She hopes that Jolie's decision to come forward with her mastectomies will make other women less apprehensive about choosing a similar course.

"If a woman as beautiful as Angelina Jolie can make this hard decision and have breast reconstruction surgery, then other women will feel a higher degree of comfort," Fineman said. "If she had it and she'll remain beautiful and feminine then they will as well."