Women with predisposition to cancer form sisterhood

WASHINGTON — The snippets of conversation float above this summer happy-hour crowd.

“Vinnie the nipple guy.”

“The mutants.”

“Angie.”

But the most powerful word in this group of women? “Yet.”

As in, they haven't had cancer yet.

They are “previvors” — survivors of a predisposition to cancer.

Like Angelina Jolie, these Washington area women found out through a blood test that they carry a BRCA gene mutation, which gave the 38-year-old actress and activist an 87 percent risk of developing breast cancer at some point in her life. The abnormal gene — in Jolie's case, BRCA1 — also increases her risk of getting ovarian cancer by 50 percent.

Now the celebrity's decision about what to do about that fact has made public the kinds of discussion these women used to hold in private.

When Jolie shared her medical history in May with a New York Times Op-Ed, including her decision to have her breasts removed and have reconstructive surgery, she said it was so “I can tell my children that they don't need to fear they will lose me to breast cancer.”

It also was a gift to the women in the previvor crowd.

“We have what Angie has,” they can now tell friends and loved ones — a tidy shorthand for entering a world of medical uncertainty and radical surgery. Jolie's revelation has also led to an increase in the number of women seeking testing, Washington geneticists say. She is now the poster woman, or unofficial spokeswoman, for a group of women whose ranks are growing.

Maia Magder, 38, a speech pathologist at National Institutes of Health, was three weeks post-op when Jolie's news broke. She had exactly what Angie had.

“As in, literally, since I (too) had a nipple-sparing prophylactic bilateral mastectomy,” Magder said, explaining her history to 10 other women in the Washington area who call themselves previvors.

They gather regularly for support groups, sometimes at hospital centers, other times at happy hours, like this one last month, where heart-wrenching discussions are made easier with generous pours of white wine.

“Try talking about this with people at the office, especially if you work with a lot of men,” said Marni Carroll, 38. The women around the long, sun-drenched table raise their glasses in agreement.

“Instead, we don't have to explain ourselves as much anymore,” says Carroll, who had a double mastectomy in 2011 and her ovaries removed in February.

“What I say is: 'I have the Angie gene,'” said Magder, whose mother died of breast cancer in 1996. Magder was 21.

Of course, for years, before Jolie's revelation, those with the gene mutation — discovered in 1990 — had their own sisterhood and subculture.

They call themselves “the mutants” because mutation carriers lack a tumor suppressor gene.

Other high-profile women such as actress Christina Applegate have spoken publicly about having both breasts removed because of the BRCA mutation. Closer to home, University of Maryland graduate and Miss District of Columbia 2012 Allyn Rose, 25, whose mother, grandmother and great-aunt died of breast of cancer, told reporters recently that although she does not have the gene mutation, she has a strong enough family history that she decided to have the surgery this summer.

In October, a feature-length Hollywood movie called “Decoding Annie Parker” will tell the true story of American geneticist Mary-Claire King (played by Helen Hunt), who is determined to a find a genetic link in breast cancer, a notion that was rejected by her peers in 1990.

Now, the link is well documented.

Daily calls to Georgetown Lombardi Comprehensive Cancer Center in Washington from women seeking genetic testing in the weeks after Jolie's op-ed went from five to 13, said Beth Peshkin, professor of oncology and the senior genetic counselor there.

Despite fears that Jolie's revelation would cause women who didn't really need testing to demand it, the inquiries were instead largely from “people with a family history who were putting off testing,” Peshkin said. (One in about 400 women in the general population carry mutations to BRCA1 or to a related gene, BRCA2, according to Otis Brawley, chief medical officer for the American Cancer Society.)

Meanwhile, a month after Jolie's announcement, the Supreme Court unanimously ruled that the patents by the company Myriad Genetics on the BRCA1 and BRCA2 genes were invalid, meaning “more women (and men) will have access to potentially lifesaving genetic information, because competition has lowered the cost of these genetic tests,” said Lisa Schlager, of Facing Our Risk of Cancer Empowered, a national nonprofit group for people affected by hereditary breast and ovarian cancer.

The previvor crowd gathers for a happy hour just after 6 p.m. with the June sun still bright. Rotating around the table, each woman shares her experience.

But at nearly 9 p.m., they haven't even made it halfway. It's hard to limit stories that summarize generations of cancer history and agonizing decisions regarding surgeries. And the introductions become a chance for the women to share the names of doctors and tips for how to handle things they hope most women never have to know about, like hot flashes at 32 after you have your ovaries removed.

To most of the women in this group, a double mastectomy doesn't seem radical or barbaric. Like Jolie, many here have watched their mothers or sisters, aunts or grandmothers suffer through years of chemotherapy and surgeries, only to ultimately die. They point out that Jolie's aunt, Debbie Martin, 61, died of breast cancer, just two weeks after Jolie's announcement.

Nicole Randall, 34, tells the women that she has vivid memories of her mother getting a “disfiguring mastectomy” in 1988. Randall was 8.

“Back then, you could see the staples in her chest. She had to wear a squishy prosthesis,” Randall said. She was an active mom who coached softball and swam with her.

“I will always remember how she would take out her prosthesis for the pool,” she said.

Just four years later, after helping her mother through her mastectomy, two rounds of chemotherapy and radiation that left her bald and with burns on her body, her mother Jeanne, died. Nicole was 12.

She doesn't like the term “previvor,” she tells the women. It's too glib for women who have been through the cancer war. Maybe they haven't lost their hair during chemo, but they have lost a mother, a sister, an aunt.

After genetic testing, Randall got a bilateral mastectomy in 2010, and she started a Twitter account called @losingmyboobs about her experience.

She was single when she removed her breasts. She called dating with a double mastectomy “terrifying.”

“But I can't think of anything more terrifying than repeating the past,” said Randall, who got married last year.

Nine months ago, she had a daughter. She named her Lyla, after Randall's grandmother, who raised her after her mother died.

It would be easier if her story ends there.

But, she shares with the group, she worries she might have passed down the gene mutation.

“I hope she won't be angry at me,” she says, in tears. “I hope she will know I wanted her so much.”

Cheryl Schmitz wants all the women at the event to hear about someone: “Vinnie, the nipple guy in Baltimore.”

She's referring to Vinnie Myers, a 3-D tattooing specialist who can turn reconstructed “Barbie boobs,” or implants that lack nipples, into ones that look authentic.

Myers, 50, started nipple tattooing around the end of 2001, when a physician in Baltimore asked him to fix a few attempts the doctor had botched.

Myers did such a realistic job — and, he said, “breast cancer circles are pretty tight” — that today he performs 25 to 30 nipple tattoos a week, a majority of which are on cancer survivors.

Business is good, but that can be troubling. “How busy do you want to be? I wish there wasn't so much breast cancer. I am booked up to November. At the same time, I know women feel it makes a tremendous difference.”

Sometimes, women cry during the process. So does Vinnie, whose sister received a diagnosis in 2010.

“I have to hold back,” he said. “They are relieved that they are at the last step of the whole thing.”

Schmitz, preaching the gospel of Vinnie to the women at the previvor happy hour. This group of women, like many breast cancer support groups, have such a common ground that they can skip certain aspects of the getting-to-know-you bit, even on their first meeting.

But that doesn't mean they agree on everything.

Brenda Ritzco, 41, is the only previvor here who has chosen close monitoring over what she calls a “pre-emptive strike” — a prophylactic surgery.

After she tested positive for the BRAC2 mutation, she “cried for weeks,” then went to six months of therapy and decided she wanted monitoring. Choosing monitoring over surgery is a heated issue in the larger breast cancer community.

The women said they supported Ritzco's choice, even if they looked at her nervously and said they wouldn't pick it themselves.

It's a sort of Rorschach test for personality: Can you live with uncertainty?

Or do you require as much control as possible?

Whichever path the women choose, they all hope for the same answer to the bigger question — whether cancer will make an appearance no matter what.

The answer they continue to hope for? Not yet.