MANHATTAN — After testing positive for BRCA 1 and BRCA 2, the gene mutations associated with increased risk of breast and ovarian cancers, Ruth Pagan elected to have both her breasts removed in February.
She had not yet been diagnosed with any cancer, but the restaurant manager who lives in Chelsea said she preferred to undergo a prophylactic double mastectomy than risk the likelihood of falling ill. She plans to get her ovaries removed for the same reason.
"I feel like I have a new lease on life," said Pagan, who said doctors told her after the surgery that if she waited another year, she would probably have been diagnosed with Stage 1 cancer.
In the wake of actress Angelina Jolie's similar surgery, which put the BRCA gene mutations in the spotlight, New York doctors have seen an uptick in women looking to test for it.
They've also seen women who want to take aggressive action to fight breast cancer with radical surgery — sometimes when it may not be warranted.
"With all of this awareness — pink ribbons and walkathons — it's created a culture of fear. It's the difference between making the decision out of fear or strength," said Dr. Sheldon Feldman, chief of breast surgery at New York-Presbyterian Hospital/Columbia University Medical Center.
"I think the awareness is good but it’s a double edge because it can lead to overtreatment."
Feldman said that a decade ago, roughly 80 percent of his patients who discovered that they had breast cancer preferred to focus on conserving their breasts — having lumpectomies to remove cancerous tumors, followed by radiation.
But wIthin the last five years, he said, that's grown to a 50/50 split between lumpectomies and mastectomies.
"If a woman has cancer in one breast … I almost never bring [a mastectomy] up unless she has the BRCA mutation," Feldman said. "But the patient almost always brings it up."
Surgical techniques for mastectomies and breast reconstruction have improved along with technology for early detection, Feldman said.
With the use of MRIs, for instance, a woman with a lump might find a second instance of cancerous or pre-cancerous cells that doctors wouldn't have spotted in the past.
"Pre-MRI, we wouldn't have known," Feldman explained. The woman would have had a lumpectomy, radiation and hormone blocking and her risk of recurrence would have likely have been in the single digits, he said.
Women with a BRCA mutation have an 80 to 90 percent risk of developing breast cancer by age 70. Because of that, many consider prophylactic surgery, which will reduce that risk by 95 to 98 percent, according to Memorial Sloan Kettering Cancer Center breast surgeon Lisa Sclafani.
Women with these mutations are also at high risk of developing ovarian cancer and should consider removing their ovaries, Sclafani said.
But, she added that the consequences of aggressive treatment, such as removing breasts and ovaries, can trigger the symptoms of menopause regardless of what age they take place.
"Few women want to go through menopause at age 35," she said, even when the upside of prophylactic ovary removal can cut the risk of breast cancer in half.
BRCA 1 is more dangerous than BRCA 2, said Feldman.
"There's no known target to treat. The prognosis is worse," he said, echoing that the decision to have prophylatic surgery depends on a complex array of factors including the type of mutation as well as the age and life situation of when a woman learns of her mutation.
In the wake of Jolie's announcement, Feldman said he's also noticed some women, who already knew they had BRCA gene, electing to move forward with surgery.
"I've had patients I've seen for 10 years who are finally like 'Let's do this,'" Feldman said.
Pagan was inspired by Jolie's actions to post a plea on Facebook advising other women with strong family histories of breast cancer to get tested. Since then, three of her friends have sought genetic counseling, and one of these tested positive for BRCA 1.
"Before Angelina talked about it, no one knew what it was," said Pagan, 45. "Having a star talking about it is important."
Pagan's grandmother and aunt died of breast cancer. One of her sisters was diagnosed with it at the age of 28 and died at the age of 33 in 2004. The day of her sister's funeral, another aunt found out she had breast cancer.
Pagan's other sister removed her breasts five years ago after testing positive for both genes to reduce her risks of getting breast cancer. But Pagan put off getting tested, first because she didn't have health insurance, and later because she was terrified by what she might found out.
"I kept missing my appointment because I was so scared. I was in denial," said Pagan, who finally got tested in 2010 after a genetic counselor at Columbia University Medical Center continued following up.
"I got tested and I was devastated," said Pagan, who waited for a year before getting surgery. "I postponed the surgery four times because I was so scared."