Women at risk opting for preventive mastectomies

When Laura Sago was 12, her mother was diagnosed with breast cancer at age 38.

When she was 45, her older sister Susan was told she had it, too. And precisely one year later, when her other older sister, Sandi, received her breast-cancer diagnosis, Laura Sago picked up the phone and called her doctor.

“I told him I wanted to have a preventive double mastectomy. He said he completely understood and referred me to a breast cancer surgeon right away.”

Several weeks ago, Sago, 48, of Scott, Pa. had both breasts removed, even though she has never received a cancer diagnosis — a move she calls “liberating.”

She's one of a growing number of women at risk for breast cancer who, according to a new state study, are opting for preventive surgery to keep the disease at bay.

Nationally, a study published in the Journal of Clinical Oncology in 2007 found that so-called bilateral mastectomies among women with cancer in only one breast more than doubled from 1998 to 2003, from 1.8 percent to 4.8 percent.

A study released by the Pennsylvania Health Care Cost Containment Council found that 455 women chose to have a preventive mastectomy in 2011, up from 94 in 2002.

Anecdotally, doctors have already been observing the trend.

Recently, for example, five of Dr. Gretchen Ahrendt's breast-cancer patients told her they wanted a double mastectomy, even though there were other options available.

“I would have never had that conversation 15 years ago,” said Ahrendt, co-director of the Comprehensive Breast Cancer Program at Magee-Womens Hospital of the University of Pittsburgh Medical Center.

She noted that she and her colleagues have observed an increasing rate of preventive mastectomies matching what the Pennsylvania study reported.

“What we don't know is why,” she said, “or whether it was appropriate.”

A couple of critical factors are at play, said Kathleen Erb, a breast-cancer surgeon at Allegheny General Hospital.

An increase in the availability of genetic testing can identify mutations of two different genes — BRCA1 and BRCA2 — that increase the chance a woman will get breast and ovarian cancer, and plastic reconstructive breast surgery has made significant strides.

“When my first sister had breast cancer and was going through all these treatments, I said, ‘I am going to think about having preventive surgery,' and she thought I was crazy,” Laura Sago said. “And as soon as my other sister called me with her diagnosis, I went ahead and called the doctor.”

Sago feels she made the right decision.

“I did not have a second thought at all,” she said.

For her, mammograms every January and MRIs every June were the norm. And in some ways, that increased testing may be associated with more mastectomies.

Highly sensitive magnetic resonance imaging will pick up a small tumor overlooked by a mammogram that may never become life threatening, some doctors said.

Breast cancer awareness advocates have publicly expressed concern in the past that some women are opting to cut off healthy breasts, given all the advances in treatment that are out there, from earlier detection, better systemic treatments and more minimal surgery.

“What is discordant is that the trend over the past several decades has been to do less. We have better screening, finding tumors when they are smaller, and if a tumor is a little larger than we'd like it to be, we can treat it before surgery,” Ahrendt said.

She said it's critical that women get the kind of education about what alternative treatments to surgery are out there.

But for many who have seen a loved one die of the disease or who has been called back for frequent biopsies when abnormalities were detected, sometimes drastic action is the only option.

“Women want to have some control over this risk factor,” Ahrendt said. “No one can see into the future. When we counsel a woman, we give her statistics and probabilities, but sometimes, for the woman sitting across from me, it's all or nothing.”