Big rise found in preventive mastectomies

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

When Ms. Sago 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, Ms. 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."

Two weeks ago, Ms. Sago, 48, of Scott, 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.

In the study, released Tuesday by the Pennsylvania Health Care Cost Containment Council, 455 women chose to have a preventive mastectomy in 2011, up from 94 in 2002. The study doesn't break down how many diagnosed with cancer in one breast decided to have the healthy breast removed, versus those women with no actual cancer diagnosis who had double mastectomies because of family history or a genetic marker.

Until now, there's been no study statewide showing how many women were getting preventive surgery, said officials at the council, an independent state agency.

Nationally, a study published in the Journal of Clinical Oncology in 2007 did find 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.

Pennsylvania's study also confirms what many local doctors have observed anecdotally. On Tuesday, for example, five of 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 Dr. Ahrendt, co-director of the Comprehensive Breast Cancer Program at Magee-Womens Hospital of UPMC.

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."

While there's no one reason for the uptick, a couple of critical factors are at play, said Kathleen Erb, a breast cancer surgeon at Allegheny General Hospital.

Those include an increase in the availability of genetic testing that can identify mutations of two different genes -- BRCA1 and BRCA2 -- that increase the chance a woman will get breast and ovarian cancer.

Plus, plastic reconstructive breast surgery has made significant strides since Ms. Sago's mother, Irene Klehm, also of Scott, was diagnosed at age 38.

"Her recovery was atrocious, extremely painful," recalled Ms. Sago. "I remember the pain she went through, although we didn't make a big deal about her losing a breast. That part didn't matter."

Ms. Sago's mother had a recurrence in her 40s, but is still alive today, she added.

Then her sister, Susan Calabrese, also of Scott, was diagnosed three years ago at the age of 48, and she opted for a mastectomy and chemotherapy, and exactly one year later, Ms. Sago's other sister, Sandi Todd, 53, of Atlanta was diagnosed with a different kind of breast cancer.

"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," Ms. Sago said. "And as soon as my other sister called me with her diagnosis, I went ahead and called the doctor."

There are some other surprising figures in the Pennsylvania study, too: breast cancer surgery rates in the state's hospitals remained fairly constant over the past decade, even as the number of women who had both a mastectomy and a lumpectomy in the same year dropped significantly.

Moreover, the number of hospitalizations declined by 1,400, mostly because fewer women were hospitalized multiple times in the same year for lumpectomies.

"There are far fewer instances of a woman having both a mastectomy and a lumpectomy in the same year and fewer instances of multiple lumpectomies in the same year," said Joe Martin, the council's director. "This improvement in efficacy and efficiency of treatment is sparing women the physical, mental and emotional toll of multiple surgical treatments."

Ms. Sago, however, feels she made the right decision.

"I did not have a second thought at all," she said. " I was not scared. I was not nervous. While I was waiting for the surgeon to get there, I thought, I can't believe I am not one bit nervous. And afterwards, it brought a great sense of relief."

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.

But since many women might perceive their cancer risk to be higher than it actually is, they will opt for surgery.

That is discouraging for Dr. Erb, who trained at Pittsburgh's pioneering National Surgical Adjuvant Breast and Bowel Project -- whose founder, Bernard Fisher, was the first to discover that lumpectomies with radiation were as effective as more disfiguring mastectomies.

"It is a little bit of a letdown, but we all have a different psychological reaction to it," she said, noting also that recent celebrities, including actress Christina Applegate, may have fueled the trend.

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," said Dr. Ahrendt.

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," said Dr. Ahrendt. "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."

state - health

Mackenzie Carpenter: mcarpenter@post-gazette.com or 412-263-1949.


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