Dual Mastectomy

Alisa Tomlinson knew her chemotherapy had been successful when her doctors told her the tumor in her breast had disappeared, but that didn't give her the peace of mind she craved.

So she had both breasts removed. The suspicious lump, the mammogram, the biopsy, the painful wait for an answer: "I didn't want to live that ever again," said the San Jose mother of two.

Tomlinson, now 41, had no family history of breast cancer, and her surgeon recommended only a conservative lumpectomy after her chemotherapy. Yet her drastic choice is becoming increasingly common among American women who are diagnosed with breast cancer.

In a new study published today in the online edition of the Journal of Clinical Oncology, researchers report that the rate of double mastectomy in women with single-breast cancer rose 150 percent in six years - even though the aggressive treatment doesn't necessarily improve survival rates.

The researchers used a national cancer treatment database to study the treatment decisions of more than 150,000 women who were diagnosed with cancer in a single breast between 1998 and 2003. White women, younger women and women whose cancer originated in their milk glands, increasing risk of occurence in the other breast, were more likely to choose a double mastectomy, the researchers found.

"It's a very vulnerable time for these patients. In a very short period of time they have to decide how to treat their breast cancer. Under the stress of the situation they will have both breasts removed because it seems logical at the time," said lead author Dr. Todd Tuttle, chief of surgical oncology at the University of Minnesota.

The actual number of women choosing double mastectomy remains relatively small: of all women undergoing mastectomies of any kind in the study, 4.2 percent chose double mastectomy in 1998, rising to 11 percent in 2003. Of the 152,755 women the researchers studied over six years, a total of 4,969 received a double mastectomy.

Yet the trend is troubling, Tuttle said. Most of the women will never develop cancer in the second breast. Cancer is more likely to spread to other parts of the body than it is to develop in the second breast. Women often make the irreversible decision too quickly, when they are under duress, he said.

"I often tell patients to wait, saying, 'let's treat the cancer we know about and deal with that,"' Tuttle said.

Although overall rates of breast cancer have declined in recent years, the disease still strikes tens of thousands of American women every year.

One in every eight women will develop invasive breast cancer at some time in their lives, according to the American Cancer Society. In 2004, the most recent year for which federal data are available, nearly 187,000 women in the United States were diagnosed with breast cancer and nearly 50,000 women died.

Typically discovered through mammography or direct breast examination, breast cancer is treated with medication, chemotherapy, radiation, and surgeries ranging from lumpectomy, in which only a part of the breast is removed, to mastectomy, in which the entire breast is removed and in many cases reconstructed with implants or tissue from other parts of the body.

Double mastectomy is considered a most aggressive form of treatment, yet patients like Tomlinson say it provides a sense of security that is worth nearly any price.

"I went in without a second's hesitation and I came out knowing I'd done the right thing," said Tomlinson, who works with autistic children as an educational aide. "Even now, I have no regrets."

Fear followed good news Tomlinson was diagnosed in August 2006 after feeling a lump in her breast. After five months of aggressive chemotherapy that caused great fatigue and the loss of her hair, Tomlinson got good news from her doctor: the lump was gone.

But as Tomlinson sat in a waiting room for a preliminary mammogram test before her lumpectomy, she realized that as long as both of her breasts were intact, she would live in fear. The next day, she cancelled the lumpectomy and asked her surgeon to schedule a double mastectomy instead.

"She challenged me on it pretty hard," Tomlinson recalled. "At the end, she said, 'I think you are doing this for the right reasons."'

"I know my chances of living any longer weren't any greater," Tomlinson said, "but I wanted to put this behind me as much as I could, to know that I have taken, in every fashion, the most aggressive approach."

Tomlinson, who said her husband supported her decision, had a type of mastectomy and reconstruction that is difficult to detect. However, she no longer has any sensation in her reconstructed breasts. "It's not fabulous, but if that's what I have to give up for my sanity, so be it."

Tomlinson's experience highlights many of the factors that researchers believe underlie their findings.

Because of improved screening, women are being diagnosed earlier and are more willing to take aggressive measures to improve their quality of life. Some patients decide a lifetime of potentially false alarms isn't worth keeping either breast, he said.

Women are more frequently tested for a gene mutation that can increase the risk that the cancer will spread to the other second breast. Finally, mastectomy and breast reconstruction techniques have improved dramatically in the past decade, researchers suggested.

Dr. Frederick Dirbas, a Stanford University cancer surgeon who specializes in breast cancer, said between 10 and 15 percent of his patients who want or need a mastectomy for single breast cancer choose double mastectomy.

Because doctors don't want to overtreat patients, some cancer surgeons have refused to perform some double mastectomies when there is no proof they will improve a patient's survival rate, and they have chastised physicians who do, Dirbas said.

Dirbas used to be in that camp, but his views changed when he saw the "palpable relief" of patients after their surgeries.

"They feel that the methods we have for screening have let them down once and will do so again," Dirbas said. "You'll often hear women talking about wanting to be there for their families."

He does, however, hope that the rise in double mastectomies is a temporary phenomenon.

"I'm sure if a simple pill would make the cancer go away, we wouldn't be seeing as many (preventive) mastectomies, but that's not the case."

In the meantime, he says, some women will continue to ask him for double mastectomies, and he provides them as long as they understand it won't likely improve their chances of survival.

"I really have very few patients who come back and say, 'I wish I had not done a mastectomy," Dirbas said. "I have had patients come back and say, 'I wish you'd done the other side."'