By Liz Szabo, USA TODAY
Lisa Bonchek Adams was only 37, with a new baby and two older children, when her doctor noticed something strange during a routine breast exam. Although her doctor didn’t feel a lump, one breast felt “different” from the other.
A few weeks later, Adams learned that she needed a mastectomy. Follow-up tests indicated there were cancer cells throughout Adams’ left breast, dispersed too widely to be removed with a lumpectomy.
That’s when Adams made a surprising decision. She asked her surgeon to remove both of her breasts, not just the one with cancer.
A small but growing number of young women are choosing this kind of aggressive surgery, called contralateral prophylactic mastectomy. Women such as Adams say the surgery allows them to retake control of a frightening disease. But the trend has alarmed some doctors, who say such surgeries are unlikely to help the average woman or improve her survival.
“I think women feel like, ‘I’m going to go through this once, and I don’t want to go through this worry again,’” says Adams, 42, of Darien, Conn. “I wanted to do everything I could to have as much time with my children.”
Across the country, the number of breast cancer patients choosing preventive removal of the unaffected breast grew by 10 times from 1998 to 2007, when about 5% of all patients opted for the procedure, says a study published last year in Annals of Surgical Oncology.
Among young women such as Adams, rates have risen even higher, tripling since 2000, says the University of Minnesota’s Elizabeth Habermann, co-author of a 2010 study in the Journal of Clinical Oncology. In 2006, the last year for which national data are available, more than 15% of breast cancer patients ages 18 to 39 had a healthy breast removed, she says.
Individual hospitals are seeing similar trends.
At New York’s Memorial Sloan-Kettering Cancer Center, the number of women having preventive mastectomies grew from 7% in 1997 to 24% in 2005, according to an April study in the Journal of Clinical Oncology. At the University of Minnesota, a study in 2006-07 found that 29% of breast cancer patients chose to have both breasts removed, although only one was affected.
Some doctors worry that young women are undergoing unnecessary surgery. The April study from Memorial Sloan-Kettering found that most women having preventive mastectomies weren’t at high risk for relapse.
But women can’t be blamed for choosing aggressive therapy, given that doctors can’t always predict who’s at the greatest risk of dying, says Fran Visco, president of the National Breast Cancer Coalition.
Lack of progress, options
“We really haven’t made enough progress to give these women enough options,” Visco says. “We can say, ‘You are probably going to be fine,’ but we can’t say, ‘You are definitely going to be fine.’ So this drastic intervention is all we have. And that’s pretty sad, after all these years and billions of dollars spent.”
Doctors say a number of factors are driving the trend:
• Fear of relapse. A study published in this month’s Annals of Surgical Oncology shows that women with breast cancer believe they have a 31% chance of developing a new tumor in the opposite breast. The actual risk is less than 7% after 10 years, even among women thought to be at greater risk, such as those under 45 at diagnosis.
• New technology. A growing number are getting MRIs, or magnetic resonance imaging, before surgery, says Patricia Ganz, a breast specialist at UCLA’s Jonsson Comprehensive Cancer Center. MRIs sometimes find minute cancers in the other breast that are too small to see on mammograms, Ganz says. A 2009 study in Annals of Surgical Oncology found that women who had preoperative MRIs were twice as likely as others to have a preventive mastectomy.
• Genetic testing. Many young women who get aggressive surgery have mutations in genes called BRCA-1 and BRCA-2 that sharply increase their risk, Ganz says. The mutations cause 5% to 10% of breast cancers. She says she has seen a growing number of women opt for preventive mastectomies since tests became widely available in the late 1990s. In 2008, actress Christina Applegate announced she had a double mastectomy, based partly on the fact that she carries the mutations.
Ganz says aggressive surgery may be appropriate in young gene carriers, who have a 60% lifetime risk of developing another breast cancer in the opposite breast. Some of these women also opt to remove their ovaries, a surgery that also reduces their risk of future cancers.
And while studies have sometimes produced conflicting results, there’s no clear evidence that removing the healthy breast actually improves survival, even for women with the mutations, says a 2010 article in Annals of Surgical Oncology by surgeon Katharine Yao.
That’s partly because of their low overall risk and because doctors monitor cancer survivors so closely, Ganz says. Overall, a woman’s chances of survival are based more on the aggressiveness of the first tumor than the appearance of second cancers, according to Yao’s study. Only 2.5% of breast cancer deaths are a result of tumors that develop in the opposite breast, her study says.
And mastectomy isn’t the only way to reduce the risk of future cancers. In her study, Yao notes that chemotherapy and hormonal therapies also can help women stay cancer-free.
Some doctors are concerned that women overestimate the benefits of mastectomies.
For example, actress Wanda Sykes announced last month that she now has “zero chance of having breast cancer” after a double mastectomy. Sykes had the surgery after doctors discovered tumor cells called DCIS, or ductal carcinoma in situ, which doctors view as either a very early breast cancer or a precancer, in her left breast.
Mastectomy reduces the risk of cancer by 90%, but tumors can still grow back in scar tissue or under the arm, Ganz says. Sykes has said she has a family history of breast cancer but has not publicly said whether she carries genetic mutations.
‘Enormous climate of fear’
Surgeon Susan Love, author of Dr. Susan Love’s Breast Book, says doctors need to make sure that women have all the facts and don’t fall prey to “wishful thinking” about aggressive treatment. “Women think, ‘If we offer up our breasts to the gods, we will get our lives back,’” says Love.
“There is an enormous climate of fear, whether that’s from Breast Cancer Awareness Month or the news media the other 11 months of the year,” says Monica Morrow, a breast cancer specialist at Memorial Sloan-Kettering. “The only thing you ever hear about breast cancer is about some woman who’s dying because she didn’t get treated in time.”
Otis Brawley, chief medical officer at the American Cancer Society, says his organization constantly struggles with the question “How can we accurately portray the concerns about breast cancer without overly alarming people?”
Adams says she carefully weighed her options. She dreaded the thought of going through decades of mammograms, biopsies and other tests. A double mastectomy also offered cosmetic advantages, she says, allowing her plastic surgeon to make her breasts symmetrical.
No regrets about her choice
“The decision to remove the breast that was seemingly cancer-free was an easy one for me,” Adams says. “That roller coaster of emotions each time is something I didn’t want to deal with. … I was treating my cancer aggressively so that I could put some of those emotions of fear and worry behind me.”
Follow-up tests further convinced Adams that she had made the right decision: Doctors learned that her cancer was larger than they had originally realized, and it had even spread to one of her lymph nodes. Doctors also found abnormal cells in her healthy breast.
Adams also had four months of chemotherapy. Then, at age 39, she had her ovaries removed, a surgery that reduces her body’s exposure to estrogen, which can fuel breast tumors.
Five years later, Adams says she feels comfortable with her choices. Her husband also has supported her decisions. With cancer taking away so much control, Adams says, aggressive treatment allows women “to take control over something that they can control.”