Do you need mastectomy?

Doctors,expressed worry that Jolie's disclosure could be misinterpreted by other women.

Written by New York Times | Published: May 18, 2013 3:43 am

Experts fear that Angelina Jolie’s disclosure of preventive mastectomies may be misinterpreted by women who don’t really need the surgery

One of the defining moments in the history of breast cancer occurred in 1974 when the first lady,Betty Ford,spoke openly about her mastectomy,lifting a veil of secrecy from the disease and ushering in a new era of breast cancer awareness.

Now four decades later,another leading lady — the actress Angelina Jolie — has focussed public attention on breast cancer again,but this time with an even bolder message: A woman at genetic risk should feel empowered to remove both breasts as a way to prevent the disease. Jolie revealed on Tuesday that because she carries a cancer-causing mutation,she has had a double mastectomy.

Some doctors,however,expressed worry that Jolie’s disclosure could be misinterpreted by other women,fuelling the trend toward mastectomies that are not medically necessary. In recent years,doctors have reported a virtual epidemic of preventive mastectomies among women who have cancer in one breast and decide to remove the healthy one as well,even though they do not have genetic mutations that increase their risk and their odds of a second breast cancer are very low.

Jolie wrote on the Op-Ed page of The New York Times that she had tested positive for a genetic mutation known as BRCA1,which left her with an exceedingly high risk (87 per cent) for developing breast and ovarian cancer. After genetic counselling,Jolie opted to have both breasts removed and to undergo reconstructive surgery.

Her condition is rare. Mutations in BRCA1 and another gene called BRCA2 are estimated to cause only 5 per cent to 10 per cent of breast cancers and 10 per cent to 15 per cent of ovarian cancers among white women in the United States. The mutations are found in other racial and ethnic groups as well,but it is not known how common they are.

About 30 per cent of women who are found to have BRCA mutations choose preventive mastectomies,said Dr Kenneth Offit,chief of clinical genetics at Memorial Sloan-Kettering Cancer Center in New York. Those who have seen family members die young from the disease are most likely to opt for the surgery.

“It’s important to make it clear that a BRCA mutation is a special,high-risk situation,” said Dr Monica Morrow,chief of the breast service at Sloan-Kettering. For women at very high risk,preventive mastectomy makes sense,but few women fall into that category,she said.

For women’s health advocates,the trend toward double mastectomies in women who do not have mutations is frustrating. Dr Morrow says she has often tried to talk patients out of it without success. Some imagine their risk of new or recurring cancer to be far higher than it really is. Others think that their breasts will match up better if both are removed and reconstructed.

Jolie’s decision highlights the painful dilemma facing women with BRCA mutations.

“She is a special case,and you can completely understand why she did it,” said Dr Susan Love,the author of a best-seller,“Dr Susan Love’s Breast Book,” and a breast surgeon. “But I hope people realise that we really don’t have good prevention for breast cancer. When you have to cut off normal body parts to prevent a disease,that’s really pretty barbaric when you think about it.”

Women who carry BRCA mutations have,on average,about a 65 per cent risk of eventually developing breast cancer,as opposed to a risk of about 12 per cent for most women. For some mutation carriers,the risk may be higher.

Because the BRCA mutations are rare and the test expensive — about $3,000 — it is not recommended for most women.

But for women with breast cancer who do have mutations,knowing their status can help them make further treatment decisions,like whether to have an unaffected breast or their ovaries removed.

Women who should consider testing are those who have breast cancer before 50 years,a family history of both breast and ovarian cancer,or many close relatives with breast cancer,especially if it developed before 50 years. Any woman with ovarian cancer should consider being tested,as should Ashkenazi Jewish women with breast or ovarian cancer. Men with breast cancer and their families should also ask about the possibility of a genetic predisposition to the disease.

Because the cancer risks for carriers are so high,women with the mutations are often advised to have their breasts and ovaries removed as a preventive measure. It is generally considered safe to wait long enough to have children before having the ovaries removed,but the operation should be done by age 40,said Dr Susan M Domchek,an expert on cancer genetics at the University of Pennsylvania and the executive director of its Basser Research Center,which specialises in BRCA mutations. There is no reliable way to screen for ovarian cancer,and most cases are detected at a relatively late stage,when the disease is harder to treat and more likely to be fatal.

Jolie said that she herself had a 50 per cent risk of ovarian cancer. “I started with the breasts,as my risk of breast cancer is higher than my risk of ovarian cancer,and the surgery is more complex,” she wrote.

Removing the breasts is not the only option,Dr Domchek said. Some women with BRCA mutations choose close monitoring with mammograms and M.R.I. scans once a year,staggered so that they have one scan or the other every six months. Those tests offer a chance to find cancer early.

For some women,certain drugs can lower the risk of breast cancer,but not as much as preventive mastectomy.

It is also possible for women who are mutation carriers to avoid passing the gene to their children,by undergoing in vitro fertilisation and having embryos screened for BRCA genes. Then,only embryos free of mutations can be implanted.

Jolie’s celebrity and her roles as a mother of six and a movie star who plays strong women,including the swashbuckling archaeologist Lara Croft,may give her decision far-reaching impact. Dr Isabelle Bedrosian,a surgical oncologist at M D Anderson Cancer Center in Houston,has been a vocal critic of the trend toward double mastectomy among women who are not at high genetic risk. However,she hopes the decision by Jolie will focus women on the value of genetic counseling and making informed decisions.

“I think there is an important upside to the story,and that is that women will hopefully be more curious about their family history,” Dr Bedrosian said. “We need to be careful that one message does not apply to all. Angelina’s situation is very unique. People should not be quick to say ‘I should do like she did,’ because you may not be like her.”

DENISE GRADY,TARA PARKER-POPE and PAM BELLUCK

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