Angelina Jolie did not start a trend in the United States; probably, she is the most prominent person to have asked for a double breast removal after doctors found an abnormal BRCA1 gene in her. Women in that country have done it before her.

In India, however, struggling to cope with spreading awareness of detecting cancer early, it is quite likely that the Hollywood star has actually brought the concept of preventive mastectomies into the consciousness of substantive members of the public.BRCA 1 and BRCA 2 testing itself is not common in the country, says Dr. V. Shanta, chairperson, Adyar Cancer Institute. Naturally, it follows that very, very few people actually demand protective breast removal on detection of the mutant gene.

“At the Institute, we provide the facility to test for these mutant genes for those who have a family history of, or have cancer themselves,” she explains. BRCA 1 testing could be part of a genetic counselling package for those who have a history of cancer in the family. “It is very rare, yes. But as a referral centre, we have seen some patients who demanded a mastectomy on discovery of the BRCA gene positivity.”

“Easily, testing for BRCA 1 and BRCA 2 is done neither widely nor systematically, in this country,” according to Selvi Radhakrishnan, consultant oncoplastic breast surgeon, Chennai Breast Centre. “In most cases we do not even have a reference mutation [the particular kind of mutation the patient’s mother has had, for instance] and that makes it tough to arrive at mutation itself,” she adds.

Apart from the Adyar Cancer Institute, Tata Memorial Hospital in Mumbai does a lot of work on the BRCA 1/2 play in breast cancer, says Dr. Selvi. “There are some private clinics offering the testing too, but I’m not sure how reliable these results are. Even if there are results that you can rely on, there are two issues that we must handle first: A negative BRCA test does not exclude the possibility of cancer in future; and, if there is a positive result, we must know what to do.”

The absence of any epidemiological data on BRCA positives means there is no data yet for the country, unlike in the U.S. and the U.K., where certain populations have been identified as “high risk.” Genetic testing is done rather routinely for them.

“If you are living in the U.S. or U.K., it is done routinely as part of the package and is covered under insurance,” says S. Ayyappan, surgical oncologist, Madras Cancer Care. In India, a single test costs upward of Rs. 50,000, and very few have any awareness of the possibility. “In fact, it is only of late that we have seen more early cancers, caught through a screening programme. Earlier, we used to see late stage cancers, and there was not much prevention we could do. This recent phenomenon itself is a huge advancement for India.”

The only protective bilateral breast removals Dr. Selvi has done involved patients who already had cancer in one breast, and they were pretty young. The other option to removing the breast, after an abnormal BRCA gene is found, is periodic counselling to pick up the disease early and treat it initially.

“In fact, state-of-the-art medical prudence stresses organ conservation. Pick up the tumour early, remove it surgically, and keep the breast,” explains Dr. Shanta. “This means leaving behind the maximum possible breast tissue without compromising on attacking the tumour. But we find that a lot of women prefer breast removal entirely, even if they have come early. There is the overwhelming fear that the tumour will come back, and the challenge of a prolonged treatment [with radiation following surgery] if they decide to keep the breast.”

A general mastectomy, even a double one, poses no risk to life itself, says Dr. Shanta, “unless there is any other complication.” A skilled surgeon could complete it in about 1.5 hours. Again, only a small per cent of the population which undergoes mastectomies prefers to go for breast reconstruction. The silicone implant Jolie has talked about turns out to be pretty expensive.

“Some go for an external prosthesis, while others don’t bother,” Dr. Selvi further explains. Unlike removal of the uterus, a mastectomy does not cause huge hormonal imbalances.

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