Should more Indian women be undergoing the kinds of gene tests that have prompted Hollywood star Angelina Jolie to remove both breasts, ovaries and fallopian tubes? Doctors say regular checks could do just as well, but the number of takers for the BRCA gene mutation tests is nonetheless rising. And, in some instances, the tests are being hailed as life-savers, as in the case of Pune-based schoolteacher Zia Chaney.
Chaney, 43, a mother of two, found two lumps in her right breast during a self-examination in 2010. An ultrasound test, mammogram and vacuum-assisted biopsy confirmed that the tumours were malignant. Dr Chaiyanand Koppiker, breast cancer specialist at Hinduja Hospital, advised her to undergo a single mastectomy as soon as possible, followed by breast reconstruction surgery. She consulted two other doctors, who recommended the same treatment.
After a surgery and four sessions of low-dose chemotherapy, Chaney was declared cancer-free. Then, in 2013, during her annual vacation in the US, she visited the Rush University Medical Center in Chicago and was advised to undergo a gene test. The test showed a mutation in the BRCA 2 gene, indicating a 70% chance of her other breast too being affected by cancer, and a 60% chance of developing ovarian cancer.
Back home, Dr Koppiker recommended removal of the breast, ovaries and fallopian tubes. By the end of 2013, Zia had undergone the two surgical procedures - and slashed her chances of developing cancer.
"I feel healthier than ever," she says. "And I'm taking better care of myself. I now swim, run and cycle with a group of fitness buddies. Cancer should not be a stigma. It should be treated like any other ailment."
Oncologists, however, say very few women in India undergo genetic tests for cancer, though they are widely available in the cities. "Even patients with a family history of breast or ovarian cancer avoid genetic testing, often out of fear of the stigma," says Dr BK Smruti, consultant oncologist at Lilavati Hospital and Bombay Hospital.
Some doctors recommend regular checks instead. "Whether to do the test or not is more of a personal decision," says Dr SK Shrivastav, head of the radio-oncology department at Tata Memorial Hospital. "Preemptive surgery is a radical measure; it is often enough to catch it early on."
In Jolie's case her blood tests indicated early signs of cancer and this sparked her decision to remove her fallopian tubes and ovaries. The Lara Croft actress had a preventive double mastectomy in 2013 because she has a family history of breast and ovarian cancer. Jolie's mother Marcheline Bertrand died of ovarian cancer, while her maternal grandmother and an aunt died of breast cancer.
Indian women are prone to cancer, especially breast cancer. And while this form of the disease is among the most treatable cancers, many Indian women are diagnosed in the later stages because they ignore tell-tell signs such as excessive menstrual bleeding.
While an average woman has a 12% risk of developing breast cancer sometime during her life, many experts still believe that preventive surgeries are an extreme step. Jolie carries the BRCA1 mutation, which bumps the lifetime risk for breast cancer to about five times higher.
In the general population, the lifetime risk for ovarian cancer is 1%. For women with the BRCA 1 or BRCA 2 mutation, the lifetime risk of ovarian cancer can be as high as 60%.
Has the 'Angelina effect' encouraged more women to undergo screening for the BRCA 1 and BRCA 2 gene mutations? The answer is both yes and no: The 'Angelina effect' did raise awareness about the options at hand to determine your risk for cancers, but cancer specialists do not recommend random screenings and radical surgeries.Also watch: Angelina Jolie has ovaries removed, writes children will never say "mom died of ovarian cancer
"We have to use the test to fight the disease and not to spread panic," says Dr Harit Chaturvedi, chairman of Max Oncology at Max Healthcare. "Gene testing is helpful when it is done in the right spirit. We have to first understand whether getting this test will really benefit the person or not, and even if the test is positive one may not need to undergo surgery immediately."
There is a high likelihood, however, that fear could prompt recipients of negative news to opt for unnecessary surgeries.
In the US, almost 12% of women under 40 get their second breast removed as well if one breast develops cancer.
"This is not always required, as data proves that of the 12%, only 2% would really have required a double mastectomy. These tests are a step in the right direction in terms of helping people make an informed choice," says Dr Chaturvedi.
Dr Ratna Puri, senior consultant and vice-chairperson at the Centre of Medical Genetics, Ganga Ram Hospital, says people have started consulting her on tests without referrals. "Self-awareness has increased after the Jolie news," she adds.
However, Puri warns against thinking of gene tests as just another over-the-counter check up.
"It's not like getting a simple blood test done as the implications here are so much more vast. Correct guidance is needed to know whether one actually needs the test and also what to make of the test results," she says.
Women who have been identified as being at extremely high risk of developing cancer, have undergone the screening and even had surgery as a result, vouch for its benefits. "It is totally worth the mental peace that you experience," says Ruchika Malhotra, 35, a Dubai-based freelance interior designer who underwent a double mastectomy and a complete hysterectomy last year.
Malhotra's case was recommended for screening and preventive surgeries because of her family history. "On my father's side an uncle and an aunt had breast cancer and another aunt had a brain tumour. My maternal grandparents had cancer and my father was also diagnosed with bladder cancer," says Malhotra, who developed cancer in her left breast in January 2014.
"Since one breast was being removed, I was clear I wanted my second breast removed too, as a precautionary measure. My doctor advised me to undergo genetic testing to know the actual risks. Although I wasn't BRCA 1 and BRCA 2 positive, I didn't want to take any risks."
Taking the decision was not easy, Malhotra admits. She says she had numerous discussions with family and friends before deciding to get screened and operated upon. The test cost her ` 1 lakh. "I have had people telling me that I should have gotten my pancreas removed as well. But I know I did what was right for me. My husband has been absolutely supportive of my decision," says the mother of two.