‘Between my breasts and my life,I chose life’

In May 2010,Nidhi chose to undergo a preventive bilateral mastectomy at a Delhi hospital to reduce her chances of getting breast cancer. Like Hollywood actor Angelina Jolie,who opted for the procedure and wrote about it in the New York Times this month,sparking off a wave of sympathy and criticism alike,Nidhi had lost her mother to the disease. Unlike Jolie,she chose to surgically remove her breasts without taking the confirmatory BRCA gene test. The BRCA test,carried out from a simple blood sample,checks for two genetic mutations BRCA1 and 2,which confirms a woman’s susceptibility to the disease. These genetic mutations,which may be passed on through generations of affected families,comprise about 2-5 per cent of the total breast cancer cases,according to estimates in Western countries.

When she meets us,Nidhi is dressed immaculately,in an airy top and trousers,fingernails polished to perfection,her eyes done up beautifully,her lips shining. But she is cautious,weighing every word she says,and reluctant to divulge details about her identity,from her profession to the years she spent in the US before she returned to India. “Not even my in-laws,or my cousins who may be at a risk of contracting the disease themselves,know about this decision. It was my choice,and no one but my immediate family is aware of it,” she says. Her husband,two children and brother,supported her. “I was incredibly lucky that they understood. No one else in my family knows I took this step.

I do not think it is necessary to advertise my decision,” she says.

The decision to forego the BRCA gene test,she says,was driven by financial constraints. “I was clear in my mind that I would only go through the mastectomy if I could afford the breast reconstruction surgery later. I realised that if I underwent the gene test,while I may be able to afford the breast removal surgery,reconstruction would be beyond my budget,” she says. The mastectomy and reconstruction cost her between Rs 5 lakh and Rs 6 lakh. The gene test would have added up to another Rs 2 lakh. No insurance companies would cover the gene test,they did not even cover the mastectomy.

Knowing her family history,she says,“ there was a 98 per cent” chance that she would test positive. It’s not a number that doctors quoted,but watching her mother,her aunts and a cousin succumb to the disease convinced her that she was at high risk. “I had seen the whole process,from the moment the first lump appears to the chemo-radiotherapy cycles to when it spreads. There was a high chance that I would get it too. So,the gene test would not be a great revelation,” she says.

Nidhi started on regular mammograms when she was 30,soon after her mother was diagnosed with breast cancer,and continued for two decades. “My mother’s cancer spread everywhere and it kept returning. I started taking preventive steps much before she passed away. It was not so much her death,but seeing her suffer that made me aware,” she says. “But somewhere,I was tired of it all,the mammograms,the visits to the cancer specialist and the endless self-examinations. I knew that I did not want to live in fear any longer.” It was not the fear of death,she says,but the fear of having to suffer and living through cancer and fighting the pain.

Senior consultant in plastic surgery at Fortis Hospital,Vasant Kunj,Dr Rashmi Taneja,who operated on Nidhi,agrees her decision was not easy to accept. “I took 2-3 sittings to try and understand her. I also tried to convince her to take the BRCA gene test before considering such an extreme step. But she was so confident,and so clear in her head.” The financial problems,she says,are faced by many patients. “Reconstruction after mastectomy is so important for most women,and it is unfortunate that it is seen as a wasteful expenditure in our country,particularly by insurance companies,” she says.

Nidhi began to consider mastectomy after her menopause,around five years ago. “My family was complete,I would not have any more children. After menopause and with age,the chances of getting the cancer were higher,” she says. She had a hysterectomy due to excess bleeding before menopause,and chose to have her ovaries removed too. “It was not a prophylactic (preventive) decision,but it did minimise my risks of contracting breast cancer. After that procedure,the idea of a mastectomy dawned on me,” she says.

She went to four different doctors,for over a year,before she came to Fortis. “Doctors were reluctant,and I was not comfortable with some surgeons. It was a hard job to try and make people understand my choice. It still is. I may still get cancer in another organ,but I am glad I did what I could to fight breast cancer,” she says.

What Angelina Jolie’s disclosure has done,doctors say,is start a debate about not just the procedure,but also the possibility of detecting cancer before it strikes. “We need to see what Jolie did before the surgery: she took a genetic test to detect cancer. It has raised awareness about the fact that the disease may have genetic basis,though in rare cases,” says Dr Rajiv Sarin,head of the Mumbai-based Tata Memorial Hospital’s genetic cancer department.

As queries about the BRCA gene test start pouring in,several doctors advise caution. Surgery,they say,is the last resort of cancer treatment. Dr Taneja is careful to point out that mastectomy may not be the best solution for all women. “Every case is different,and decisions have to be taken after considering financial and social constraints. Regular screenings for cancer may be just as useful in most cases,” she says. Prophylactic surgeries should be the last option,agrees Dr Sarin. “Genetic tests can,at best,confirm 70-80 percent chances of contracting cancer,and up to 90 per cent,in some exceptional cases. That still leaves a good 10-15 per cent chance of a person not getting the disease. So removing the organ should only be the last resort.”

A section of doctors say the need for the BRCA genetic test,particularly in Indian women,is much debated. Dr VP Singh,consultant in surgical oncology with Apollo Hospital in Delhi,says the genetic test has not gone through enough trials in India. “The trials have mostly been in the Caucasian population,and the percentage of genetic cases even there is very low. So,we should not unnecessarily panic (sic) women into first taking this step,and then considering the other drastic step (mastectomy).” The complications of a mastectomy are myriad,he warns — both psychological and social. “Several women who have cancer in one breast,opt to surgically remove the other breast as well,before the cancer can strike it. Then again,women undergo mastectomies after a diagnosis of cancer. All of them go through a lot of problems,and I would certainly not wish to advocate the procedure of an entirely preventive mastectomy,” Dr Singh says.

A 38-year-old breast cancer patient from Sir Ganga Ram hospital,for example,opted for a breast removal surgery after consultations with her family. “She and her husband decided that they could not afford the reconstructive procedure,and the mastectomy was done with this knowledge. But a few months later,she said her relationship started disintegrating,” recalls Dr Mahesh Mangal,chairperson of plastic surgery at Sir Ganga Ram Hospital. Soon after,the woman’s husband divorced her.

At the other end of the spectrum from Nidhi is a 31-year-old ebullient woman from Mumbai. A part of the production team in a Marathi television channel,she tested positive for the BRCA gene mutation when she was 24. The test was done for free at the Tata Memorial Hospital’s genetics department,where free genetic tests have been made possible since 2007 under a joint project with the Indian Council of Medical Research. The test result came two years after she had been diagnosed and treated for breast cancer. She had lost her mother and her maternal cousin to the disease earlier,and the knowledge that it could have a hereditary basis long after the treatment was complete,was “bewildering”. But despite knowing for nearly eight years that she has a genetic mutation that may make her susceptible to the disease again,she does not consider mastectomy an option. “I know the test result means the cancer can return any time. The tests and screenings seem to be a smarter way of managing the problem,” says the woman who married her long-time boyfriend after being diagnosed with breast cancer. “I want to fight the cancer and ensure I lead a normal life. If I become so obsessive about preventing the disease that it forces me to give up my life anyway,then what is the point of fighting it in the first place?” she asks.

Surgical reconstruction,doctors say,may return the semblance of the breast,but possibly never the precise structure of the organ again. “Breasts are such an integral part of a woman’s identity,even without all the considerations of family and society. Despite the best techniques in reconstruction,there will always be scarring,and there are problems like nipple loss. These can be traumatising for women,particularly since the process takes about 4-5 months,from when the breast tissue is first removed,to putting fillers like balloons,to eventually inserting surgical implants,” Dr Taneja says.

“I have no breasts,and I am still a gorgeous woman. Beat that,” Nidhi says,sipping her glass of coconut water carefully.

Today,she is a part-time counsellor,and full-time friend to several women diagnosed with cancer. She convinced a friend who had to undergo mastectomy to speak to her doctor about reconstruction. “It’s a wonder how so many doctors do not even suggest reconstruction as an option,particularly if you are on the wrong side of 40,” she says.

Her only regret,she says,is not getting back to exercise sooner. “There is so much muscle that is chopped off that without exercise,some muscles,like those in your arms,have restricted movement,” she says.

Would she advise her daughter to have the surgery? “I may suggest it,but certainly not before menopause,unless the risk determined in the gene test is very high. I don’t mean to tell every woman to take this step. It depends on your own idea of self and body image,and you have to take it knowing it is irreversible. Even for my children,the decision would have to be theirs,” she says.

Before the procedure,she reveals,she spent some time mulling over how her body would change. “I looked through a lot of pictures and videos on the Web,of women who had undergone the procedure. That helped me prepare.”

Has she truly gotten over the loss of her breasts? She hesitates,while framing a response to the query. “Initially,I did feel my body was different ,but I never looked at the mirror and cried,it just took some getting used to. I was rather heavy in the bust earlier,and then my size reduced suddenly after surgery,so I had to get my clothes altered. Even now,I have to be careful not to buy very low tops,lest the scars show,” she says.

She describes her decision as a deliberated choice. “Between my breasts and my life,I chose life. It was as simple as that,” she says.

In the bloodline

Genetic cancers comprise 2-5 per cent of total cancers,according to data from the West. “Of the one million new cancer cases occurring in India annually,50,000 patients may have familial cancers,which require specialised genetic counselling and treatment,” says Dr Rajeev Sarin of Tata Memorial Hospital.

Cancers from hereditary mutations strike at young ages—patients may be in their early 20s or 30s.

Such genetic mutations make patients prone to developing other cancers,at other sites,once the primary tumour is treated.

Paired organs like breasts,ovaries and kidneys are most likely to be affected by such cancers