Updated: January 29, 2017 11:51:38 am
In October last year, 33-year-old Dimple Bawa walked down the corridor of the outpatient department of Fortis Hospital, Gurgaon. She stopped mid-way and walked back towards her doctor’s room. She had a query for Dr Vinod Raina, who has over 23 years of experience as a medical oncologist and has been a principal investigator in at least 50 research projects at the All India Institute of Medical Sciences (AIIMS), Delhi. “Can I get a tattoo?” she asked. Taken by surprise, Dr Raina said, “What does this have to do with the test? If you feel like getting a tattoo, go ahead. But more importantly, let’s get the test done from another lab — to be sure about the results.”
A day before, Bawa had received a call from Dr Raina’s assistant. “Is it BRCA?” asked Dimple. “I don’t know. But I will fix an appointment for tomorrow,” the assistant said. Bawa sent a text message to Dr Raina:
“I guess it’s bad.”
He replied: “I can’t discuss this over the phone. But it will be good if you come with your husband tomorrow.”
Bawa did not wait for the next day. She called up Strand Life Sciences, a laboratory in Bengaluru, where her blood sample had been sent for genomic testing for cancer. “I am the one whose blood was tested. Please send me the findings right now.” In the next hour, the report was emailed to Bawa. It read: tested positive for BRCA 1.
“I was fine. I had overcome my fear of cancer,” says Bawa.
BRCA 1 and BRCA 2 were some of the first breast cancer genes to be identified in the 1990s. BRCA 1 normally acts to restrain the growth of cells in the breast. But when mutated, the gene predisposes one to breast cancer as well as ovarian cancer. The cancer gene became a part of the international medical conversation in May 2013 after Angelina Jolie wrote in the New York Times about her experience of inheriting a faulty BRCA 1 gene and how, armed with that information, she decided to have a preventive double mastectomy.
“Today it is possible to find out through a blood test whether you are highly susceptible to breast cancer and ovarian cancer,” Jolie wrote in the NYT. Later, the Harvard Medical School came out with some startling numbers: testing rates had increased by 64 per cent in the three weeks after the publication of Jolie’s essay. Her influence on people’s medical decision to opt for a BRCA test was termed the “Jolie effect”.
Jolie wrote about her mother fighting cancer for almost a decade. She wrote about how the doctors had estimated, on the basis of the test, that she had a 87 per cent risk of breast cancer and 50 per cent risk of ovarian cancer. “Once I knew that this was my reality, I decided to be proactive and to minimise the risk as much I could. I made a decision to have preventive double mastectomy… I am writing about it now because I hope that other women can benefit from my experience,” Jolie wrote.
Approximately 1.5 lakh Indians are diagnosed with breast cancer every year. The Indian cancer registry maintains no data about what proportion of the cancer cases are genetic. In the US, BRCA mutations account for 5-10 per cent of breast cancers and 10 to 15 per cent of ovarian cancers each year.
Just a month before Jolie opened up about her difficult choices, Bawa was diagnosed with breast cancer. She was 31. The cancer was in an advanced stage; it had occupied more than half of the left breast. Also, her cancer was Triple Negative, a variant with a tendency to spread fast to other distant organs, which does not respond to hormonal tablets and was most likely inherited.
Bawa was 12 when her mother was diagnosed with cancer. Having lost her father in a road accident, when she was five, Bawa’s mother, an entrepreneur, meant the world to her. “I lost my father at a very early age. But I don’t remember anything about the tragedy. My mother was everything to me. She ensured that I had the best childhood. I was a very happy child,” says Bawa, who is now 34.
Less than a year later, her mother underwent mastectomy in September 2004, followed by chemotherapy and radiation. Just two years later, the cancer had spread to the lungs, liver and brain. In 2007, her mother passed away. She was 55.
In May 2013, having nearly fought back the cancer through six rounds of chemotherapy, followed by mastectomy and radiation, Bawa was asked by her doctors if she wanted to know if her cancer was genetically induced by taking the BRCA test. “It was a clear no. I was not mentally prepared. I didn’t want to live my life in fear. The fear of getting cancer again. I had already accepted that I had Stage 3 breast cancer and that I would fight it. I didn’t want to focus on the future,” Bawa says.
Three years later, she had changed her mind. It was a decision that came at the end of a long journey, which took her out of misery and helplessness to taking ownership of her battle and her body.
It began on September 19, 2013. After a painful mastectomy of her left breast, one of her surgeons had held her hand and said, “As doctors, we only know about the treatment and the side-effects. But I cannot relate to your pain.”
As she was being wheeled back to the ward, she smiled at her husband. “But that brief conversation with my doctor was running in my head. I told myself that the doctors could not relate to me. My family cannot relate to me. [Thinking back] I could only relate to what my mother had gone through. [And now] only my co-patients could relate to me,” she says.
Cancer had alienated her from her near and dear ones, but it led her to seek out others like her. For the next three years, Bawa moved from fear to resilience. “I started meeting patients of all age groups. I started counselling them and I learned a lot from the survivors. A five-year-old child, a nine-year-old child, a 63-year-old man, a 65-year-old woman and a 31-year-old woman, who contacted me through Facebook,” says Bawa. “My relationship with cancer has been very complex…If there is one lesson that I have learnt from this journey is that if you have to fight cancer, prevention is everything,” she says.
Looking back, Bawa says it was an accident that brought home the possibility that all was not well with her. “If I had not gone shopping that day to GK Market, if a pile of clothes had not hit my left breast, I don’t think I would have known. It had hurt a little,” Bawa recollects.
The next day, Bawa and her family travelled to Shimla for a three-day break. “The pain persisted and I didn’t tell my husband. Once I returned, I went for a check-up at a hospital in south Delhi. The senior nurse referred me to a senior surgeon. He told me that as a precaution, I had to undergo the FNAC test,” Bawa says.
Google told Bawa quickly enough what FNAC (Fine Needle Aspiration Cytology) test was. “It is a diagnostic procedure used to investigate lumps or masses, widely used in the diagnosis of cancer and inflammatory conditions. My mind was blank. It could either be an inflammation or cancer,” Bawa says.
It was Holi the next day. “I was not excited. I was hyperactive and aggressive. I didn’t know how to handle the situation. My husband, by then, had found the prescription inside a bag. He tried to calm me down. But that didn’t work,”says Bawa.
Over the next few days, as she waited for the doctor’s verdict, Bawa tried several things to distract herself, from a brunch at the India Habitat Centre to shopping with her daughter. When she arrived at the doctor’s the next day, her husband was standing outside. “As I walked towards him, I saw him break down. He just couldn’t look into my eyes. And that was it,” she says. Bawa was referred to an oncologist at Max Hospital, Saket.
She remembers sitting silently in a chair, red-eyed and tearful. “Everything around me was a blur,” she says. She had many questions in her mind: “How curable is cancer? How long will the treatment take? Would I survive?”
She was then introduced to her doctor. “It was a very unpleasant meeting. We hardly spoke. All he did was write the tests. There was no conversation. There were no answers to my questions. I just cried. I felt helpless,” Bawa says.
As she hurtled from one laboratory to another to carry out the tests, far away from India, an oncologist from Cleveland, Ohio wrote to her: “Always remember that you have to follow a doctor and not the hospital,” the doctor told Bawa. “I wanted some reassurance. My cousin in the USA had sent my reports to an oncologist. He told me not to worry. And to follow one doctor. That was my first lesson in fighting cancer,” she says.
“It was April 13. My first chemotherapy session. I wanted to feel happy. So I went to Big Chill,” she recalls. She ordered a smoked chicken salad, her favourite at the Khan Market cafe. Accompanying her was her brother-in-law. “We decided not to think about anything and enjoy the food. It was really tough,” says Maninder Singh.
A slow drip was administered through an intravenous needle. The first of the six sessions had begun. “It was a really bad experience. I started dehydrating. My lips started peeling. I had a severe facial bone pain,” Bawa says. The second session was worse. “Without informing me, my dosage was increased. It was terrible. I had an argument with my doctor. I told him that I have to be mentally prepared for a higher dose,” she says.
That session drastically altered her approach towards cancer. The liver function test results, conducted to assess how she had taken the chemotherapy, were out. “On each of the parameters, I was on the higher side. This was a wake-up call. Because of my cancer, I was damaging my other organs. I had to protect my body. I decided that day that I would change my eating and sleeping habits. I started researching about holistic therapy. This was the second lesson from my cancer treatment,” Bawa says.
“For the first time in my life, I drank beetroot juice. I had more than 50 questions for my doctors — from how to protect my nails to details on nutrition. They told me to switch off the internet. But I told them this approach was working,” she says.
Milk thistle, a flowering herb to detox the liver, green apple juice used at the Israel government cancer institute, and salads became a part of her new diet. “My doctors started observing the change. And by the end of six sessions, I had responded to the treatment. The tests showed that the disease had gone by 90 per cent,” says Bawa.
After the chemotherapy, the doctors asked her for advice. “They said I should share and talk about the lifestyle changes I had made in my life with other patients,” Bawa says, with a sense of pride.
Still, in August that year, Bawa was asked by doctors to undergo a mastectomy — she was a high-risk cancer patient and she was young; the disease could recur. That was the most difficult part. “I had reservations about losing my femininity. I wanted to save my breast,” she says.
On September 15, the mastectomy process began. “Before undergoing anaesthetic clearance, I wore my black Promod dress. I told my husband that I wanted to look beautiful before I lose my breast,” she says. The surgery left her in turmoil. “I would stand in front of the mirror and cry. I could not accept the fact that I had lost my breast,” she says. A reconstruction surgery was also far away as the doctors advised radiation and observation for a few years before they could embark on that course.
A month later, she was shaken out of her despondency. “I was in a hospital to try out a prosthetic bra. I was waiting outside the trial room. I saw a 22-year-old girl, crying in pain as she tried to wear an artificial foot. That day I told myself I have not lost anything. Instead, I have saved my life,” Bawa says.
By the end of December, Bawa had completed her treatment. She had won the battle against cancer. She went on to start the Cheers to Life foundation, an NGO that works for cancer patients. Bawa organised seminars for cancer patients and survivors. “My focus had now shifted to breast cancer awareness. I started attending conferences. I started organising a few,” she says.
Her husband Rupinder Singh, an entrepreneur, says he is worried about her involvement with cancer awareness. “She is doing a noble thing. But it involves a lot of physical activity. She is shuffling between hospitals or organising seminars. I’m not very sure if so much activity is good for her health,” he says.
It was at one such seminar that Dr Raina spoke about the BRCA test. “He spoke about survivors who have had a relapse and underwent BRCA. He told me that I should undergo the test. I gave it a thought,” Bawa says. Her research connected her to many people, some of whom she met on social networks. If the test turned out positive, she might have to undergo preventive mastectomy on her right breast — and eventually, also remove her ovaries. Preventive prophylactic mastectomy cuts down the risk of breast cancer reoccurence by 85-90 per cent.
The BRCA test can give three results – positive, negative and unknown. “There is what we call the variation of unknown significance (VUS), which is most important. VUS is the unknown factor, which means that the pathogenicity of the variant can neither be confirmed nor ruled out. This has to be told to the person taking the test because it means that the result can be positive later. Local laboratories in Delhi do not divulge these details,” says Dr Mandeep Singh Malhotra, who specialises in post mastectomy reconstruction and breast oncoplasty and who will carry out Bawa’s mastectomy. It was to ensure complete reliability of Bawa’s first test that the result was rechecked by Myriads Genetics, USA.
Not everyone who tests BRCA positive must proceed to mastectomy. A person has the option to be kept under “intensive screening” — which implies regular MRIs, ultrasounds and mammograms.
As it turned out, the BRCA test suggested that Bawa has an 80 per cent risk of breast cancer reoccurrence and 40 per cent risk of getting ovarian cancer. “It’s also about her daughter. There is a 50 per cent chance that it can pass on to her daughter. According to US guidelines, when her daughter attains adulthood, this needs to be divulged to her. This is a very important aspect of genetic testing,” says Malhotra.
Bawa’s 15-year-old daughter has watched her mother’s struggle with cancer from close quarters. “I have divulged all the details about my mastectomy to my daughter. She knows what it means emotionally and physically. But about BRCA, she knows only bits and pieces. Slowly, when she turns 18, she will understand the importance of cancer prevention,” she says.
Doctors say the BRCA test is rarely done in India. “Dimple understood the complexities of BRCA because she had fought cancer and understood the importance of prevention. If at 28, she had done the same test, we could have caught the cancer at a very early stage. In a country where there is so much stigma attached to cancer, a test like BRCA is like opening a Pandora’s box,” says Dr Malhotra, who does at least two mastectomy reconstructions in a week. “There are other genes also, but in BRCA, we know how to intervene. In case of the ovarian cancer, Dimple will be kept in an intensive follow-up and her ovaries removed when she approaches menopause,” the doctor says.
When she finally agreed to the surgery, Bawa had one request: “My breasts have to be proportional. I cannot compromise on that”. All her husband wanted to know was how long it would take her to heal. “I told him to relax. I will be fine,” she says.
Bawa is now getting ready for surgery in multiple phases. In the first phase, she will undergo a reconstruction of the left breast, earlier affected by cancer. “After it heals, the right breast would be removed. The skin would be retained, the duct and breast fat removed. After that, an implant would be inserted,” says Dr Malhotra.
Last Monday, the reconstruction of her left breast started. In the next three months, Bawa will complete the preventive surgery and the reconstruction of the right breast. “Dimple says cancer chose the wrong girl. But I think it chose just the right girl, who is an inspiration to everyone,” says Suruchi Jain, Bawa’s close friend.
For Bawa, another important step is complete: a tattoo on the right wrist. A blue angel, with a pink cancer ribbon bow. From the bow, wings emerge and birds fly out. “The feathers are my experiences from the encounter with cancer. And my wings are growing. And the birds are flying. I wanted the tattoo to be soft and yet powerful and expressive. That is me,” she says.
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