It was Friday 13, 1998, when Neerja Malik, then 44, a social worker and mother of 7-year-old twins, was diagnosed with cancer in her left breast. Shocked and numb, she remembers breaking the news to her father, a retired naval officer.

“Papa, I’m going to fight cancer,” she said.

Her father held her close and said, “Don’t fight it, my dear. Just face it.”

This is the resolute advice that Malik, now a consultant cancer counsellor at Apollo Specialty Hospitals, Chennai, gives all her patients: Act like victory is inevitable.

“We’re not cancer survivors. We’re cancer conquerors,” she says “Just face the challenge.”

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During the course of her own treatment for breast cancer in Mumbai, where her parents lived, Malik remembers how meeting a support group at the hospital excited her. However, when she expressed her desire to start a support group for cancer patients when she returned to Chennai, members of the Mumbai group told her it wouldn’t be wise.

“They said that life expectancy was uncertain,” she says. “I was asked to wait at least five years before I counselled anyone else. If I started a support group and then died, [they said] it could shatter my patients. It was a depressing situation and it upset me.”

However, in December of that year, her cousin asked if she could informally counsel a friend who had been diagnosed and was feeling very low. When Malik realized how much it helped, there was no looking back. In 2004, Malik launched the Apollo Cancer Support group and, in 11 years, has counselled patients from all over the world, helping them find the positive outlook, emotional strength, and spiritual support she feels is essential to cancer care. Even when cancer later struck her right breast, Malik never stopped counselling.

“Patients appreciate the fact that I’ve gone through the same pain, that I’ve been there and done that,” she explains.

Malik helps her patients understand what to expect from the treatment. They go into chemotherapy reassured it isn’t the villain it’s made out to be—that saline and anti-nausea pre- and post-medication aid recovery from the chemical cocktail. They anticipate that frequent radiation therapy, which is given in some cases to prevent the cancer from recurring, can make one feel like she’s roasting like a lobster—especially after the thirtieth session.

But this is help that many in India don’t receive, simply because of the lack of adequate support groups and the unwillingness to talk of the disease.

“During the course of my practice, I’ve found three major vulnerabilities with regard to breast cancer care,” says Dr. Sumeet Shah, a consultant surgical oncologist in Mumbai. “Accurate information on the disease is rarely available to patients. The second is the lack of patient support groups.  And the third—there is a lack of support for the poor, who cannot afford costs of treatment.”

To address these concerns, Dr. Shah started the first online support group for breast cancer patients two years ago. Breast Cancer India is now like one, big, online family, says Ujwala Raje, 42, a breast cancer survivor and one of the group’s founding members. Here, women undergoing treatment can find information, support, advice, and comfort.

“It helps immensely to talk about the issues you’re facing,” she says. “Hair loss can be less devastating to you if you know that someone grew a thick head of hair after being completely bald because of chemotherapy.”

BREAST CANCER IN INDIA

According to the Population Based Cancer Registry, breast cancer cases have almost doubled since 2009, especially in India’s urban areas such as Delhi, Mumbai, and Chennai, and now account for 25 to 31 percent of all cancers in women in Indian cities. This could be because of a sudden spike in awareness of the disease, says Dr. Uttam Soni, a consultant oncoplastic breast surgeon in Jaipur.  Regardless, cases are rising—and skewing to a younger generation, she says.

Earlier, breast cancer would be more prominent in older women, aged 50-70, but now it’s commonly seen in a younger demographic. Women aged 30-50 years are being increasingly diagnosed, which presents a troubling, though not insurmountable challenge for doctors: cancer tends to spread more rapidly and be more aggressive in younger patients.

Indian health care struggles to keep up; breast cancer cases often aren’t properly diagnosed and given treatment until the disease has advanced. For some women, the biggest stumbling block can be as simple as not knowing whom to consult first. Not all patients have access to a specialized breast treatment unit, which are few and far between. Most patients see a general physician or a gynecologist, who doesn’t always refer them to a specialist as a matter of course. This can further delay proper diagnosis and treatment, compounding risks and costs.

“A vast majority of Indian women do not get medical care early enough, the main reasons being illiteracy, cultural constraints, a sheer lack of awareness and financial issues,” says Dr. Selvi Radhakrishnan, consultant oncoplastic breast surgeon at the Chennai Breast Centre. “In the absence of a nationwide screening program, breast cancer is diagnosed at a very advanced stage in our country.”

In order to collect donations for those who cannot afford treatment and to subsidize breast cancer surgeries in Mumbai, Dr. Shah has organized an NGO called The Pink Initiative. The organization also works to educate patients and the public about the facts and fiction of the disease. As India wakes up to the problem of breast cancer, more efforts like Dr. Shah’s, Raje’s and Malik’s can be expected. But there’s no denying that cultural taboos continue to plague such progress.

BREAST AND CANCER: TWO TABOOS IN ONE

“When it was time for my daughter to marry, three grooms turned her down because I had just recovered from breast cancer,” says Usha*, 56, a retired nurse in Chennai. “She was healthy enough, but even the possibility of dealing with something like this in the future was not a risk that these men were prepared to take.”

In a culture where arranged marriages are the norm, a bride with a family history of breast cancer – or any hint of malignancy – can often be a pariah in the marriage circuit. Families are reluctant to talk about the disease, compounding fear and shame. But Usha’s daughter Anu*, 26, a banker, made a point of being open about her family history. Today, she is happily married with no regrets.

“I insisted on disclosing my family medical history fully before getting married and I’m glad that I did, even if it meant waiting for the right man,” she says. “I didn’t want to marry someone who would desert me in sickness, if ever that situation arose.”

Social stigma not only keeps women mum about the possibility of breast cancer—it also keeps them mum when they have it. For a disease in which life or death hinges on timely detection and effective treatment, regressive norms that discourage women from getting breast examinations can be deadly. Sheila*, 49, a housewife, was diagnosed with stage three breast cancer last year. Sheila admits that she had known something was wrong for at least six months before approaching her gynecologist.

“I was embarrassed to have my breasts examined by our male family doctor,” she says.

But what she dismissed as a painless lump turned out to be malignant. Sheila went through a long and painful course of chemotherapy and ultimately lost her breast. While she is grateful to be alive, of course, the cost of surgery and treatment, which escalates the later the disease is diagnosed, has been a burden.

*Names have been changed to protect privacy.

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This is the second part in our breast cancer series. The next and final installment will be a quick-and-dirty guide to the disease’s testing, terminology, and treatment.