The secrecy and shame around women’s cancers
10 min read 21 Sep 2018, 11:04 AM ISTSeptember is ovarian cancer awareness month. How will this disease and other women's cancers get better support and awareness?
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Mumbai: After coming out of a debulking surgery and starting chemotherapy for low-grade serous ovarian cancer a year ago, I began my search for ovarian cancer support groups. Just after a cancer diagnosis, the non-cancer population can seem inadequate to help, sometimes in our second life haze, even shallow. What a newly diagnosed cancer patient needs, besides the best personalized medical treatment is the assurance that she’s not the only one who has what the world interprets as a death sentence. The gap between the right medical treatment and healing is wide, often insurmountable. How do we come to terms to the diagnosis itself, and learn to move on with life knowing cancer can come back, but that the awareness need not stop us from living meaningfully?
I connected with women across the world through online support groups, and friends of friends who have had cancer. I whatsapped actor Manisha Koirala, the cause celebre of ovarian cancer in India, who has been cancer-free for more than five years. She had undergone the same surgery as I did. “You may never get your old body back. Understand what your new body likes, be gentle with it," she once told me. Golden words.
The only Indian support group for ovarian cancer I found was Teal Warriors, based in Delhi. (I still don’t know any other Indian women who have had my variety of ovarian cancer—low grade serous, which is around 10% of all ovarian cancers worldwide.)
It was September—ovarian cancer awareness month. The group’s members were busy organizing events. Sunita B. Kapur, then 51, and four years into treatment for high-grade ovarian cancer, was a key member of the group. We talked a lot over the next year, while she continued to intermittently write a blog and attend weddings in her big, extended Punjabi family, carrying off the heavily-embellished-ghagras-and-no-hair look with aplomb. She has often told me, “A lot of the writing and talking about cancer are around survivors who have left the disease behind. There are other kinds of survivors, those who are living with the disease, but getting treatment and going on with life." Kapur makes living with cancer seem unheroic. Teal Warriors has been a big part of her ‘new normal’ life. She has been open about her illness on social media, her blogs and to everyone she and her husband know.
Teal Warriors was started by an equally inspiring ovarian cancer survivor, Ritu Bedi. Bedi was diagnosed in her 40s while she was on a work trip overseas. Till then, her doctor in Delhi ignored persistent symptoms such as bloating, indigestion as Irritable Bowel Syndrome or IBS. She underwent a debulking surgery and agonizing rounds of intra-peritoneal chemotherapy. Bedi has just completed her fifth year of being cancer-free—a milestone, because when diagnosed she was told that only two out of five women make it to five years. “Cancer has been a great teacher, it has taught me about the essence and cycle of life and the power of giving."
A social taboo
Gender-related cancers have an overwhelming sense of shame and taboo attached to them. Speculations about the causes of Sonali Bendre’s cancer, despite her openness about her diagnosis, in various online sites have bordered on the bizarre—one of them being, “she wears tight clothes".
Often the biggest hurdle in treatment of cancer is the perception more than the disease. Dr Amita Maheshwari, head of Gynaecological Oncology, Tata Memorial Hospital, Mumbai, the largest and most comprehensive destination for cancer treatment in India, says, “Many cancer patients and their families from Mumbai don’t come to our hospital because everybody knows Tata Hospital here. The hospital itself is a taboo."
With women’s cancers, the sense of shame is more because it is related to reproductive health, and in case of breast cancer, accepted standards of feminine beauty. If the mother has it, the marital prospects for her daughter are considered poor. Most women I have spoken to for this story, who have or have had breast or gynaecological cancer, said they have never got the opportunity to be part of a support group, and they choose not to talk about their experiences openly. “I went to the hospital, took my chemo, took the train and went back home," said a 40-year-old Marathi mother of two who had triple negative breast cancer, a virulent variety that is difficult to treat.
I spoke to a 40-year-old mother of two from Mumbai who lost her mother to breast cancer in the early 1990s, tested positive for BRCA when she was in her early 30s and decided to have a prophylactic double mastectomy when she was 34. The widely publicized decision of Hollywood actress Angelina Jolie to surgically remove both her breasts and ovaries because she had a strong family history and a positive BRCA gene mutation, have inspired a handful of women like this Mumbai woman worldwide. She belongs to the Konkonastha Brahmin community from the Western Coast; latest genome research shows a strong link between this community and the BRCA1 and 2 gene mutation.
“The most important part of this decision is counselling. It was a difficult surgery, there are psychological and physical implications. I lost all sensation in my breasts, but it was still worthwhile to have the choice. My husband and family supported by choice completely, which made it easy to go through," she says. Her risk of having breast cancer has gone down by 98% and ovarian cancer by 50%.
Dimple Bawa, who started the Cheers for Life Foundation in Delhi to spread awareness about and support patients of breast cancer after going through breast cancer herself and testing positive for BRCA2, says, “When I started Cheers to Life, patients and caregivers alike didn’t want to talk about this disease, or others know that they are battling it. With constant counselling and awareness programmes, I could see subtle changes in the behaviour of women who came to us."
Dr Rajan Datar, managing director of Nasik-based Datar Genetics, a genome testing facility for all kinds of cancers, says, “We discontinued hereditary gene screenings for gynaecological cancers two years ago because very few families actually do the test. There is a social reluctance to accept cancer among women. Except very few educated families, socially a breast or gynaecological cancer is widely considered a bad omen in India."
Numbers on the rise
There are four main types of women’s cancers around the world: breast cancer, cervical cancer, ovarian cancer and uterine or endometrial cancer. Breast and ovarian cancer have sub-types. Because of the HPV vaccine, the easy pap smear test and increased awareness about hygiene through government-accredited community health workers, the number of cervical cancers in India has come down.
Dr Yogesh Kulkarini, a gynaecological oncology surgeon, a consultant at Mumbai’s Kokilaben Dhirubhai Ambani Hospital says, “We rarely get cervical cancer patients. Most patients of ovarian cancer come with advanced disease because there are no screening tests or definitive early symptoms of ovarian cancer. And there are uterine or endometrial cancer patients, which are simpler to diagnose." Both Kulkarni and Dr Maheshwari say like breast cancer, ovarian cancer has links to genetic mutations and lifestyle, and numbers are on the rise.
The numbers are scary, although the rise in cases has to be taken in conjunction with the fact that more and more women are being diagnosed in the last decade. A study released this year by the Noida-based National Institute of Cancer Prevention and Research says one woman dies of cervical cancer every eight minutes in India. The average age of breast cancer in India is almost a decade lower than in the West. One of every two woman newly diagnosed with breast cancer doesn’t survive in this country. According to a report by EY and the industry body FICCI released last year, titled ‘Call for Action: Expanding cancer care for women in India, 2017’, cancer among women in India is estimated at 700,000. India topped the list for mortality for breast and cervical cancers and reported the second highest incidence for ovarian cancer globally.
The Indian healthcare system is already overburdened—the government spends a mere 1.2% of gross domestic product or GDP on healthcare—and research for women’s health are way below in the list of priorities. “We are looking at a breast cancer epidemic in a few years. It is a largely urban disease related to lifestyle, late marriages, late or no pregnancies and other factors," says Dr Mandar Nadkarni, consultant surgical oncologist at Kokilaben Dhirubhai Ambani Hospital who specializes in breast oncology. He says awareness about breast cancer prevention in India is still not enough. “Oncologists treating breast cancer everywhere in India should make women aware of the need for genetic testing although percentage of hereditary cancers are just around 5%. The woman should have the knowledge and the choice to have prophylactic surgery," Nadkarni adds.
Although cervical cancer numbers have gone down, the number of women being detected is still more than 100,000 and the annual death rate is more than 75,000. But the HPV vaccine is not part of the government’s immunization programme.
India has more than 1.5 million new cases of cancer every year, a number that is much less than an economically more advanced country like the US probably because we have a vastly younger population and the chances of getting cancer get higher with age. But survival rates are poor, and according to a study published earlier this year in The Lancet Oncology, more women are diagnosed with cancer than men. Breast, cervical, ovarian and uterine cancer account for more than 70% of the cancers in women in India.
Awareness is prevention
Both Kulkarni and Maheshwari are two of around seven surgeons in Mumbai who are specialized in gynaecological cancer surgeries. Surgical oncologists usually perform surgeries for ovarian or uterine cancer, but the number of specialists are inadequate considering the number of cases diagnosed every year. Maheshwari says,“Often women come to me at Tata from many parts of India after a first surgery done without the right investigations. When we have to treat patients with a second surgery, the job becomes doubly difficult and the disease is already in an advanced stage." Usually gynaecologists and obstetricians perform most surgeries of the uterus, ovaries or fallopian tubes. Detailed investigations such as scans and biopsies when something looks suspicious is still not routine in most parts of India.
Most importantly, and crucial to prevent gynaecological cancers, is attention to women’s health, starting with adolescent health. Girls get used to suppressing menstrual pain with a painkiller from their teenage years, and habitually ignore pain and other symptoms that manifest in the pelvis and abdomen as part of being women. Hormonal disorders such as Polycystic Ovary Syndrome (PCOS) is increasingly rising among Indian women below 20.
I had endometriosis, a painful condition resulting from irregular shedding of the lining of the uterus, for around 20 years. There is no medical cure for it, only symptomatic relief, and having a hysterectomy or oophorectomy (removal of the uterus) was a painful choice that I kept postponing till one of the endometrial cysts in my left ovary turned cancerous last year.
Vijay Bhatt, a leadership coach who has been free of cancer after being diagnosed 17 years ago, and who heads Cancer Awakens, a support group and counselling platform for patients and survivors, says he and his team of “cancer thrivers" help after treatment is ongoing or over—in the healing. “How do you use cancer as a new way of looking at life, and letting go of our old selves without missing out on life? That’s where healing, as opposed to just treatment, comes in," Bhatt says.
I recently attended a support group meeting for women’s cancers at a hospital in Mumbai. Most support groups for cancer are at hospitals. NGOs, wellness companies or other organizations tie up with hospitals for space and resources and patients of the hospitals attend the meetings. Questions veered from chemotherapy side effects to the cost of medicines, nothing about the psychological trauma. Viji Venkatesh, region head, India & South Asia, the Max Foundation, which works in the field of cancer worldwide, says, “Patients get very little time with their doctors. Most of the time there are no assistant doctors who can help them, and their concerns are very immediate."
Denial is often a factor that delays diagnosis and treatment even among women who are socially and economically empowered. The first step towards healing from cancer is owning the diagnosis, and treating it as just a disease. For a majority of women, cancer in their breasts or ovaries is something to be hidden.
