The secret and shame around women's cancers

Illustration: Jayachandran / Mint

Mumbai: A year ago, after a weight reduction surgery and the beginning of chemotherapy for low serous ovarian cancer, I started looking for support groups for ovarian cancer. Just after a diagnosis of cancer, the non-cancer population may seem insufficient to help, sometimes during our second life, even superficial. What a new cancer patient needs, in addition to the best personalized medical treatment, is the assurance that she is not the only one who has what the world sees as a death sentence. The gap between good medical treatment and healing is wide, often insurmountable. How can we accept the diagnosis itself and learn to move forward in life knowing that cancer can come back, but that awareness should not prevent us from living meaningfully?

I connected with women around the world through online support groups and friends of friends who had cancer. I think the actor Manisha Koirala, the leading cause of ovarian cancer in India, has been free from cancer for more than five years. She had undergone the same operation as me. "You may never be able to recover your old body. Understand what your new body likes, be nice to it, she told me once. Gold words.

The only Indian support group for ovarian cancer that I found was Teal Warriors, based in Delhi. (I still do not know any other Indian women who have had my variety of low-grade ovarian cancer-serosa, which accounts for about 10% of all ovarian cancers in the world.)

It was in September, the month of ovarian cancer awareness. The group members were busy organizing events. Sunita B. Kapur, then 51, and after four years of treatment for high-grade ovarian cancer, was a key member of the group. The following year, we talked a lot, as she continued to intermittently write a blog and attend weddings in her larger Punjabi family, taking the heavily embellished-ghagras-no-hair look with plumb. She often said, "Most of the writings and speeches about cancer are about survivors who have left the disease behind. There are other types of survivors, those who live with the disease, but who receive treatment and continue to live. Kapur makes living with cancer seem unheroic. Teal Warriors has played an important role in his new life. She was open about her illness on social networks, her blogs and everyone she and her husband know about.

Teal Warriors was created by Ritu Bedi, a survivor of ovarian cancer. Bedi was diagnosed in her forties while she was on a working trip abroad. Until then, his doctor in Delhi has ignored persistent symptoms such as bloating, indigestion like irritable bowel syndrome or IBS. She underwent a tooth reduction surgery and a series of painful intraperitoneal chemotherapy treatments. Bedi has just finished his fifth year without cancer – a milestone because he has been told that only two in five women are five years old. "Cancer has been an excellent teacher, it has taught me the essence and the cycle of life and the power to give."

A social taboo

Gender-related cancers have a huge sense of shame and taboo. The speculations on the causes of cancer Sonali Bendre, despite its openness to his diagnosis in several online sites have come close to the bizarre, one of them being "she wears tight clothes."

The biggest obstacle to cancer treatment is often the perception of the disease. Dr. Amita Maheshwari, Head of Gynecologic Oncology at Tata Memorial Hospital, Mumbai, the largest and most comprehensive cancer treatment destination in India, says, "Many cancer patients and their families in Mumbai are not coming in the hospital here. The hospital itself is a taboo.

With female cancers, the feeling of shame is more due to the fact that it is linked to reproductive health and, in the case of breast cancer, to recognized standards of feminine beauty. If the mother has it, the marital prospects for her daughter are considered mediocre. Most of the women I've talked to for this story, who have or have had breast cancer or gynecological cancer, said that they've never had the opportunity to Be part of a support group and they chose not to talk openly about their experiences. "I went to the hospital, took my chemo, took the train and went home," says a 40-year-old mother of two, Marathi. of a triple breast cancer, difficult to treat.

I spoke to a 40-year-old 40-year-old mother of Mumbai, who lost her mother in the early 1990s, tested positive for BRCA in her early thirties, and decided to undergo a double mastectomy at the age of 34 years old. Hollywood actress Angelina Jolie's widely publicized decision to surgically remove her breasts and ovaries because of her family history and positive BRCA mutation has inspired a handful of women like this Mumbai woman around the world. It belongs to the Brahman community of Konkonastha on the west coast; The latest genome research shows a close link between this community and the BRCA1 and 2 gene mutation.

"The council is the most important part of this decision. It was a difficult surgery, there are psychological and physical implications. I lost all sensation in my breasts, but it was always worth having the choice. My husband and my family supported by choice completely, which made the job easier, "she says. His risk of having breast cancer decreased by 98% and ovarian cancer by 50%.

Dimple Bawa, who launched the Cheers for Life Foundation in Delhi to raise awareness and support for breast cancer patients after experiencing breast cancer herself and achieving a positive BRCA2 test, said: I want to talk of this disease, or other people know that they are fighting. With constant counseling and awareness programs, I could see subtle changes in the behavior of the women who came to us.

Dr. Rajan Datar, managing director of Datar Genetics, a genome screening facility for all types of cancer based in Nasik, said: There is a social reluctance to accept cancer in women. Apart from very few educated families, breast cancer or gynecological cancer is widely regarded as a bad omen in India.

Figures on the rise

There are four main types of women's cancers in the world: breast cancer, cervical cancer, ovarian cancer, and uterine or endometrial cancer. Breast and ovarian cancer have subtypes. Thanks to the HPV vaccine, easy-to-administer Pap test and increased hygiene awareness through government-approved community health workers, the number of cervical cancers in the community is increasing. uterus in India has decreased.

Dr. Yogesh Kulkarini, a surgeon in gynecologic oncology, a consultant at Kokilaben Dhirubhai Ambani Hospital in Mumbai, says, "We rarely get cancer patients from the cervix. Most patients with ovarian cancer have advanced disease because there is no screening test or any definitive early symptoms of cancer of the ovary. ovary. And there are patients with cancer of the uterus or endometrium, which are easier to diagnose. Kulkarni and Maheshwari say that ovarian cancer has links to genetic mutations and lifestyle.

The numbers are scary, although the increase in the number of cases should be associated with the fact that more and more women are diagnosed over the last decade. A study published this year by the National Institute of Cancer Prevention and Cancer Research, based in Noida, says that a woman dies of cervical cancer every eight minutes in India. The average age of breast cancer in India is almost ten years lower than in the West. One in two women recently diagnosed with breast cancer does not survive in this country. According to a report by EY and FICCI published last year entitled "Call for Action: Expanding Cancer Care Among Women in India in 2017", India's Women's Cancer is estimated at 700,000. India was at the top of the list for breast cancer and cervical cancer mortality and recorded the second highest incidence of ovarian cancer in the world. .

India's health care system is already overloaded – the government spends only 1.2% of gross domestic product or GDP on health care – and research for women's health is well below the list of priorities. "We are looking at an epidemic of breast cancer in a few years. It is an essentially urban disease related to lifestyle, late marriages, late or late pregnancies and other factors, "says Dr. Mandar Nadkarni, consultant on surgical oncology at the hospital Kokilaben Dhirubhai Ambani specializes in breast oncology. He says that awareness of breast cancer prevention in India is still not enough. "Oncologists treating breast cancer throughout India should make women aware of the need for genetic testing, although the percentage of hereditary cancers is around 5%. The woman should have the knowledge and choice to undergo prophylactic surgery, "adds Nadkarni.

Although the number of cervical cancers has decreased, the number of women detected is still greater than 100,000 and the annual mortality rate is above 75,000. But the HPV vaccine is not part of it. of the government's immunization program.

India has more than 1.5 million new cases of cancer each year, a number well below that of economically more advanced countries like the United States, probably because our population is very young and the risks of cancer increase with age. But survival rates are low 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 cervix cancer accounts for more than 70% of cancers in women in India.

Awareness is prevention

Kulkarni and Maheshwari are two of seven Mumbai surgeons specializing in gynecological cancer surgery. Surgical oncologists usually perform surgeries for ovarian cancer or the uterus, but the number of specialists is insufficient considering the number of cases diagnosed each year. Maheshwari says, "Women often come to my home in Tata in many parts of India after an initial surgery performed without good investigations. When we have to treat patients with a second surgery, the work becomes doubly difficult and the disease is already in an advanced stage. In general, gynecologists and obstetricians perform most surgeries of the uterus, ovaries, or fallopian tubes. Detailed examinations, such as scans and biopsies, when something seems suspicious, are still not common in most parts of India.

More importantly, and essential to prevent gynecological cancers, attention is focused on women's health, starting with adolescent health. Girls are accustomed to suppressing menstrual pain with an analgesic as early as their teens and usually ignore the pain and other symptoms that manifest themselves in the pelvis and abdomen during women's lives. Hormonal disorders such as polycystic ovary syndrome (PCOS) are increasing in Indian women under 20 years of age.

I had endometriosis, a painful condition resulting from irregular excretion of the lining of the uterus, for about 20 years. There is no medical cure, only symptomatic relief, and having a hysterectomy or ovariectomy (removal of the uterus) was a painful choice that I pushed back until it was clear. one of the cysts of the left endometrium becomes cancerous last year.

Vijay Bhatt, a cancer-free leadership coach diagnosed 17 years ago, who leads Cancer Awakens, a support group and a counseling platform for patients and survivors, says his team of current or upcoming come – in healing. "How do you use cancer as a new way of looking at life and giving up on life without missing a life? This is where healing, as opposed to treatment, comes in, "says Bhatt.

I recently attended a meeting of a support group for female cancers in a Mumbai hospital. Most cancer support groups are in hospitals. NGOs, wellness companies or other organizations link to hospitals to get space and resources, and hospital patients attend meetings. The questions evolved from the side effects of chemotherapy to the cost of drugs, nothing from psychological trauma. Viji Venkatesh, Head of Region, India and South Asia, the Max Foundation, which works in the field of cancer around the world, says: "Patients have very little time with their doctors. Most of the time, no doctor's assistant can help them and their concerns are very immediate.

Denial is often a factor that delays diagnosis and treatment, even among socially and economically independent women. The first step towards cancer recovery is to have the diagnosis and treat it as a disease. For the majority of women, breast or ovarian cancer must be hidden.