‘I try to imagine what it looks like inside without a uterus, cervix, ovaries. What will my vagina be connected to... I didn’t know I was attached to my uterus. I never really thought about it… they don’t say there will be this huge absence. Or that we may have to take some of your vagina’ —Eve Ensler, In the Body of the World
Five years ago, Swati, a writer who recently moved to Delhi from Kolkata, found her periods turning irregular. She ignored it until her periods just stopped. She told her mother, who took her to a gynaecologist. Swati still didn’t think it was a serious problem. But that changed after a couple of tests, when she was told that there was a tumour in her uterus. The doctor told her it didn’t look bad. She was operated upon, and, as per protocol, the tissue sample was sent for a biopsy. The diagnosis was cancer of the cervix. She was told her uterus and one ovary would have to be removed to keep the cancer from spreading to other parts of the body. The doctor asked her if she wanted to keep the other. “I kept thinking to myself, ‘What use is a lone ovary without a uterus?’ I told them to take it all out,” she says.
The year was 2008 and Swati was just 21 then. Cervical cancer is rare in someone that young, but her genetic probability of acquiring the disease was high. Doctors told her that she had inherited a ‘faulty gene’ from her mother. After her surgery a week later, Swati went through 27 sessions of radiotherapy (a couple internal and the rest external). She has now been cancer free for four-and-a-half years and goes for an annual health check-up. She also has to get a Pap smear test—named after pathologist George Papanicolaou, its originator—done every three years for the rest of her life. “I find it humiliating,” she says, “to have to lie half naked in hospitals with all sorts of people around you and getting poked about by strangers.” The process put her off sex and even other forms of physical intimacy for a while. She has moved on, but is yet to come to terms with what she had to endure. “This is a disease,” she says, “A lot of women have it and I know I don’t have to be ashamed of it. But I don’t want the pity party to start again. I can’t bear it.”
Swati is among a large number of women in India who get this form of cancer. According to a 2010 report published by the National Cancer Institute, it is the second most common cancer in women worldwide after breast cancer. India has the third highest number of recorded cases of it. The last specific research study on cervical cancer, done in 2008 by Globocan, reported 134,420 new cases recorded in India and an annual death count of 72,825. A projection made on current trends by the International Agency for Research on Cancer puts the annual death count at 132,745 by 2025.
Cervical cancer is as stealthy as it is deadly. It develops in the tissues of the cervix, which connect the upper body of the uterus to the vagina. The cancer can stay latent for up to10 years and tends to start with a condition called dysplasia, a medical term to describe ab- normal cell development. Undetected, these changes can develop into cervical cancer and spread to other parts of the body, including the lungs and liver. Patients with cervical cancer usually don’t show symptoms until it has advanced and spread.
Dr Nitish Rohatgi, head oncologist, Max Hospital, Saket, says, “There are no clear symptoms of cervical cancer to begin with. Only when the cancer becomes rampant does it begin to show symptoms. Even then, these are vague symptoms like pain in the lower abdomen, extra discharge, problems in the vaginal area, etcetera.”
Cervical cancer can develop in women of all ages, but the peak age for it in India is 45-54 years. According to the Population Based Cancer Registries (PBCRs) set up under the National Cancer Registry Programme to track cancer prevalence, two of every 12 women in India in the 45-54-year age group suffer from the disease. The general impression is that its prevalence is higher in areas where women lack awareness of its risk factors, access to screening and health services. Dr Renuka Sinha, former head of Safdarjung Hospital’s obstetrics & gynaecology department and now a senior consultant at Apollo Hospital, says, “Even in so-called developed areas, very few women come to get tested or screened because in our country there is no concept of preventive health.”
Consider the case of Jasminder Sandhu, a 53-year-old resident of northwest Delhi. She had a dull ache in the lower left side of her abdomen for two years before she could bring herself to see a gynaecologist. “I know how horrible this sounds,” she says, “but I didn’t really think about it.” As a middle-class housewife whose life revolved around her children and husband, she says she had little time for anything other than ensuring the well-being of her family. The pain, which she describes as insignificant and sporadic at the time, was something she thought was menses related. Then one day it exploded and she just couldn’t take the pain anymore. That was when she decided to visit a gynaecologist. “I was certain it was a minor infection and I would be prescribed antibiotics for it. I had never gotten sick in my life. The most I’d ever contracted was viral fever.” When the doctor called her for a thorough check-up, she was diagnosed with third-stage cervical cancer.
Sandhu remembers feeling very stupid at having ignored what her body was trying to tell her. “I was just 51. I couldn’t bear the thought of losing my children. I cried all the way home and for the next three days. After that, I was ready to face my fate.” The doctor checked her lymph nodes for cancer by doing CT and MRI scans. It had spread to her uterus and she underwent extensive internal and external radiation to get rid of the cancerous cells. The treatment worked, thankfully. Not many women survive cancer past its third stage.
The Human Papillomavirus (HPV) is the most common risk factor for cervical cancer. It is also the most common sexually transmitted infection. According to America’s Center for Disease Control and Prevention, at least half of all sexually active people get HPV at some point in their lives.
In most women, especially those under 30, HPV does not lead to cancer and the viral infection heals spontaneously within a year or two. If the infection persists, however, it increases the risk of developing cancer. Even so, this should not alarm everyone diagnosed with HPV. There are 40 types of HPV infections, but it is mainly types 16 and 18, specifically, that are observed to be high-risk precursors of cervical cancer.
HPV is not the only risk factor for cervical cancer either. Apart from this viral infection, additional factors like smoking, oral contraceptive use, poor hygiene, high parity (the number of times a woman has given birth) and other sexually transmitted infections increase the risk.
What complicates India’s battle against cervical cancer, however, is the sexual nature of HPV transmission, which makes it taboo for women to get themselves screened regularly. “In India,” says Dr Rohatgi, “women are very private and for them to develop an infection that is sexually transmitted and usually associated with promiscuity is mortifying.” While ‘HPV’ sounds a little like ‘HIV’ to the uninformed, the truth is that there is no clear link to be drawn between HPV and promiscuity. It is quite common in India, and most women contract it from their partners.
Forty-two-year-old Rama Swarup has been married for the past 22 years. The mother of three children, she had never been to a gynaecologist till the time she started getting irregular periods and severe cramps in her lower abdomen. “Even my children were delivered through midwives. There was never really a need to see a doctor,” she says, waiting patiently for her turn at radiotherapy at Delhi’s Rajeev Gandhi Cancer Institute. “It was only once the pain became unbearable did I decide to come here. I did not know what to expect. When they said ‘cancer’, I did not believe it,” she says.
According to Dr Tanya Buckshee, senior consultant of reproductive medicine, surgery and assisted reproductive techniques at Max Medicentre, “It is only when these women are in distress that one has the possibility of screening them without resistance. That is because they are more open to medical procedures at the time and willing to do anything to stop that pain.”
Dr Sneha Aggarwal, a senior gynaecologist who runs a private hospital in the rural belt of Mallihabad near Lucknow, says that the prospect of an examination of their private parts is so alien to most women in the area that they giggle at the thought of it. “There was this one woman who just leapt off the table the moment I started examining her,” she says, “And there are many cases of women who come to get screened but never follow up with treatment.”
Poor follow up of check-ups is also a problem in cities. Because of the lack of a ‘Call Recall System’ like the UK’s, which invites women for regular screenings and then monitors their results, a lot of patients in India don’t take the screening seriously and seldom return. “They don’t realise that if tested early, it can save their life,” says Dr Buckshee.
Since most rural patients are illiterate, doctors find it hard to convey what the examination process involves. “Sometimes it’s impossible to explain what I am doing and why. Most of them are very uncomfortable with the thought of getting tested,” says Dr Buckshee.
The test procedure is tedious and expensive. One needs to first get a Pap smear test to detect any unhealthy/abnormal cells in the cervix. If positive, the doctor must figure out the exact area of infection through a colposcope and do a biopsy to determine if these cells are cancerous. Abnormal cells need not always be cancerous.
Since cancer takes almost a decade to develop, anyone above the age of 30 is advised to undergo a Pap test every three years. Even though the average Pap test costs Rs 760, the subsequent tests for cancer could take as much as Rs 3,000. This poses a deterrent to poor women like 39-year-old Lakshmi Kumari. A single mother, her husband died two years ago in a car accident. She barely manages to scrape through the month on her meagre earnings as a seamstress, and had to borrow from friends and family to get the money for her initial tests and screening. Luckily for her, insurance covered the treatment, which can cost anything from Rs 50,000 to Rs 6 lakh, depending on the stage of cancer. “There was no way I could afford my own treatment,” she says, “I would have died for sure.”
In her third cancer-free year now, Kumari says things are looking up for her. She is waiting to cross the five-year mark and be declared cancer free. “I will only be able to breathe free when this disease is completely out of my system.” Though instances of a cancer relapse are rare, doctors recommend regular Pap smears even for cancer-free patients till the age of 60.
Countries like the US and Mexico have been able to control the incidence of cervical cancer through immunisation. Two vaccinations available against the disease are Gardasil and Cervarix. They were developed to prevent infection from HPV 16 and HPV 18, which are implicated in 70 per cent of cases, according to a paper, ‘Human Pappillomavirus: Current Issues and Future’, in the Indian Journal of Medical Sciences. Gardasil not only immunises one against the two perilous forms of HPV, it also assures immunity from genital warts. The effects of these vaccines last up to five years and booster doses may be needed after that.
These vaccines, however, do not treat either HPV or genital warts; they only prevent infection. According to medical guidelines, the appropriate time to get vaccinated is after adolescence and before one is sexually active. “Even though it is best to get vaccinated when you are not yet sexually active,” says Dr Sinha, “I still recommend the vaccine to most of my patients [even if they’re active].”
At Rs 12,000, the vaccine pack is expensive, and needs to be taken in three doses (the latter two at gaps of a few months). It is expensive because it is not made in India, but the Government is trying to make cheap versions available. Globally, 65 million women have been vaccinated with Gardasil in over 100 countries, as of 2010, according to the US Food and Drug Administration.
In a country as poor as India, it is impossible for the Government to control the menace without a national vaccination programme or subsidy regime for screening tests. Doctors recommend the vaccine, but hardly a few show interest in immunisation. While vaccination vastly lowers the risk of cervical cancer, it does not entirely eliminate the possibility. So, approaching middle-age, even vaccinated women must have themselves screened.
It will be a long haul, the battle. Even if vaccination among the youth is universalised, it would still take decades to contain cervical cancer in India. This is because there are vast numbers of sexually active women who harbour HPV already and remain at risk.
Recently, a cost breakthrough was made with cancer testing. The medical establishment confirmed the efficacy of a new acetic acid test popularly known as the ‘vinegar test’. Used at first in Turkey and some African countries, it is cheap enough to make cancer testing accessible to women of poor families in India. The test relies on swabbing the cervix with a specific concentration of vinegar (usually 4 per cent acetic acid) to spot abnormal cells: those that turn white are abnormal.
Positive testers are then put under a Pap smear.
Dr Aggarwal has been conducting vinegar tests as a cheap screening method for women in Lucknow and Bareilly for a while now. In most cases, she says, the results are accurate. "Even then, it is difficult to get these women to go for further tests,” she says.
Last month, Tata Memorial Hospital in Mumbai revealed that a study it had done has established that the vinegar test is effective. Begun in 1998, its research project covered about 150,000 women between the ages of 35 and 64 with no cancer history. One group of 75,360 women had vinegar tests done every two years. The other ‘control’ group of 76,178 women living in the same area was given only awareness on symptoms of the disease. At the end of the study period, a fraction of women in both groups developed cancer, but the incidence of it in the vinegar-screening sample was significantly—31 per cent—lower than that in the awareness group.
Dr Surender Srinivas Shastri of Tata Memorial Hospital, who led the study, said that it isn’t possible to rely on Pap smear screening in poor countries because people just cannot afford it. Not only is the vinegar test cheap in contrast, it does not even require a medical practitioner to perform it. Volunteers can be taught to do it in a two-week programme. “We now have a method that could in a very simple way reduce cervical cancer mortality in low-resource countries like India,” said Shastri at a recent meeting of the American Society of Clinical Oncology.
The Tata Memorial Hospital study, however, also showed that even free cancer treatment was a hard sell in a country that stays stubbornly conservative. As of now, only 3 per cent of women in the country get screened for cervical cancer annually and these tests are conducted mainly in urban hospitals. Even if the Government provides low-cost screening options to women, the main problem is likely to be resistance by women themselves. “Until you break the subservience of women, where they cannot actively control their health and have to rely on their fathers or husbands to make small decisions,” says Dr Aggarwal, “it will be hard to convince them how they benefit from screening.”