Cancer Screening in India: Sharing Knowledge to Combat Fear and Build Hope
By Dr. Sree Devi Merum
“Why is this happening to me?”
That is the question I hear most often from women who come to our primary health center in Lepakshi, India, where we recently started screening for breast, cervical, and oral cancers.
These women seek our services because they are afraid. They have symptoms like irregular vaginal bleeding or discharge, post-coital pain, or distressing lumps.
“Why me?” a woman will ask. “I’m a good person. I’ve never done anything. I am faithful to my husband and I practice good hygiene. Why is this happening to me?”
We explain to our patients that many factors contribute to cancer, that cancer is not a sexually transmitted disease or caused by poor hygiene, and that, in fact, they may not have cancer at all.
And then we explain to them what screening is and how it works, because they have no idea.
It’s not surprising, really. After all, most physicians in India have not been trained in cancer screening. Yet nearly 8 million people in India died of cancer last year.
No wonder people are frightened: They know about cancer and what can happen to them if they develop cancer, but they have nowhere to go if they think they have symptoms.
That’s beginning to change, thanks to a cancer screening certificate program created by the National Institute of Cancer Prevention and Research (NICPR) in association with the National Health Systems Resource Centre (NHSRC) and Project ECHO. This new program is laying the foundation for population-based cancer screening by training health care providers in screening and treatment modalities for breast, uterine-cervix and oral cancers, which together account for one-third of India’s cancer burden.
Project ECHO is a global collaborative learning and practice network that is working with NICPR and many other organizations to improve health care delivery in rural and underserved areas of India. Together, they are addressing not only cancer screening but health problems such as tuberculosis, hepatitis C, addiction, HIV, and hypertension.
I am convinced that this partnership, which espouses the free sharing of specialized knowledge for the social good, will help transform health care in India for the better.
Here is my experience.
I participated in the cancer screening certificate program last fall. Every week, I logged on for the interactive training, which included didactic lecture, case presentations and discussions, video demonstrations, and reading materials. In particular, the case presentations made our virtual training sessions come alive.
As the medical officer for our primary health center, my focus is on finding and implementing ways to improve health services for our patient population, which comprises 43,000 people living in 42 villages served by nine family health sub-centers staffed mainly by auxiliary nurse midwives (ANMs). I don’t see many patients myself. Instead, I devote a lot of my time to training our ANMs and village health workers — called “ASHAs” — in new skills.
But for the NICPR-ECHO cancer screening program, I needed cases of my own to present during our training sessions. I started screening some of our female patients who presented with symptoms.
In a matter of weeks, I had screened nearly 200 women. I referred 15 of those women to tertiary care centers for further evaluation of potential cervical cancers, another woman for evaluation of a breast mass and another for possible oral cancer.
I felt so motivated by the training I received that I immediately taught two staff nurses and three ANMs how to conduct the cervical cancer screenings.
Word spread quickly around the villages that we were offering basic cancer screening, so now we are doing that on a weekly basis at the primary health center. More importantly, we are developing a tiered screening system and cultivating patient trust at the village level.
The ASHAs are critical to our screening program. ASHAs — Accredited Social Health Activists — are trained female health workers at the frontlines of health in India. They work in the villages, connecting residents with health information, resources, and basic services. The ASHA program started as a way to provide pre-natal and post-natal care in rural areas. It was so successful that it quickly expanded to address other areas of need, such as health education and vaccine delivery.
When it comes to health care, the ASHAs are the first point of contact for patients. They serve as the connectors between the villagers and the family health sub-centers. Patients trust their ASHAs much more than they trust other health workers because they are from the community.
After completing the NICPR-ECHO certificate program, I began training our 43 ASHAs in the basics of cancer screening. When a woman asks an ASHA for help with a personal health issue, the ASHA visits the woman in her home, where her privacy is secure. This is crucial for our patients, who typically feel inhibited about undressing for screening and are concerned about their confidentiality.
The ASHA talks with the patient, asks her whether and where she is experiencing pain, or whether she has other specific symptoms. She examines the woman’s breasts and oral cavity for masses. If she finds anything, she brings the patient to the sub-center.
We keep it simple, so that the ASHAs only have to remember a few fundamentals. At the sub-center, the ANMs will perform screening to determine whether the patient should go to a more advanced medical center for further evaluation and possible treatment.
It’s not a perfect system. We don’t have the resources to serve everyone. It is difficult — sometimes impossible — for patients to travel to the higher medical centers for the next level of assessment. But at least we can offer patients a pathway to diagnosis and appropriate follow-up care.
For many patients, the relief from learning they don’t have cancer is tremendous.
One woman who came to the primary health center had been suffering from severe post-coital pain for more than two years. She simply put up with it. After screening, we referred the woman to a tertiary care center, where the doctors diagnosed her as pre-cancerous and treated her with an ablation. She is doing well now and will return for follow-up in a few years.
One of our ASHAs had a deep lump in her breast that was very hard and sore. She worried because her grandmother had had breast cancer. But the lump turned out to be a fibroid cyst and she was able to get a lumpectomy.
Before, these women had no way to get answers to their questions because they needed access to basic screening. Although we cannot give them definitive diagnoses at the primary health center and sub-centers, we can, after screening, refer them to a more advanced center for further assessment.
And, by having screening available, we can begin educating women about their health, so that they know more about their bodies and how they work and how to stay well and get appropriate follow-up care. With proper information, they don’t have to live in fear.
By emphasizing prevention over acute care treatment, we can produce tremendous benefit for our patients and the entire health care system.
What we have done is a start, and we are making progress. And it would not have been possible without the NICPR-ECHO cancer screening certificate program. It is the cornerstone of our screening approach in Lepakshi. After I acquired new knowledge and expertise by participating in the program, I in turn shared that knowledge and expertise with others so that, together, we could better serve our patients.
When I agreed to participate in the NICPR-ECHO screening program, I had no idea that I was becoming part of a global movement. But now I see what the free sharing of knowledge for the social good can accomplish, and I am convinced that all of India’s health centers should be part of this.