Blind women play a crucial role in detecting possible breast cancer

Meenakshi Gupta has been blind since birth. And yet she can see what many patients and doctors miss: tiny lumps in a woman’s breast that could be malignant.

Gupta, 31, is one of 30 blind women from India who have been trained as part of the global Discovering Hands project. She has been working as a medical tactile examiner at Medanta Hospital in the northern Indian city of Gurgaon for two years.

The program was introduced in India in 2017 and is now part of major hospitals in key Indian cities: Bengaluru, Varanasi, Gurugram and Delhi. In a country where equipment to perform mammograms is scarce, the expertise of these examiners is crucial.

The Discovering Hands project itself was first created a decade earlier in Germany.

Dr. Frank Hoffman, gynecologist and founder of the program, says he is appalled by the sheer number of cases of early-stage breast cancer that are missed not only in Germany but worldwide.

“It occurred to me that we could improve the results of breast examinations if we specifically trained others to perform this exam as assistants to doctors,” he says. He decided to focus on training blind people; studies have shown that blind people’s brains can develop a more developed sense of touch.

Like all examiners, Gupta underwent rigorous training from four sighted instructors who taught her all about the female body, especially breast anatomy. Her training lasted nine months: a six-month study course and a three-month internship. She also received mobility training – she uses a white cane to get herself to the hospital on her own and asks for help when needed to navigate busy roads. The effort is well worth it.

An impressive success rate

“They were so successful that they were able to detect tissue changes 30% better than doctors,” Hoffman says of the trainees. “The MTEs can detect nodules in their early stages, even before they become visible on imaging scans.”

Over the years, several independent studies have confirmed this. A 2023 pilot study from the Department of Obstetrics and Gynecology at the University Hospital Erlangen in Germany included 104 patients and concluded that clinical breast examinations by visually impaired MTEs were as accurate in identifying potentially cancerous tumors as physicians trained in the procedure.

In many cases, a breast lump may not be cancerous. Tests are needed to rule out cancer, and the earlier this happens, the better, says Dr D Pooja, a gynecologist and CEO of Apar Health, who is not affiliated with the Discovering Hands program. “The work of an MTE is very encouraging, especially in a low-tech environment where not everyone has access to mammograms. It also takes the pressure off doctors who have to deal with crowded waiting rooms,” she says.

Investigators like Gupta are proving to be an important force in detecting breast cancer and enabling effective treatment, says Dr. Pooja, adding, “But we need more clinical trials to determine what added value their work brings to the health care system.”

As a liberal arts graduate who studied only science in high school, Gupta said learning about breast anatomy and conducting clinical examinations was challenging.

In their training sessions, the MTEs practice on plastic models with silicone breasts. “One of the first things we learned was how to map the breast,” she says. Using skin-friendly tape, they divide each breast into four zones. Using gentle fingertips and varying levels of pressure, they examine every inch of the breast in detail. The process takes up to an hour for both breasts. If the MTEs discover a lump, this mapping of the breast helps the doctor to locate it quickly and precisely and examine it further.

MTEs document their findings to share with doctors, Gupta says. “We examine the consistency of each area of ​​the breast: is it hard or soft? If we find a lump, we note its location, depth, size and shape. Our duties end with the examination. We are not authorized to say whether it might be cancer or not.”

A nervous start

After completing her training, Gupta started working as an intern at Medanta Hospital.

“To increase our understanding and confidence, the doctor first asked us to identify the type of lump in patients who had already been diagnosed with breast cancer,” she says. They spent months noting the feel, size, shape and consistency of these lumps. They soon moved on to examining patients who came in for follow-up appointments.

“I remember being so nervous that my hands were shaking when I examined my first patient,” she says. The responsibility weighed heavily on her: “This is a living person. What if I miss something? I was worried.” This fear subsided within a few months as her experience and confidence grew.

Today, she sees five to eight patients a day and spends about an hour with each one. On average, she says, one or two patients have abnormalities. She records her findings on a laptop and marks the cases for follow-up with the doctor.

Many advantages in India

Two women were instrumental in founding the Discovering Hands program in India and training MTEs.

One of them is Shalini Khanna Sodhi, founding director and secretary of the National Association for the Blind, India’s centre for blind women and disability studies in New Delhi. “Blind women, in particular, have been a very forgotten people,” says Sodhi. “These roles not only provide diagnostic support to doctors whose waiting rooms are extremely crowded, but also give dignity and a purpose to visually impaired women who often struggle to find jobs,” she says.

Sodhi’s efforts were supported by Dr. Kanchan Kaur, a surgeon who reconstructs breasts after mastectomy and practices at Medanta Hospital, where Gupta now works. Both women traveled to Germany to observe and learn the technique.

Another problem, according to Kaur, is the lack of breast awareness among Indian women. Not every woman has access to annual mammograms, a screening procedure that is considered routine in other countries. According to the Indian Ministry of Health and Family Welfare, breast cancer is one of the most common cancers in women, killing around 75,000 people every year. One of the main reasons for this is the lack of access to mammography machines, especially in rural areas where mammograms are not part of routine care.

“I am very conscious that I am treating a disease that is potentially curable if women come in time,” says Kaur. “But in India, this is a huge problem. Women may feel they have a lump, but because of the stigma associated with having their breasts examined, many delay treatment. until it’s too late.” In India, the biggest problem is that women don’t go to the doctor in time. This leads to such a delay in diagnosis – there is still a stigma and in such a conservative society, women are hesitant to show their breasts to the doctor for medical examinations. Almost half of the cases Kaur treats are women who only seek treatment at an advanced stage, “when the cancer is very aggressive and the mortality rate is high,” she says.

According to a report by the Indian Council of Medical Research (ICMR), only one in two women diagnosed with breast cancer in India survive. Studies have shown that the disease strikes women in India at a younger age (between 45 and 49 years) compared to the West, and that is why survival rates are low. That is why it is so important to detect the disease early, says Kaur.

The fact that the breast exams are performed by blind women has helped to reduce some of the stigma associated with having a check-up, she says. Because the MTEs are blind, the women who come in for the exam don’t feel embarrassed or awkward about showing their breasts. That’s something health professionals hadn’t really thought about when they started the program in Germany, Hoffman says.

If more MTEs were trained and breast exams became routine in hospitals across the country, many more lives could be saved, Sodhi says. But that’s not a goal that will be easily achieved.

Currently, the intensive training for each MTE costs about 200,000 rupees – about $2,500. “We are funded by private donors and the number of MTEs we train each year depends on that funding,” says Sodhi. “But we hope to expand soon. If we can do that, Discovering Hands can save many more lives. It’s encouraging to think of how these women who can’t see themselves are showing us the way.”

Kamala Thiagarajan is a freelance journalist based in Madurai, South India. She covers global health, science and development and has been published in The New York Times, The British Medical Journalthe BBC, The Guardian and other outlets. You can find them on X @kamal_t

Copyright: NPR