Women who are blind play a critical role in identifying possible breast cancers

Meenakshi Gupta has been blind since birth. And yet she can identify what many patients and medical specialists miss: the tiniest lumps in a woman’s breast that could be malignant.

One of 30 blind women from India trained as part of a global project called “Discovering Hands,” Gupta, 31, has been working for the past two years as a medical tactile examiner at Medanta Hospital in the northern Indian city of Gurgaon.

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

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

Dr. Frank Hoffman, a gynecologist and founder of the program, says he was appalled by the sheer numbers of cases of early-stage breast cancer that were being missed, not just in Germany but around the world.

“It occurred to me that we could improve the outcome of the breast examination if we were to specially train others to do it as support staff for doctors,” he says. He decided to focus on training people who were blind; studies that have shown that the brains of blind people can develop a heightened sense of touch.

Like all the examiners, Gupta was rigorously trained by four sighted trainers who taught her about the female body, in particular the anatomy of the breast. Her training lasted 9 months: a 6-month study course and a 3-month internship. She was given mobility training as well — she uses a white cane to make her way independently to the hospital and asks for help to navigate traffic-ridden roads if she needs it. The effort is worth it.

An impressive success rate

“They were so successful that they were 30% better at detecting tissue changes than doctors,” Hoffman says of the trainees. “The MTEs can identify lumps at the very initial stages, even before they show up on imaging scans.”

Over the years, several independent studies have verified this. A pilot study conducted in 2023 by the department of obstetrics and gynecology at the Erlangen University Hospital in Germany involved 104 patients and concluded that clinical breast examinations by MTEs who were visually impaired were as accurate in identifying potentially cancerous tumors as doctors trained in this procedure.

In many cases, a lump in the breast can be noncancerous. Tests are needed to rule out cancer, and the earlier this is done, the better, says Dr. D Pooja, gynecologist and CEO of Apar health, who is not affiliated with the Discovering Hands program. "A MTE's work is very empowering, especially in a low-tech setting when not everyone can have access to mammograms. It eases the burden on doctors who deal with over-crowded waiting rooms too," she says.

Examiners like Gupta are proving to be a powerful force for identifying breast cancer and allowing for effective treatment , says Dr. Pooja, who adds: "However, we need more clinical studies to establish how their work adds value to the health-care system."

As an arts graduate who had studied science only in high school, Gupta says it was challenging to learn about breast anatomy and conduct clinical exams.

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. Probing gently with fingertips and using varying pressures, they closely examine every centimeter of the breast. The process takes up to an hour for both breasts. If the MTEs locate a lump, mapping the breast this way helps the doctor locate it quickly and precisely for further examination.

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 any lump, we make a note of its location, depth, size and shape. Our duties end with the examination. We’re not authorized to say whether it could be cancerous or not."

A nervous start

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

“To build our understanding and confidence at first, the doctor would ask us to identify the nature of the lump in patients who had already been diagnosed with breast cancer,” she says. They spent months noting down the feel, size, shape and consistency of these lumps. Soon, they moved on to examining patients who came in for checkups.

“I remember being so nervous that my hands shook when I examined my first patient,” she says. The responsibility weighed on her: “This is a living person. What if I miss anything? I was worried.” That anxiety eased within a couple of months, as her experience and confidence grew.

She now sees 5 to 8 patients a day, spending roughly an hour with each. On average, she says, one or two tend to have abnormalities. She records her findings on a laptop and flags the cases for follow-up with the doctor.

Many benefits in India

Two women have been instrumental in establishing 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 especially were a very forgotten lot,” Sodhi says. “In addition to providing diagnostic support for doctors who are facing severe overcrowding in waiting rooms, these roles give visually impaired women who often struggle to find jobs, dignity and purpose,” she says.

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

Kaur says that another issue 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 India’s Ministry of Health and Family Welfare, breast cancer is one of the most common cancers among women, with roughly 75,000 deaths every year. One of the biggest reasons is the lack of access to mammography equipment, especially in rural areas where mammograms are not a part of routine care.

“I’m very aware that I treat a disease that’s potentially curable if women come in time,” Kaur says. “But in India, this is a huge problem. Women may sense that they have a lump, but because of the stigma of having their breasts examined, many delay getting treatment until it’s too late.” In India, the biggest issue is that women don't go to the doctor on time. That's what causes the delay in diagnosis --there is still stigma involved and in such a conservative society, women are hesitant to expose their breasts to doctors for medical check ups. Nearly half of the cases Kaur sees are women who 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 of every two women diagnosed with breast cancer in India survives. Studies have found that the disease occurs at a younger age for women in India, (between the ages of 45-49) compared to the West, and because of this, survival rates are poor. That’s why it’s critical to catch the disease early, says Kaur.

The fact that breast examinations are being done by blind women has helped ease some of the stigma around going for a check-up, she says. Because the MTEs are blind, the women who come in for an exam do not feel embarrassed or ashamed about exposing their breasts. This was something that health-care professionals hadn’t quite thought about when they began the program in Germany, Hoffman says.

If more MTEs were trained and breast examinations became part of a routine checkup in hospitals across the country, it could save a lot more lives, Sodhi says. However, that's not a goal that can be easily met.

Currently, the intensive training for each MTE costs around 2 lakh rupees — about $2,500. “We are funded by private donors and the number of MTEs we train every year would depend on this funding,” Sodhi says. “But we’re hopeful we can expand soon. If so, Discovering Hands can save many more lives. It’s heartening when you think of how these women who cannot see themselves are showing us the way.”

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

Copyright 2024, NPR

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