Women who are blind play a critical role in identifying possible breast
cancers
By Kamala Thiagarajan
Meenakshi Gupta, who is blind, works as a "medical tactile examiner" to
identify breast tumors. The mannequin is used in the training program
for would-be examiners. The strips enable the examiners to identify and
carefully examine each zone of the breast.
She 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.
India Centre for Blind Women and Disability Studies (NABCBW), Delhi.
India Centre for Blind Women and Disability Studies in Delhi.
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.
A model of skin used for medical training for breast exams at the
National Association of the Blind India Centre for Blind Women and
Disability Studies in Delhi.
Smita Sharma for NPR
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.
Meenakshi Gupta, 32, pastes tape on a dummy to divide the body into
zones for breast exams.
“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 treatmentuntil 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
https://www.npr.org/sections/goats-and-soda/2024/09/08/g-s1-15690/breast-cancer-tumors-women-blind
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