How blind women are helping in early detection of breast cancer

When Noorunnissa was growing up, she wanted to be a doctor, nurse, or a paramedical staff. But she knew it was a futile dream. Blind since birth, the doors of medical education were closed behind her, and Noor went on to do BA in History, Economics, and Sociology from Jyoti Nivas College in Bengaluru.

But what she chose to pursue after her education will now have a bearing on the health of thousands of women. Noor is a medical tactile examiner (MTE), trained to screen women for early detection of breast cancer as part of the Discovering Hands programme.

“I recently screened women as part of a medical camp in a rural area in Karnataka. I explained to them all about the process and why it was important. They started calling me, ‘doctor’. I felt very happy,” says Noor.

In India, a woman is diagnosed with breast cancer every four minutes and one woman dies of breast cancer every 13 minutes.

Though Noor and Ayesha Banu, her friend and colleague who is also blind, may never become doctors, they understand that their work will impact women positively and help in the early diagnosis and treatment of breast cancer.

The two young women are part of the first batch trained by Ashwini Rao and Dhakshayini S, certified trainers of the Discovering Hands programme under EnAble India, an NGO based in Bengaluru.

The programme, the brainchild of Dr Frank Hoffmann, a German gynaecologist, is a breast examination method that trains blind women to be Medical Tactile Examiners (MTEs) without the use of devices, gadgets, or machinery. The programme is designed to detect early breast cancer tumours through palpation of fingers performed by blind and visually impaired women.

Through this method, MTEs can detect breast cancer/tumour at an early stage that measures less than 0.3 mm from their special tactile skills.

The Discovering Hands programme was introduced in India by the National Association Association for the Blind, Delhi, that has already trained four batches  of MTEs.

From EnAble India, Noor and Ayesha work as MTEs with Cytecare Cancer Hospitals in Bengaluru, while the second batch of five women is currently interning at Cytecare and Apollo Hospital in the city.

The journey towards becoming MTEs

Rituparna Sarangi, Senior Manager, EnAble India, says, it fits in with the NGO’s vision of helping and enabling the visually impaired with the necessary skills in their daily lives, education, or livelihood.

Ashwini Rao, Lead, Discovery Hands Programme and trainer explains, “It’s a nine-month training programme, where they must appear for a theory exam after six months. Post this, they must intern for three months, working under a gynaecologist or breast oncologist. After the internship, they come back to Enable India to appear for their practical exams, supervised by Dr Hoffmann himself.”

The women are also taught about the human anatomy and the female reproductive system, with a focused study of the breasts.

Rao adds that EnAble India added three more months to the training period to provide the blind women with computer literacy, mobility, employability, life skills, and counselling. These skills help them navigate the hospital, file reports, interact with patients, and be empathetic towards them.

Rao, certified by the Frank Hoffmann Institute in Germany, has so far trained two batches of students, with the third batch beginning this month.

Screening for early signs of breast cancer

Ayesha and Noor were enrolled at the Jyoti Seva Residential School for the Blind in Bengaluru when they were very young. After finishing their undergraduate studies, they did a computer literacy course from Mitr Jyoti.

During the course, they came to know about the introduction of the MTE course by EnAble India. They applied and began training at the end of 2019.

However, due to the pandemic, they were able to complete the course only by end of 2022, after which they joined Cytecare Hospital as interns. Here they practised screening on staff, accompanied doctors to the OT, and understood the difference between benign and cancerous lumps in a hospital setting. Both of them now work full-time for the hospital.

Breaking down the screening process, Ayesha says, “First, we greet the patient and ask her questions about family history, past surgeries, and medical history, and fill in the patient history form on our computers. We also explain in detail how the investigation is done and encourage them to ask us any questions to allay their doubts,” she explains.

In the examination room, after the patient removes her upper garment, she is asked to remain in a sitting position. The MTE then examines her breasts for any skin changes, lymph node swelling on the neck and collar bones, and checks symmetry of breast contour and temperature of the breast skin.

“Next, the patient is asked to lie down on the bed. We apply five tactile braille tapes called DOCOS on different areas of the breast. We carry out a palpatory examination on both breast areas and its surrounding chest area anteriorly, bordering from the collar bone down to the end of the breast fold and laterally or sideways on the left and right sides of the breasts. We use two fingers (index and middle finger) in a rotating motion,” she adds.

This examination helps the MTE to check for tumours, if any, its size, and shape, and all the findings are documented and sent to the doctor for analysis, and if needed, for diagnostic tests.

Noor reiterates that throughout the screening process, which lasts 35-40 minutes, the MTE makes sure the patient is relaxed and comfortable.

“We keep asking them if they are okay and try to bond with them by making small talk so that they are not nervous during the process. Being blind, we cannot see them naked; and this also makes them more receptive to the idea of screening,” she says.

Impacting communities

Dr Poovamma CU, senior breast oncologist at Cytecare, says she had not heard of Discovering Hands until the girls started interning at the hospital.

“During their internship, I showed them how to differentiate between normal and abnormal lumps. They are very methodical because their tactile sense is a lot more appreciable compared to us, because of the loss of one sense,” she says.

Dr Jayanti Thumsi, surgical oncologist at Apollo Hospital, Bengaluru, says she was impressed with the MTEs’ knowledge of the subject, and says the curiosity and interest they show is unmatched.

“They are trained to detect lumps and abnormalities in the breast early on. When they go out into communities, they are equipped with all the information and knowledge to answer all questions.”

However, this screening does not replace the triple assessment for breast cancer–a clinical breast examination by a breast surgeon, mammogram/sonomammography/MRI, and a biopsy, which is still the ethical standard.

Dr Poovamma says it is beneficial because the concept of preventive health checkups, like a screening mammogram above the age of 40 is still not taken seriously by women.

“In India we see a lot of stage three and four breast cancers. While women in urban areas may have access to tertiary care evaluation, they still hesitate to go for a screening. Those in rural areas may not even be aware of it. When the girls go into these communities, they are playing a huge role in creating awareness about breast cancer, because they talk to the women as they are examining them,” she says.

“Also, most doctors are busy to attend screening camps regularly. This is an amazing solution and a win-win situation where women in rural areas are screened and these girls are also employed meaningfully,” adds Dr Jayanti.

An early detection of breast cancer can ensure timely treatment and increase the patient's chances of survival.

The road ahead

Sarangi says women are chosen for the MTE course from a pool of candidates from different sources–interest comes from WhatsApp groups, its own platform, EnAble Vaani, and from partner organisations.

After an internal assessment to check for eligibility, the candidates are filtered and enrolled into the course.

While there is acceptance from the doctors and the medical fraternity, corporate organisations, and the Indian Cancer Association, Sarangi believes the mindset towards breast cancer screening must change.

“Right now, a lot of people are coming forward and that’s a good sign. We are looking at how we can make it happen through Public Health Centres (PHCs), in local clinics and hospitals in rural areas.”

“Recently, we conducted a screening camp for 22 staff in KSIT Engineering College in Bengaluru. We are also organising camps in Hassan district, and recently also screened women with intellectual disabilities,” says Ashwini.

Noor and Ayesha have also travelled to Hoskote and Madanapalli in Karnataka to participate in screening camps.

“By creating awareness, we are trying to bring in women with any kind of abnormality in the breast quickly to the hospital. This will make a huge difference because most women tend to neglect their health,” says Dr Poovamma.

The girls are thankful for being part of a profession where they can help others and raise awareness about early detection of breast cancer.

“Being a MTE has taught me to control my emotions and given me confidence to face challenges,” says Noor.

“The travel for medical camps has exposed me to different kinds of situations. It has instilled a sense of confidence and empathy,” says Ayesha.

(The story has been updated with some additional information)