Blind women in India help doctors detect early stage breast cancer

Loss of one sense has heightened others that can help detect cancer, lesions and other abnormalities

Breast cancer awareness is alarmingly low in India due to lack of education and guidance, rigid sociocultural norms, and delayed screening that leads to late detection and higher mortality.

Noorunnisa was three years old when a high fever left her completely blind. She had always longed to be a doctor, but her blindness robbed her of the opportunity.

But the 28-year-old, who uses only her first name, is now fulfilling her dream of becoming a medical practitioner – albeit in an untraditional way.

She is one of India's 18 certified Medical Tactile Examiners (MTEs) – all visually impaired – who have been trained to screen for lumps, cysts or other abnormalities in breasts using their sense of touch, and to help raise awareness about breast cancer in India.

“I feel fantastic because this job is saving the lives of people,” Noorunnisa told The National.

While breast cancer is the most common form of the disease globally, it ranks fourth in terms of deaths worldwide but first in India, according to data published by the Global Cancer Observatory in 2020.

Breast cancer has surpassed cervical cancer, the most prevalent carcinogenic disease in India with a staggering 50 per cent increase in cases between 1965 and 1985, according to the National Library of Medicine.

Globocan reported that there were 178,361 cases and 90,408 deaths from breast cancer in India in 2020.

A report by India's National Cancer Registry Programme, also released in 2020, said the number of cases was expected to rise to more than 230,000 in 2025.

Yet awareness of the disease is alarmingly low due to lack of education and guidance, rigid sociocultural norms, and delayed screening that leads to late detection and higher mortality.

Discovering Hands

To bridge this gap, the charity Enable India started training women with impaired vision under the Discovering Hands programme in 2019 to detect early stages of cancer or other abnormalities through palpation – the use of touch with hands and fingers in medical diagnosis.

Discovering Hands was first launched in 2011 by German gynaecologist Frank Hoffmann, who offers early breast cancer screening to his patients in his clinic in Duisburg in western Germany.

It was brought to India by the National Association of the Blind India Centre for Blind Women and Disability Studies, a Delhi-based non-profit vocational training programme, in 2017.

Ashwini Rao, an MTE trainer at Enable India, said that the organisation started training the women for the programme in 2019.

The nine-month-long course, which includes breast anatomy and physiology, the study of cancers and palpation techniques to detect early stages of cancer or other abnormalities, concludes with an internship at the hospital before the trainees are awarded the MTE certificate.

The women also get basic computer and English communication skills.

“They work under a breast oncologist to get practical experience for three months and once it is done, they have to take a practical exam where Dr Hoffman’s committee conducts the exam,” said Ms Rao, who was trained in Germany.

“We have finished two batches, from the first batch, we have four MTEs and from the second batch we have four MTEs. Our MTEs have screened over 1,000 women and covered Karnataka and neighbouring Andhra Pradesh region including rural areas where scanning machines are not available.”

Noorunnissa and her colleagues are based in Bangalore city in the southern state of Karnataka and are associated with Cytecare, a cancer hospital.

They conduct regular tactile breast examinations at hospitals, workplaces and universities and organise special camps in villages to reach vulnerable populations.

Each examination takes about 40 minutes during which five purpose-built Braille-marked documentation tapes are pasted on a woman’s chest to divide it into four zones for orientation. The MTE then palpates every centimetre to check for any abnormalities.

The MTEs document their findings and report them to Dr Poovamma, senior consultant and director of breast oncology at Cytecare Hospital, who evaluates each report and makes a call on whether the patient needs further assessment such as mammography or ultrasound examination.

“Because of loss of one sense, other senses are heightened and that is an advantage for clinical breast exams. The gold standard test for cancer remains a mammogram but, in our country, a lot of women get detected with breast cancer at an advanced stage with palpable lesions,” said Dr Poovamma, who uses only her first name.

“The reason is that the women are shy or uncomfortable to examine for changes so MTEs have a bigger role to play in a community set-up.

“We allow the MTEs to learn clinically what is abnormal so they may not differentiate whether it is cancer or not, but they know the abnormalities and encourage the women [to seek] further evaluation.”

Dr Poovamma said that the MTEs have been able to detect lesions and benign lumps and referred these patients for further examination by a doctor, but luckily none of them proved to be cancer.

The availability of the visually impaired MTEs has encouraged women to come forward for examinations.

“Earlier the women were not very comfortable, and they would ask how I would conduct the tests. Some would also be curious to see us examining them, but they are more welcoming and accepting now,” Ayesha Bano, 24, an MTE who was born visually challenged, told The National.

“I feel good that I can encourage and create awareness and I hope that this can become a norm in other parts of the country.”