Breast Cancer: How Blind People Improve Early Detection

She can feel even the smallest tissue changes

Meryem Kara is sitting in her examination room at a GP practice in St. Georgen im Schwarzwald. She has headphones in, connected to her laptop. Next to the computer, there is a template of a female torso and a necklace with balls of different sizes.

She is one of 60 so-called Medical-Tactile Examiners (MTU) from the social enterprise “discovering hands.” The women are blind or have severely limited vision, and can feel even tiny lumps, just three millimetres in size, in women’s breast tissue — but also in men, who are less frequently affected.

The ball necklace beside Meryem Kara’s laptop shows the different felt sizes: “The smallest balls here are three, six, and eight millimetres, which I can already feel. The two larger ones are one and a half and one centimetres, which the gynaecologist or obstetrician can feel,” explains Meryem Kara. “The largest, at two and a half centimetres, can be felt by a woman herself.”

Timing in the cycle plays a role

Through the headphones, she can conduct a detailed history. The voice-over programme, a reading function for people with visual impairments, tells her the points she discusses with the patient. It includes many questions about age, height, family history, bra size, medications, menopause, and cycle: “This helps me build a picture of the patient, assess possible side effects of medications, and determine at which stage of the cycle she is.”

The best time for the examination is about ten days before the next period. “Menstruation can influence both the texture and sensitivity of the breasts, so it’s something to watch out for,” explains the MTU.

Coordinate system for orientation

Meryem Kara now picks up the template from her desk. It shows the female torso. Five white-red strips are attached: “One from the armpits down along the breast, in the middle from the neck between the breasts, and down both nipples — it’s almost like a coordinate system.” The white and red areas each have different surface coatings, allowing MTUs to feel the differences.

How long a tactile examination takes actually depends on the size of the breasts. “I feel them in three depths along the coordinate system: under the skin, then the central tissue, and down to the chest muscle,” visualises Meryem Kara her procedure. “And I do this centimeter by centimeter, so I don’t miss any spots.”

“I was a bit out of the loop”

Before training to become an MTU, Meryem Kara trained as a woven crafts designer. “I made rattan furniture and woven items. I was very good at it because my keen sense of touch also benefited me here,” she explains. However, she often suffered from tendinitis. After her first pregnancy, she decided to give up the profession altogether.

“When my second child started kindergarten, I realised I was a bit out of the loop.” Due to her visual impairment, Meryem Kara didn’t own a mobile phone or computer at the time and couldn’t use them. “I was not socially connected at all.”

She sought help, received screen-reading software for her smartphone, and basic training in assistive technology for the blind (BTG). “During about a year and a half, I learned how to operate a mobile phone and a computer and work with them.”

During her job search, she came across the MTU training with discovering hands.

The Training to Become an MTU

A training to become an MTU lasts nine months. During this time, women learn the fundamentals of the examination method called “Tactileography” and also gain practical experience in breast cancer centres.

Not only does an acuity in touch give a significant advantage over gynecologists, but also their specialised training, explains Dr. Stephanie Eder, a specialist in women’s health in Gräfeling near Munich: “We gynecologists rarely receive training in this area.”

“But time also plays a role: MTU specialists have much more time — they spend between half an hour and an hour on the examination. Unfortunately, preventive care with us is quite a brief affair,” admits the expert.

As a result, medically tactile examiners discover 30 percent more tissue changes than medical specialists — and at a much earlier stage: the noteworthy findings are only half the size at that point.

Patients Travel Great Distances

Like many MTUs, Meryem Kara offers her examinations across several GP practices: on Mondays, she works in a practice in Herrenberg in Swabia, and on Wednesdays, in St. Georgen in the Black Forest. “I would love to work even more, but so far, there haven’t been any requests.”

However, she already covers a significant area. “I’m the only one here nearby,” says the 43-year-old. Her patients come from all over — Karlsruhe, Stuttgart, Offenburg, Freiburg, and even from Switzerland.

Anyone wanting to be examined by an MTU specialist does not need to be a patient in a practice. Information on where tactileography is offered can be found on this website: https://www.discovering-hands.de/

80 Percent of Findings Are Benign

Many of her patients come to her annually for screening: “I am glad that, despite such an exceptional situation, women feel comfortable with me and keep returning.”

Staying calm and not letting anything show is one of the most difficult aspects of her job for the 43-year-old. “I must not show any discomfort during the examination because the patient must stay completely relaxed so as not to distort the result,” she explains.

This is especially hard when she detects changes that feel somewhat malignant. “That’s not easy and can sometimes be very stressful. But I have to remain calm for the woman, because I don’t want to cause panic.”

If a finding is identified, the tissue change is carefully documented and handed over to the respective gynaecologist — who can then initiate further tests and make a diagnosis.

“80 percent of the findings are benign growths,” Meryem Kara notes. “But I have also had younger patients where I found a lot of malignant tissue; such cases are very close to my heart.”

More Than 40 Public Insurance Companies Cover the Costs

However, tactileography cannot replace gynaecological screening or imaging procedures like mammography; this is pointed out by expert Dr. Eder. It should be regarded as an additional examination.

“There are things that the finger cannot feel. For example, microcalcifications, which can hide malignant cells — these can only be seen with mammography,” Eder states.

Especially for younger women, for whom mammography is not yet recommended, tactileography is an ideal option. It is already covered by more than 40 statutory health insurances. Patients paying out of pocket can expect a fee of around 79 euros.

Even those who undergo annual examinations should regularly perform self-examinations — both Dr. Eder and Meryem Kara recommend this — at any age. There is also the possibility to learn tactile self-examination (ATS) from an MTU to make at-home checks easier.

Instructions on how to correctly examine your breasts yourself can be found in our guide: How to Perform a Breast Self-Examination.

And the Men?

“Women are still the only ones who have taken the step,” says Meryem Kara. She emphasizes that she hopes this will change.

“During my training, I spent two weeks at the breast centre in Tübingen, where many men with breast cancer were being treated,” she recalls. “One patient was already severely affected because he hadn’t taken it seriously early enough. He believed only women could get breast cancer.”

However, mainly men with a higher body mass index (BMI) are at risk, as a large amount of fatty tissue in the breast increases the likelihood of this cancer type, adds Meryem Kara.

The earlier abnormal tissue changes are detected, the better. The specialist regrets that early detection for men is not yet widely established. Many women also fear examinations.

“I always try to encourage my patients,” she says.

Meryem Kara closes her laptop. “I try to make the examination easier for women with my relaxed and empathetic manner, to ease their fears, and to send them home feeling good.”

In the UAE

The pioneering efforts of tactile examination specialists, as exemplified by Meryem Kara’s work, serve as an important reminder of the value of innovation and inclusivity in healthcare. In the UAE, with its rapidly advancing medical sector and commitment to improving public health, implementing similar early detection methods could greatly enhance breast cancer screening, especially among underserved populations. Promoting awareness, investing in specialised training, and ensuring equitable access to preventive care can help the UAE continue its progress towards a healthier society. Embracing diverse approaches to early diagnosis will be crucial in reducing cancer mortality rates and supporting the wellbeing of all its residents.