“Shhhh….. Let’s not discuss,” writes Dr. Lopamudra Das Roy

August 5: What is the true scenario in India with Breast Cancer? The incidence of Breast Cancer in India is alarmingly increasing both in younger & older women, unfortunately, the death rate is very high compared to other parts of the world due to lack of awareness and early detection. Women are so busy balancing work & family that their own health takes a back seat & becomes last priority. Women & family members even hesitate to mention the word cancer in “Breast”. It’s the shyness & embarrassment society imposes. Do moms, aunts, daughters of our society openly talk about breast with parents, family members or friends? During the India Breast Cancer awareness Camps/outreaches, in 2018 and 2019, in both urban and rural sectors, when I interviewed many survivors or “patients with Stage 4 Breast Cancer”, in their interviews – they confessed that they did not know a painless or painful lump or breast abnormalities or discharges could be cancer! Besides “SHYNESS”, the other major player for late detection is “IGNORANCE” – No one discusses about issues with Breast since uttering the word Breast is Taboo & awkwardness.

Few eye-opening glimpses from my outreaches that tells us- irrespective of education or socio -economic
condition, situation is extremely grim and this is just the tip of the iceberg- we have a lot to do to help our community.

Bhorakhai village, Southern Assam, post-session – an eighteen- year-old girl was in tears & she asked me, “Why didn’t you come last year to our village? My mother died few days back & she was not aware that a lump could be cancer & was also shy to speak to anyone”.

Kabura, Assam – a woman comes up to me who is an Angandwadi worker & tells me to check the breast of her 22 year old daughter. She had a pretty big lump hard like marble. My immediate question was why she didn’t visit doctor yet? The response- “Six months back, we went to Silchar Medical College, but a male doctor touched her breast, told us that we need go back for more testing. She didn’t want a male doctor to touch her again, so never went back, but we realize now after you showed that lump may be cancer and will go to the doctor immediately”. This is the most common reality that I faced from many women. Wish the doctor had told her that this might be cancer & definitely needs to undergo further diagnostic screening- that might have changed her mind to understand the seriousness of the situation and she wouldn’t have delayed for 6 months.

Mumbai- I met a Stage 4 educated Breast Cancer advocate – When I asked, “why so late?” Her response was – “I was shy to talk about it & I did not know a lump could be cancer”. Just imagine, if this is the situation in Mumbai, what would be the scenario in other remote places in India?

Mansar, Nagpur, an educated woman told me, it took her six months to disclose to her husband about her lump that turned out to be Cancer.

Patiala, Punjab: A Professor’s mom was recently diagnosed with Breast Cancer. Apparently, his mom discussed with his dad last year (2018) but his father was reluctant to understand the importance of the condition and absolutely ignored. Many more cases like this came forward after the sessions – families feeling helpless with guilt for ignoring the situation due to lack of knowledge.

Dr. Borkakoti from Indian Council of Medical Research (ICMR), mentioned – “My mom was shy to tell me, though she is highly educated and I am her son who is a doctor”. We capture real-time interviews to understand the actual scenario In India- please visit- https://www.breastcancerhub.org/videos.

I met doctors, researchers in Tamil Nadu, Guwahati, Hyderabad, Bengaluru, Kerala, Punjab, Assam, Meghalaya, telling me stories of how their colleagues died of Breast Cancer due to late detection. Dalu tea garden, During 2019, many deaths due to Breast Cancer & after the session, through our screening, we detected ~8-9 women with lump or discharges.

During outreaches in schools, colleges, universities, so many girls & boys told me about their family members, being lost with Breast Cancer but they never faced the courage to discuss with anyone thinking it’s not proper to mention “Breast” Cancer. The outreach sessions opened their eyes and they started to respect the lives they lost by discussing the stories.

In a remote village, I went to see a Breast Cancer stage 4 patient – she was lying on the floor – when asked, the family said “Cancer will spread from her to the members” … half of the population still think that Cancer in contagious. During my sessions on Palliative care, many survivors/patients come forward “You are talking about villages? The scenario is the same even in cities. I faced the same discomfort & isolation when I was diagnosed with Cancer. Many people started to avoid me when they got to know.”

These are not even 1% of all the stories and incidences I hear & face during the outreaches in urban & rural India. India is coming forward & change is happening in many places but that’s just 5% of the population in India. The word Cancer itself is still considered a taboo & Cancer in Breast? That’s not to mention…

WHAT SOLUTION CAN WE GIVE DURING OUR OUTREACHES AND HOW CAN WE HELP WITH EARLY
DETECTION?

In India, during the camps, if I request women to go for Mammogram after age 40, it’s the inertia and mindset, only 1% women will go and 99% will think – my family doesn’t have Breast cancer, why do I worry? In addition, huge population of India is stricken by poverty, & if I request them to take one day off from their daily wage work & go to the nearby hospital to do either free screening mammogram or spend money from their pocket to do the same, this will never work. In addition, women are not aware that mammograms can miss tumors due to dense breast issues. Therefore, the best screening method that covers all aspects is Breast Self Exam (BSE). We produced BSE cards in 11 Indian languages – Assamese, Bengali, Gujarati, Hindi, Kannada, Odia, Malayalam, Marathi, Tamil, Telugu, Urdu in addition to Bahasa, German, Portuguese, Spanish, with our wonderful collaborators. https://www.breastcancerhub.org/news-2/self-breast-exam-card.

The oncologists in India also advocate for BSE as stated during the real-time interviews: https://www.breastcancerhub.org/testimonials.

Impact & Success: Population outreach is working wonders…We distribute free BSE cards in the local languages & the authentic easy steps’ protocol is not only wholeheartedly accepted by urban & rural sectors but women & men are also taking more for their network & extended families. They are coming forward to learn how to perform BSE & requesting for online download link to be shared through their social media. Women promise us that any abnormalities faced, they will visit doctors for further investigation. We also always request to do screening mammogram/ ultrasound in addition to BSE. Clinical Breast exam for screening process is again a huge taboo that we are helping people to overcome & check with their doctor.

What we do to make an impact during sessions/camps – Early detection is the key to survival. Our inspiring Cancer survivor stories help others to come out of the stigma & speak up. Our tribute to Late Mrs. Lotika Das & Late Mrs. Chanaki Chivukula during the outreaches becomes eye-opener & helps to understand the importance of the situation & why we are trying so hard to spread the word. We are grateful to the advocates & their families to give us the permission to share the stories that is making huge impact. Please learn more about the inspiring interviews in local languages of our Survivors – helping to break the taboo https://www.breastcancerhub.org/our-heroes.

We educate about Early detection, Breat Cancer in Men, Dense Breast issues with Mammogram, Lifestyle (stress & diet), Risk factors, Genetics,Inflammation & cancer & provide early screening options, solutions & channelize potential underprivileged patients towards affordable healthcare services, treatment options and resources. We conduct Real time interviews to depict and unravel the truth on embarrassment & taboo prevailing across the society, even today! We are sincerely thankful to our network and collaborators, and with their tremendous support, we conducted more than 140 outreaches in India (2018, 2019), covering cities, towns, villages, tea-gardens, hospitals, colleges, universities, research Centers in urban and rural sectors. Outreaches in – Mumbai; Hyderabad, Bengaluru; Bilwaradahalli, Mahbubnagar, Trivandrum, Calicut, Mannarkkad, Chennai,
Cuddalore, Kolkata; Mansar (Nagpur), Delhi, Jalandhar, Patiala, Agartala, Haflong, Dharmanagar (Tripura);
Shillong (Meghalaya); Assam – Guwahati, Nagaon, Bhorakhai, Bantarapur, Sonapur, Dibrugarh, Duliajan,
Digboi, Tinsukia, Amguri (Sivasagar), Kabuganj, Kabura, Silchar, Udharband, Hailakandi, Karimganj, Tupkhana,
Nazarband, Tea-estates (Kumbha, Devipore, Rampur, Dalu).

Our biggest satisfaction: Since the inception of BCH & by executing our mission, we have helped save
more than ~5000 lives by helping them to be detected early, analyzing the reports, connecting the suspicious
cases towards the healthcare navigators & making sure that no one goes undetected. We have followed up
with patients as I communicate via email, phone or WhatsApp.

Also Read: Cancer and Inflammation- Role of Diet, writes Dr. Lopamudra Das Roy

**Dr. Lopamudra Das Roy (M.Sc, Ph.D, MBA) is the Founder and President, Breast Cancer Hub. Original Article -© 2020 Breast Cancer Hub, All Rights Reserved.