“Shhh.. let’s not discuss” Silent ignored chapter

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“Shhh.. let’s not discuss”
Silent ignored chapter
 
By
Dr Lopamudra Das Roy
Overview of my India Outreaches - 2018 & 2019
Founder, Breast Cancer Hub

 
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 the developed 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.
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. The word Cancer itself is still considered a taboo & Cancer in Breast? That’s not to mention…
Bhorakhai village, Southern Assam, post-session, 2019 – an eighteen-year-old girl was in tears & she asked me, “Why didn’t you come last year to my 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 to 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 mentioned that lump may be cancer, so we 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.
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.
Dr. Borkakoti from Indian Council of Medical Research (ICMR), Dibrugarh, mentioned – “My mom was shy to tell me, though she is educated and I am her son who is a doctor”. We capture real-time interviews to understand the actual scenario.  Please visit Dr. Borkakoti's interview: https://youtu.be/RribSQ2-T2E
More interviews: https://www.youtube.com/channel/UCZvTfrE-8pYTKGVPlllC0Yg/videos
  • 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?
  • 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 & 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.
Kolkata, RN Tagore Hospital: A nurse told me, many times,  they don't announce beforehand that they are organizing a camp on CANCER awareness, people fear the word so much, they avoid coming. 

Mahbubnagar, State of Telangana: After the session, a couple comes to me in tears - their mother got detected with Breast Cancer 6 months back, and doctor advised surgery & further treatment.  The family was told by friends & neighbors,   Cancer means, end of Life, so what is the purpose of going over the treatments at this age - 60 years? I could see the repentance on the son's face because now they knew - Cancer can be cured & he was wondering if six month delay is already late. I would say - it is never too late, we need to fight back as a family with a strong support system through the concept of Palliative care!

Dalu tea garden, This year, 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 appropriate to mention “Breast” Cancer. The outreach sessions opened their eyes and they started to respect the lives they lost by discussing the stories
ISOLATION: 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."
I met doctors, researchers, students from various educational institutes  post-sessions, telling me stories of how their colleagues, moms of their friends,  acquaintances, died of Breast Cancer due to late detection. One of the examples, NIT Jalandhar, Punjab, where I heard similar story.
Interview with Professor Sarbani Giri, Department of Life Science & Bioinformatics, Assam University, bringing in very significant specifics on this critical situation. Dr. Giri speaks from her own experiences about the current dreadful scenario of Breast Cancer in India - even today society is hesitant to speak up!
More interviews, please visit: https://www.youtube.com/channel/UCZvTfrE-8pYTKGVPlllC0Yg/videos
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 10 Indian languages – Assamese, Bengali, Hindi, Kannada, Odia, Malayalam, Marathi, Tamil, Telugu, Urdu (Gujarati in progress) in addition to English, Bahasa, German, Portuguese, Spanish, for Breast Cancer in Female & Male,  with our wonderful collaborators (Male Breast Cancer Coalition & Sarah Cannon Cancer Institute). Please download the card of your language from the link below:
https://www.breastcancerhub.org/news-2/self-breast-exam-card
Impact & Success
Population outreach is working wondersWe 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.
Pictures below: Glimpses of acceptance of Breast Self Exam Cards in Local Languages & women & men coming forward to DISCUSS
a) Guwahati- Reading & Accepting the BSE cards in ASSAMESE
b) Hyderabad- Women coming forward for BSE cards in TELUGU, URDU, HINDI
c) Cuddalore , Tamil Nadu-Women & Men trying to learn perform BSE
d) Post all sessions, we open up & discuss further about screening processes & issues with Brea
st- #BreakTheBreastTaboo
Testimonials from Oncologists in India emphasizing the need of Breast Self Exam..

Interview with Dr. K Govind Babu, HCG Cancer Hospital, Bengaluru, June 20, 2019 focusing on the need of breast self exam. More interviews on our website..

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 stories & interviews in local languages of our Survivors – helping to break the taboo https://www.breastcancerhub.org/our-heroes
In the photo:  Beloved BCH Advocate Pioneers - :
Richa Khandelwal, Evey Cormican, Christine Post... 
Inspiring advocates & the interviews in local languages remarkably helping us to break the silence associated with "Breast Cancer".
Interview with Mrs. Prabhavathi P.C in Malayalam
-Stage 3 Breast Cancer Survivor. So proud of Mrs. Prabhavathi, a teacher by profession, who shared her journey in Malayalam, summarized in English by Mrs. Usha Menon. Hats off to Mrs. Prabhavathi who fought the battle with courage, positive attitude, never gave up!
Please visit the links below for more amazing interviews/messages in English or the local languages - Assamese, Bengali, Hindi, Kannada, Marwari, Malayalam, Tamil, Telugu, helping to save lives!
https://www.youtube.com/channel/UCZvTfrE-8pYTKGVPlllC0Yg/videos
https://www.breastcancerhub.org/videos
We educate about Early detection, Breat Cancer in Men (In the photo - our Male Breast Cancer Coalition brothers), Dense Breast issues with Mammogram, Lifestyle (stress & diet), Other 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).
We reached out to more than 10,000 people during sessions & many more through social media, press & collaborators conducting sessions with BCH materials. In this process, we have helped save many lives by helping them to be detected early,  but this is just the beginning, we have a long way to go & we have to come together to win the battle against Cancer- #TogetherWeSaveLives
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Lopamudra Das Roy