Women's Health: Founder of Breast Cancer Hub Dr Lopamudra Das Roy Shares Addresses the Five Common Misconceptions Every Person Should Know
“We need to strive together in our journey against breast cancer by coming out of the stigma, awkwardness, and taboo of using the word Breast and fight Breast Cancer with dignity!” Today’s woman dreamer, is the Founder and President of Breast Cancer Hub (BCH), a Guidestar Platinum Top-rated 501(c) nonprofit foundation educating global populations on breast cancer. Originally inspired by her father’s side of the family who was tirelessly serving patients in Assam India, and her mother’s side who were always helping their community, she has 22+ years of experience in Research, Teaching, and Mentoring undergraduate & Ph.D. candidates in the field of Genetics, and Cancer. A must read article - thank you Lopa for sharing your story!
1. Tell us your story. You are the Founder and President of Breast Cancer Hub (BCH), a Guidestar Platinum Top-rated 501(c) nonprofit foundation. You are a distinguished Cancer Scientist-Research Professor, and a Social Entrepreneur. Tell us what inspired your powerful work with breast cancer and helping others?
I was always motivated by my grandfather (Late Dr. K.N Das) and Father (Late Dr. Chandra Sekhar Das, an eminent pediatrician) tirelessly serving patients in Assam, North-East Part of India & my mother Mrs. Rita Das & my maternal grandparents who helped the community with their selfless gestures. I followed the path with a passion in the field of Cancer Research to find a cure and treatment modalities because growing up, in NE India, Cancer was a death sentence, and alarmingly increasing. I faced instances where we lost women to Breast Cancer, due to shyness, irrespective of education and socio-economic condition. Women were hesitant to discuss any concerns due to the stigma associated with the word “BREAST” and the culture-induced embarrassment. Women would go to the oncologists usually late when tumors are huge and metastasized to distant organs which becomes an incurable situation leading to a very high death rate in the Developing world.
In the USA, and other developed countries, I worked with Breast Cancer patients sharing their stories of pain and agony when mammograms failed their diagnosis due to dense breast issues. My heart sank when I saw young moms dying due to late detection.
Also, Breast cancer in men worldwide is increasing and most men with Breast Cancer seem to have experiences of shock and subsequent embarrassment, battling the “stigma” of having a predominantly woman’s disease. Similarly, the LGBTQ+ community is facing extreme challenges from the healthcare screening and treatment standpoint.
Therefore, over the years, being a Cancer Research Professor, though I was conducting all the high-end experiments with targeted cancer therapies in the lab, my heart kept questioning me, as it was equally important to target the fundamental challenges, which was never addressed, that could shift the paradigm of the healthcare system and save lives in the underserved or conservative sectors, who have no one to take care of them because lives were lost to Breast cancer and other Cancers in Women, Men, & LGBTQ+ due to taboo, ignorance, lack of awareness leading to late detection, inaccessibility to healthcare facilities, accurate diagnosis & treatment management. All these concerns stirred me to resign from my job in 2017 and create Breast Cancer Hub (BCH) as my Full-time pro bono humanitarian work, providing 100% Free services, with a dream to save lives by making impactful sustainable changes working at the grassroots level by bridging the gap between the Developed & the Developing Countries, with the Slogans #BreakTheCancerTaboo, #KnowYourBody #TogetherWeSaveLives, and #BreakTheBreastTaboo that brought huge criticism to me, in the conservative sectors, but I remained stern and undeterred.
2. What should every woman know about breast cancer? What are some misconceptions women often have, particularly in rural communities? And how can we better address them in our healthcare systems?
The incidence of Breast Cancer (BC) is alarmingly increasing worldwide. Unfortunately, the death rate is significantly higher in the Developing countries compared to the Developed world. We need to strive together in our journey against breast cancer by coming out of the stigma, awkwardness, and taboo of using the word Breast and fight Breast Cancer with dignity!
There are many misconceptions revolving around Breast Cancer. To address a few:
1) Breast Cancer is a woman’s disease: BC does not discriminate, Men get Breast Cancer too, and is prevalent in All Genders.
2) I don’t have a family history, so I won’t get Breast Cancer: Only 5–10% of all cancer cases occur due to inherited genetic mutations, the remaining 90–95% have their roots in the environment, lifestyle or can occur randomly.
3) Only middle-aged & older women get Breast Cancer: The young population affected by BC is significantly increasing.
4) All BC are the same: BC treatment is personalized based on different variables: grade, stage (0-4), receptor status, genetic mutations, to name a few.
5) Only rural communities need awareness: There is tremendous negligence in undergoing Breast Cancer Screening in both the urban & rural sectors in the developing world. The situation in the rural sector is grimmer, as food is the priority and not health for the villages stricken by poverty in addition to the inaccessibility to the hospitals. But the inertia within the urban society to speak about breast concerns due to the ingrained ideology of shyness about Breast health also takes precedence. In the USA, many communities delay early detection screening due to the inherent culture of not taking care of Breast health, leading to late detection and death. Therefore, it is a Global problem, and not confined to the rural sectors alone.
Breast Cancer, when detected early and treated accurately, is curable. Breast Cancer Screening is the key, which means looking for signs before a person has symptoms, helping to find cancer at an early stage, with better survival, which will bring a positive shift, but the healthcare system needs to provide avenues, to help patients who are uninsured or can’t afford treatment due to financial crisis, which will be the sustainable solution.
Breast Cancer Screening:
Breast Self-Exam (BSE): To start at the age of 17-18 years and understand the look and feel of your breast - any abnormalities, any discharges, any painless or painful lump - please immediately reach out to us or please contact your healthcare system. We generated BSE cards in 24 Languages for all genders. Please download, share, and save lives: https://www.breastcancerhub.org/news-2/self-breast-exam-card
Clinical breast exam, an examination of the breast by a doctor or nurse.
Mammogram screening after the age of 40. Mammograms may miss about half of cancers with dense breast, therefore, supplemental tests – 3D Mammogram/tomosynthesis, Breast ultrasound, Breast MRI/MBI, is needed as per your doctor’s guidance.
High-risk population, please check early.
3. 1 in 8 women can have BREAST CANCER in their lifetime and the incidence is alarmingly increasing worldwide. Tell us more about Breast Cancer Hub, and the work you are doing in addressing breast cancer?
Breast Cancer Hub (BCH) is a Global family standing against discrimination of color, language, culture, religion, and gender. We serve everyone with equality, providing Grassroots Sustainable Solutions (SAVER – Save Lives by Awareness, Volunteering, Education, and Research),
Our Mission focuses on BREAST CANCER in WOMEN, MEN & LGBTQ+ and supports ALL TYPES OF CANCER (BCH Wings – Cancer Hubs), unremittingly working on 1) Awareness and Education highlighting Early Detection & Prevention by providing resources in simple layman’s terms to empower everyone about the symptoms of Cancer, help detect early and treat accurately; 2) Research at grassroots helping change health care policies; 3) Community Outreaches - Saving innumerable lives - helping to be detected early, analyzing the reports, navigating suspicious cases towards healthcare facilities & affordable options as I share my contacts during Seminars/Webinars/Outreaches for community to reach out to me for help and support. 4) Screening Camps; 5) Patient Support Groups, Medical Guidance & Counseling: a) We provide patients with scientific analysis of their cancer diagnosis & treatment; b) BCH Support Groups serve as immense strength for patients and caregivers, as we have medical professionals and survivors in our support group, providing invaluable counseling & guidance, c) We publish stories & interviews of Cancer advocates in local languages to inspire others fighting Cancer; 6) Patient Care Packages: We create mastectomy or lumpectomy comfort pillows with a pocket that allows using a cold or hot pack as part of the healing. We make chemo hats and chemo port seat belt pillows, a gesture to show our Love for our BCH Cancer fighters, 7) Adopting Villages (BCH is the Pioneer) for door-to-door Cancer screening, diagnosis, treatment aid & management, palliative care, and counseling, and providing a holistic approach by serving villagers with Food relief during Covid and Flood in the BCH adopted villages. We monitor and manage each patient individually, case by case. 8) Financial Treatment Aid for the underprivileged populace in utmost need; and 9) Leadership Mentorship Programs to create Community Leaders, empowering the youth on Cancer screening, our torch bearers.
We differentiate and stand apart as a Cancer Organization by creating a unique model where all our services are 100% free of cost and all the donations, we receive from our kindhearted supporters are driven toward our mission. Every day is a challenge, but our work speaks volumes, as we have been accomplishing our goals by strategically improvising based on the circumstances and the need of the community, keeping the vision and mission intact, with our core values – Ethics, Integrity, and Transparency.
4. You are such an inspiration. How do you define success in your life? What motivates you?
I am truly humbled by your kind words, and sincerely grateful. I was at the epitome of my career graph, the success that any scientist aspires for, grants as Principal investigator, investigating targeted therapies and signaling pathways in cancer, with high impact factor publications. But, in parallel, from a personal life standpoint, life was rough, with seven miscarriages, and many health challenges, but finally, God bestowed me with two miracle babies in 2010 and 2011. Therefore, the pathway to building Breast Cancer Hub, by resigning from my career in 2017, where I knew commitments were beyond family, was like a calling. I received criticisms from society, that I need to think of my family rather than the community, questioning my responsibilities as a mother & wife because to execute sustainable ground changes in developing countries, I had to stay away from my young kids (6 & 7 years in 2017), traveling to the remote rural conservative sectors all on my own in public commutes risking my safety.
But, over the ~6 years, since the inception of BCH, saving lives each day of those Women, Men, and the LGBTQ+ community, especially the untapped populace, whose diagnosis would have been missed without our intervention due to taboo, ignorance, lack of awareness & education, inaccessibility to healthcare facilities, poor socio-economic condition, correct diagnosis, and treatment management, is success for me because I always believe, We Save a Life, We Save a Family! My motivation is my kids, Agastya & Agneya telling me, “Mamma…please go and save other moms, we are proud of you” … My motivation is the lives lost to Cancer due to late detection, making my fight stronger... My motivation is the immeasurable lives we are saving and helping each day due to our unwavering tireless grassroots work, and nothing can be more rewarding and inspiring, as we keep our efforts marching!
5. You are certainly a busy woman. How do you relax and unwind?
I love to dance and experiment with cooking but with the current expansion of BCH and patient commitments, 24 hours is falling short. But my relaxation is at home, with family, unwinding with Chai and homemade traditional sweets, and preparing my kids’ favorite cuisines.
Thank you Lopamudra for sharing your story with us! We are excited to have you in our global women’s network!
Bio: Dr Lopamudra Das Roy, Founder & President of Breast Cancer Hub (BCH), a Guidestar Platinum Certified, Top-rated 501 (C)(3) Nonprofit organization, registered in NC, USA, in 2017. She is a Cancer Research Professor, a Social Entrepreneur, who resigned from her rewarding career in 2017, to create & grow BCH as her Full-time pro bono, humanitarian work, providing 100% Free services, with a dream to save lives, by making impactful sustainable changes working at the grassroots level by bridging the gap Globally. Dr Das Roy has 22+ years of experience in Research, Teaching, and Mentoring undergraduate & Ph.D. candidates in the field of Genetics, and Cancer with her exceptional academic credentials, Ph.D. in Genetics (Molecular Biology) from Assam University, India, Post-doctoral fellowship from Mayo Clinic College of Medicine, MBA from Northwestern University-Kellogg School of Management. She served at the University of North Carolina at Charlotte (UNCC), USA, as a Research Professor, awarded grants as Principal Investigator from the Department of Defense (DOD) cancer research program & National Cancer Institute, investigating targeted therapies and signaling pathways in cancer. She is recognized as a Distinguished Cancer Scientist with high-impact factor publications, inventions, citations, press releases with global recognition from the American Association of Cancer Research, and press for breakthrough work on discovering the signaling pathway between Breast cancer metastasis and Arthritis. Dr. Das Roy is the recipient of many Global Awards, notable being “100 Global Women in Leadership”, “One of the five inspiring women around the world leading the fight against Breast Cancer”, “received USA President’s Lifetime Achievement Award for commitment to building a stronger nation through volunteer service”, “Global Role of Cancer Awareness Awards”, “Exemplary Social Worker & Humanitarian Awards”. Dr. Das Roy’s story was featured in Charlotte Lately Magazine as one of the 31 Influential Women in Charlotte, North Carolina. Her journey featured at International Network in New York City, Passion Piece, Podcasts as making a Global Impact, Wonder Women Series, featured at East India Cover Story as the savior of women with Breast Cancer, in addition to being awarded for Outstanding performance on relief and welfare activities in India during Covid-19 from Universal Diplomatic Affairs of Human Rights.