Turning Cancer into a Collective Purpose
I am a two-time cancer survivor, an above-knee amputee, and the President of Sachin Sarcoma Society (SSS), a patient-led support group for individuals and families affected by sarcoma, desmoid tumors, and GIST. I was once a schoolteacher who has an experience of teaching mathematics for 12 years in different schools in New Delhi , but cancer happened to me and it has reshaped my life and gave it a new purpose: to ensure that no patient fighting a rare cancer ever feels alone.
My journey with cancer began in 2012, when I was diagnosed with a molar pregnancy. I underwent six cycles of chemotherapy from AIIMS New Delhi. I faced lot of fear, physical exhaustion, and emotional uncertainty at that time. When the treatment ended, I believed the storm had passed and life would return to normal.
But in 2016, cancer returned—this time, synovial sarcoma, a rare and aggressive cancer in my right knee. I underwent limb salvage surgery and arthrodesis, followed by chemotherapy and radiation. Thanks to timely intervention and expert medical care, I was able to walk again and live an active life for several years. Yet, every step carried a reminder of the battle I had fought – and of the many battles others were still fighting silently as cancer affects one physically, mentally and emotionally. It affects body, mind and soul.
My own journey reinforced a vital lesson I now share with every patient and caregiver I meet: many cancers can be effectively treated—and lives can be saved—when detected early. Cancer is curable only if detected at an early stage. One must understand that if there is any unusual symptom in the body, persistent pain, unexplained swelling, notice any lumps or bumps in the body or symptoms that do not resolve should never be ignored. Our bodies often send warning signals; we must learn to listen and seek timely medical advice.
In 2023, my implant failed, forcing me to make a difficult choice: save the limb or save my life. I chose life. I underwent an above-knee amputation. What many saw as an end became, for me, a beginning. I lost a leg, but I gained clarity, compassion, and a deeper calling. I feel grateful about the fact that I am alive. I feel grateful to all my treating doctors for saving my life and my husband and children who have supported me in my thick and thin.
Cancer did not just alter my body—it transformed my perspective. It taught me gratitude, resilience, and the power of service. I stopped asking, “Why me?” and started asking, “How can I help and make difference in the lives of others?”
That question led to action.
In 2018, I co-founded the Sarcoma Support Group under Sachin Sarcoma Society along with my co-founder Lakshay Nagpal who also is a sarcoma survivor and Dr. Sameer Rastogi, Additional Professor at AIIMS, Delhi. Our mission was to spread awareness about rare cancers sarcoma, desmoid tumors and GIST and build companionship with their affected families. We wanted to support patients affected by rare cancers that are often misunderstood, misdiagnosed, and overlooked. Our vision was to remove the fear of sarcoma.
Since then, SSS has supported over 9,000 patients across India and beyond—emotionally, financially, logistically, and medically and administratively. Our work goes far beyond awareness campaigns. Each week, our team counsels patients at sarcoma outpatient departments (OPDs), helping them understand diagnoses, treatments, and side effects by giving them information sheets written in simple language. We emotionally counsel patients and connect them with the right sarcoma specialist so that patients can reach on time and start taking treatment at the right time as this can help in improving the prognosis of the patient. We offer not just information, but reassurance—something every patient desperately needs.
During the COVID-19 pandemic, when isolation deepened patients’ fears, we began weekly online support group meetings. These sessions continue today, creating safe spaces where patients and caregivers can share experiences, learn from experts, and feel heard. Often, healing begins simply by knowing that someone understands.
We also assist patients administratively and logistically by helping them with hospital navigation, doctor referrals, and affordable accommodation near treatment centers—critical support for families traveling long distances. Through Project Efficiency, we redistribute unused but safe cancer medicines to underprivileged patients, easing financial distress. Our RAAHAT initiative provides refreshments to patients waiting long hours in hospital queues, and Project ROZGAR helps survivors rebuild their lives through dignified employment.
One of the most powerful tools we’ve created is our network of patient WhatsApp support groups—safe, moderated spaces connecting patients across states and countries. These groups function as lifelines, offering round-the-clock emotional support and practical guidance. In these groups, patients interact with each other, share their own journeys , help and support each other during their treatment and build a strong sense of companionship with each other. This helps them to relieve their stress and anxiety.
On World Cancer Day, it is important to remember that cancer care does not end with surgery or chemotherapy. Patients need honesty, emotional support, and community. Rare cancers like sarcoma demand greater awareness, early diagnosis, and specialised care—but they also demand compassion.
Today, I no longer see myself as a victim of cancer. I see myself as a messenger—someone who has walked the path and now walks beside others. Cancer taught me that life is unpredictable, fragile, and precious. It has taught me to be in celebration with my life. It has changed my approach towards looking at things. It has taught me to be grateful in all the circumstances, made me more empathetic and compassionate as a person, and I truly believe that service to humanity is service to God.
My Message to Cancer Patients on World Cancer Day
It is important to listen to your body. If one faces persistent pain, unusual swelling, lump or bump in the body, or symptoms that do not go away deserve attention. Early medical consultation can make a significant difference.
It is important to ask questions from an expert oncologist. Seek clarity. Take second opinions from expert oncologists when needed. You have every right to understand your diagnosis and treatment.
Remember that cancer is not just a physical illness—it affects the mind and soul just as deeply. Emotional support matters. Reach out to other patients who are similarly fighting their disease. Connect with others, talk to them, learn from their experiences and coping mechanisms, as this can help one to relieve from his stress and anxiety that happens during the treatment . You do not have to fight alone.
Finally, hold on to hope. Always keep hope and faith alive and take life as one day at a time. Always remember that nothing lasts for ever, not even our troubles. This is a tough phase and it will pass. Always believe that better days are coming. Positive mindset, doing yoga, practicing positive affirmations and visualisation, trust in the treating doctor can help one to bounce back in life. Treatment paths may be difficult and outcomes uncertain, but purpose can still emerge from pain. Life after cancer—though different—can still be meaningful, fulfilling, and impactful. After the treatment of cancer is completed, one must remain on follow ups with their treating doctors.
My message is simple:
Cancer patients don’t just need treatment. They need trust, truth, and togetherness. They need support from their family and support from community who can support them unconditionally during their treatment.
Healing often begins when someone says,
“I see you. I hear you. I’m with you.”
About the Author
Rashi Kapoor is a two-time cancer survivor and President of Sachin Sarcoma Society, a patient-led organisation supporting individuals affected by sarcoma, desmoid tumors, and GIST.
LinkedIn: https://www.linkedin.com/in/rashi-kapoor-11974b92
