RASHI, India

From Survivor to Supporter: My Journey and the Work of Sachin Sarcoma Society

By Rashi Kapoor

I am a two-time cancer survivor, an above-knee amputee, and the President of Sachin Sarcoma Society (SSS) — a support group formed for patients and caregivers affected by sarcoma, desmoid tumors, and GIST. I was once a schoolteacher, but life had other plans for me. Today, my life’s purpose is to support others walking the same painful path I once did.

In 2012, my world turned upside down when I was diagnosed with molar pregnancy (choriocarcinoma). I underwent six cycles of chemotherapy. It was a phase filled with fear, physical weakness, and emotional exhaustion. At the time, I believed this storm had passed, and life would go back to normal.

But just a few years later, in 2016, I was diagnosed with synovial sarcoma in my right knee — a rare and aggressive form of cancer. It shook me again, but I decided to fight. I underwent limb salvage surgery and arthrodesis, performed by Dr. Ashish Gulia and his team. Thanks to their expertise and care, I was able to walk again and lived well for the next seven years. I also underwent five cycles of chemotherapy and 30 sessions of radiation. It wasn’t easy, but I kept moving forward — physically and emotionally.

During those years, I had to navigate life with a partially fused leg. Every step was a reminder of my journey, but also of my strength. There were moments of frustration, pain, and isolation. But this journey deepened my empathy. I began to see life through a new lens — not as something to survive, but something to uplift others through.

In 2023, my implant failed. I was left with a critical choice — save the limb or save my life. I chose life. I underwent an above-knee amputation, once again in the care of Dr. Ashish Gulia and his compassionate team at Tata Memorial Hospital. That surgery was a turning point — not an end, but a new beginning.

I often say: I may have lost a leg, but I gained a purpose. Cancer didn’t just change my body — it transformed my spirit. It made me more compassionate, more grounded, and more committed to serving others. I began to live with an attitude of gratitude. Instead of asking “Why me?”, I started saying, “Thank you for giving me the strength to help others.”

I am especially grateful to my husband, Mr. Adhir Kapoor, who has stood beside me during the darkest and most uncertain moments of my life. I am also thankful to my father-in-law, Mr. Azad Kapoor, whose quiet strength and belief in me has meant the world. My children, Aarit and Rhea, have been my biggest source of courage and joy — their love gives me reason to fight harder every day. I also feel deeply blessed to have the constant prayers, care, and support of my parents, whose faith and blessings have been a pillar of strength in my journey.

I want to especially mention my Masi, Mrs. Bina Suri, who has stood by me like a rock. During my hospitalizations, she took care of me with the unconditional love of a mother. Her presence, patience, and quiet strength gave me immense comfort during some of my most vulnerable moments. I truly don’t know how I would have managed without her. Grateful to my mother, Mrs Veena Suri who kept praying for me and took care of my children when i was hospitalised. 

In 2018, with the blessings and support of Dr. Sameer Rastogi (AIIMS, Delhi), along with other survivors and caregivers, I co-founded the Sarcoma Support Group with support from my collegue Lakshay Nagpal under Sachin Sarcoma Society. Our goal was simple yet profound — no sarcoma patient should ever feel alone.

What began as a small initiative has grown into a full-fledged movement. Till now, we’ve reached and supported over 9,000 patients living with sarcoma, desmoid, and GIST — emotionally, financially, logistically, and medically.

Our mission is to spread awareness about sarcoma and build companionship with families affected by this rare and often overlooked cancer. I believe strongly that emotional healing and connection are as vital as medical treatment.

Each week, I and my team counsel over 100 patients at the Sarcoma OPD in AIIMS. We listen to their fears, answer their questions, and hand them simple, informative leaflets in Hindi and English  explaining treatment, side effects, and self-care. Many times, people walk in broken and overwhelmed, and leave with a little hope in their eyes. That gives me strength.

During the COVID-19 lockdown, we started weekly online support group meetings — and we haven’t stopped since. We have completed over 186 sessions where patients talk to each other, listen to experts, and feel seen and heard. The bonds formed in these groups are deeply healing.

We also provide administrative help by connecting patients with the right doctors and guiding them with hospital processes. For outstation patients, we help them find free or affordable places to stay near hospitals.

Through Project Efficiency, we collect unused or leftover medicines (carefully checking storage and expiry) and donate them to underprivileged patients. So far, this has benefited over 300 people, saving them nearly ₹25 lakhs in medicine costs.

With our RAAHAT campaign, we serve snacks and drinks to patients waiting for long hours in OPD lines. It might seem small, but for someone tired, hungry, and anxious — it’s a gesture that says, “We care.”

We’ve also launched Project ROZGAR to help sarcoma patients and survivors find jobs. So far, 13 have been employed with dignity, and we’re working on more. For many, cancer affects not just health, but livelihood — and this project restores hope and identity.

Every year, during Sarcoma Awareness Month, we run strong social media campaigns — sharing survivor stories, busting myths, and educating the public. Awareness can save lives. I truly believe that.

One of the biggest blessings has been our WhatsApp support groups. I personally manage over 40 groups based on cancer type, age, language, and location. These groups include patients from all over India and even from countries like Bangladesh, Nepal, Cameroon, UAE, USA, and Portugal. They are like extended families, offering 24/7 support, comfort, and courage.

After everything I’ve been through, I’ve found a new passion: emotional healing and motivational communication. I now create videos and content to help people not just fight illness — but also loneliness, anxiety, fear, and inner wounds. Through YouTube and social media, I speak from my heart — so that someone, somewhere, feels less alone.

Under my leadership, Sachin Sarcoma Society has received numerous national and international recognitions. We’ve presented research, co-authored global scientific posters, and received awards for innovation, patient support, and impactful communication. But the real reward is the smile of a patient who feels understood.

Today, I no longer feel like a victim of cancer — I feel like a messenger. I believe I went through all this for a reason — to become a voice for those who are afraid, to stand beside those who feel abandoned, and to show that even after losing a leg, one can still walk tall with purpose. I have started practicing gratitude more often and feel grateful to be alive. i have become more empathetic and compassionate as a person and my perspective towards life has changed. The entire journey has taught me that life is very unpredicatable so one must live life to the fullest.

My message is simple:

“Sarcoma patients don’t just need treatment. They need truth, trust, and togetherness.”

Healing begins when someone says, “I see you, I hear you, and I’m with you.”

And through my work, my story, and my soul — that’s exactly what I try to offer as I truely believe that service to humanity is service to God.

SSS website-www.sachinsarcomasociety.org

Helpline no- 7303827447