Sarcoma Survivor Helps 9,000 Patients Fight Rare Cancer

When diagnosed with synovial sarcoma in 2016, the patient heard the disease's name for the first time. Like most people facing this rare cancer, he felt isolated and struggled to find information or support.

Sarcoma affects bones and soft tissues like muscles, fat, nerves, and blood vessels. It can strike anyone at any age and includes around 200 subtypes, making it one of the most misunderstood cancers in India.

After completing treatment in 2017, the survivor partnered with Dr. Sameer Rastogi from AIIMS New Delhi to create a support group. That small circle grew into the Sachin Sarcoma Society in 2018, dedicated to spreading awareness and building community among affected families.

The society now serves over 9,000 sarcoma patients. Members guide newly diagnosed patients toward specialist care, help them navigate treatment options, and provide emotional support through every stage of their journey.

The challenges sarcoma patients face start early. Many receive misdiagnoses or see doctors unfamiliar with the disease, leading to inappropriate treatment that can result in unnecessary amputations or worse outcomes.

Young adults compare themselves to peers advancing in careers while they battle cancer. Young women worry about marriage and fertility after chemotherapy, while body image changes from hair loss and weight fluctuation lead many to withdraw socially.

Financial barriers add another layer of stress. Expensive surgeries, implants, and treatments at private hospitals drain savings, and some patients lose jobs after amputations, cutting off income when they need it most.

The Ripple Effect

Support groups like the Sachin Sarcoma Society prove that rarity doesn't mean neglect. When patients connect with others who understand their experience, the isolation lifts and hope returns.

The organization collaborates with doctors, hospitals, and policymakers to push for early referrals to sarcoma specialists. They advocate for accurate biopsies at experienced centers and work to establish treatment standards that save both lives and limbs.

Education initiatives reach the general public, helping people recognize symptoms earlier. The society also partners with insurance companies to reduce financial barriers and connects patients with NGOs that provide assistance.

Beyond medical guidance, the community offers something equally vital: proof that life continues after sarcoma. Survivors share their stories, mentor newly diagnosed patients, and demonstrate that this rare cancer doesn't have to be faced alone.

Every patient who finds the support group discovers what the founder learned through his own journey: together, they're stronger than the disease trying to isolate them.