Sarcoma is rare, but rarity should never be an excuse for neglect. As a cancer survivor and an amputee, I know the physical and emotional toll of this disease firsthand. It is a high-grade cancer arising from bones and soft tissues – muscles, fat, nerves, and blood vessels.
With over 200 subtypes, it is highly heterogeneous and can strike anyone, from children to the elderly. Yet, despite its severity, awareness remains dangerously low.
The Diagnostic Gap
The biggest hurdle is the beginning. Because it’s rare, the path to a correct diagnosis is often broken:
- Misdiagnosis: Patients frequently visit local physicians who lack specialized training, leading to incorrect or delayed treatment.
- The Spread: By the time many reach tertiary centers, the disease has often become metastatic, making it much harder to cure.
- Specialized Care: Treatment must be handled by a multidisciplinary team—pathologists, oncologists, and radiologists who specialize specifically in sarcoma. A wrong move at the start can lead to lifelong consequences, including unnecessary amputation.
More Than a Medical Battle
The struggle isn’t just biological; it’s emotional and financial.
- Isolation: Many patients feel lonely and isolated, often comparing their stalled lives to peers who are moving ahead in their careers.
- Financial Strain: Surgery, chemotherapy, radiation, and expensive implants create a massive financial burden.
- Physical Impact: Treatments like chemotherapy affect fertility and body image, while surgeries can lead to job loss and a lack of social support.
Our Mission at Sachin Sarcoma Society (SSS)
In 2018, with the support of Dr. Sameer Rastogi from AIIMS, New Delhi, we formed SSS to ensure no one fights this alone. Our mission is simple: spread awareness, build a community for affected families, and strip away the fear surrounding this diagnosis. To date, we have supported more than 10,000 patients connected globally.
The Way Forward
To improve outcomes, we need a systemic shift:
- Early Referral: Correct biopsies and pathology at experienced centers must become the standard.
- Stakeholder Collaboration: Doctors, insurers, and the government must recognize sarcoma as a priority to reduce the financial and diagnostic burden.
- Peer Support: Connecting patients and including dedicated sarcoma sessions at medical conferences is vital.
Every patient deserves dignity, timely care, and most importantly hope.
Contact Sachin Sarcoma Society:
- Helpline: 7303827447
- Email: support@sachinsarcomasociety.org
- Web: www.sachinsarcomasociety.org
This article is published in The Hindu and written by Rashi Kapoor, President, Sachin Sarcoma Society.
