Daijiworld Media Network – New Delhi
New Delhi, Jan 12: With the rising burden of cancer in India, awareness around common cancers such as breast, lung and oral cancer has increased significantly. However, there are more than 100 types of cancers, many of which remain largely unknown. Sarcoma, a rare and aggressive cancer, is one such disease that often goes unnoticed until it strikes close to home.
For most people, sarcoma is a term they hear for the first time only after a diagnosis in the family. I know this reality personally. I am a two-time cancer survivor, diagnosed with synovial sarcoma in 2016. I completed treatment in 2017 and later underwent an amputation in 2023. Living through sarcoma has given me a deep understanding of the physical, emotional, social and financial challenges patients endure.
What is sarcoma?
Sarcoma is a rare, high-grade cancer that arises from bones or soft tissues such as muscles, fat, nerves and blood vessels. It can develop anywhere in the body and usually presents as a lump or swelling, which may or may not be painful.
Sarcoma can affect people of all age groups, from children to the elderly. It is highly heterogeneous, with nearly 200 subtypes. Because of its rarity, patients often feel isolated, misunderstood and emotionally distressed, with many experiencing anxiety, depression and loneliness.
Giving back through awareness and support
After completing my treatment, I felt a strong responsibility to give back. With the support of Dr Sameer Rastogi, additional professor at AIIMS, New Delhi, a sarcoma support group was formed in 2017, which later became the Sachin Sarcoma Society (SSS) in 2018.
The organisation was established with the aim of spreading awareness, building companionship among sarcoma-affected families and removing fear associated with this rare cancer. Over the years, SSS has positively impacted the lives of more than 9,000 sarcoma patients across the country.
Challenges faced by sarcoma patients
Sarcoma patients face numerous challenges from the very beginning. Misdiagnosis or delayed diagnosis is common, and many patients initially receive treatment from doctors who are not sarcoma specialists. This often leads to incorrect treatment, which can have lifelong consequences.
Early diagnosis is crucial in sarcoma. When detected early, not only can lives be saved, but limbs can often be preserved. Unfortunately, due to lack of awareness, patients first approach local physicians and reach tertiary cancer centres only after the disease has progressed. Once sarcoma becomes metastatic, cure becomes extremely difficult.
Accurate biopsies and expert pathology at specialised centres are critical. Treatment must be handled by multidisciplinary sarcoma teams involving surgical, medical and radiation oncologists, radiologists and pathologists. Wrong treatment at the initial stage can lead to outcomes such as amputation or recurrence.
Emotional and mental health struggles
Beyond medical challenges, sarcoma patients undergo intense emotional distress. Questions of survival, fear for family members and uncertainty about the future dominate their thoughts. Young patients often compare themselves with peers progressing in life, leading to feelings of inadequacy and despair.
Young women diagnosed with sarcoma worry about fertility and marriage, especially since chemotherapy can affect reproductive health. Changes in physical appearance due to chemotherapy, such as hair loss or weight fluctuations, further impact self-esteem, pushing many patients into social withdrawal.
Financial toxicity of cancer care
Sarcoma treatment is expensive and often involves surgery, chemotherapy, radiation or all three. Costs increase further with advanced implants, immunotherapy and treatment in private hospitals.
Many patients receive limited support from employers or family. Some lose their jobs following amputations or major surgeries, adding to financial stress. Relationship issues and lack of social backing compound their suffering.
The way forward
Support groups play a crucial role in ensuring that no sarcoma patient fights alone. Rarity should never translate into neglect. There is an urgent need for doctors, hospitals, policymakers, diagnostic labs, insurers, NGOs and the government to recognise sarcoma as a serious cancer requiring focused attention.
Early referral to sarcoma specialists, accurate biopsies, expert pathology and timely treatment must become standard practice. Emotional support, financial protection and rehabilitation should be integral to care.
To improve outcomes, there is a need to increase public awareness, strengthen doctor training and referral systems, enhance patient advocacy, expand insurance coverage, conduct caregiver education programmes and include dedicated sarcoma sessions in cancer conferences.
Sarcoma patients, like all cancer patients, deserve dignity, timely care, emotional support and hope — and above all, the reassurance that they are not fighting this battle alone.