July has been designated as awareness month for Sarcoma which is sometimes called a "forgotten cancer" because it's rare. No wonder, Rashi Kapoor who has beaten the scourge twice is pulling out all the stops to create awareness about Sarcoma cancer and how lethal it could be if left unrecognised or untreated. She tells ARCHANA JYOTI that she has started Sachin Sarcoma Society for the world’s greater good.
The fight against cancer can be a daunting, isolating and emotionally fraught, says Rashi Kapoor, a mother of two. She knows better.
In 2012 she was diagnosed with one type of cancer and in 2016 she was told she got different type of cancer “I wasn't sure if I would survive it, let alone continue my teaching profession.”
But she didn't give up. Even as the news that she got the rare cancer had devastated her, she did not give in. Rashi looked beyond the disease, with the support of her family, efficient doctors and community. Now, in a bid to extend some much-needed emotional support and handhold such patients and survivors, she has started Sachin Sarcoma Society. The idea is to inspire and be vocal about the issues among those who are battling the disease and those who are unaware even about its existence.
“People get scared when they are diagnosed with cancer but I want to tell everyone that cancer is not the end of life. If you keep your will power strong, train your mind to see the good in every situation and have an optimistic approach in life, you can live your life to the fullest,” she has put up a brave face.
Rashi took recourse to many therapies to keep her spirit going. “When my treatment was going on, I used to do yoga as yoga gave me a lot of mental strength to remain calm and cultivated the habit of gardening and reading positive thinking books. Taking care of plants, watering them, nurturing them helped me to control negative thoughts coming to my mind,” she emphasizes.
I have become independent now. I cook in the kitchen, prepare meals for my family, go and attend my son’s PTM in school , and take my daughter to the park.
Her doctor, Sameer Rastogi, Assistant Professor, Sarcoma and GIST Medical Oncology Clinic, AIIMS, Delhi says that there are more than 80 kind of sarcoma. They are heterogeneous Some of them are synovial sarcoma, osteosarcoma, Ewings sarcoma, leimyosarcoma, liposarcoma, fibrosarcoma, GIST etc. Each and every sarcoma has to be treated in a different way.
Remarkably, this cancer can affect individuals across all age groups, from young children to adolescents, men, and women, and can target any region of the body, further complicating diagnosis and treatment strategies. Early detection and treatment is a key for many other diseases, notes Dr Rastogi. Sarcomas are characterized by their rarity, affecting only 1 out of 100 cancer cases, making them a distinct and lesser-known form of cancer.
According to Rashi, Sarcoma patients face significant emotional challenges and mental health issues. The stress, anxiety, and depression that accompany a sarcoma diagnosis can be overwhelming. Treatment may disrupt education, particularly for children, and surgeries such as rotation plasty or amputation can result in physical disabilities that affect employment and personal relationships. There can be a sense of isolation too.
“That’s where my support group, the Sachin Sarcoma Society in India intervenes--providing social support and addressing these emotional needs.”
She feels that society must strive to change attitudes and provide emotional support to help sarcoma patients cope. “The cost of drugs and medications used to treat sarcomas is often exorbitant. Immunotherapies and drugs like pazopanib, sunitinib, and Regorafenib can be financially burdensome for patients.
“Importing certain medications, such as anlotinib and dexrazoaxane, adds significant costs and delays to treatment. Expensive implants and prosthetics further compound the financial strain faced by sarcoma patients, with insurance coverage often falling short,” Kapoor points out.
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