By Rashi Kapoor, Co-Founder and Patient Support Head, Sachin Sarcoma Society

There are more than 100 types of cancer in the world. People are aware of and openly talk about cancers like breast cancer, blood cancer, and lung cancer. However, very few people talk about sarcoma, because it is an extremely rare cancer. Most people start hearing about sarcoma or searching for information only after they or their loved one is diagnosed.

I know this reality personally.

I am a two-time cancer survivor. I was diagnosed with synovial sarcoma in 2016, completed my treatment in 2017, and later underwent amputation in 2023. Living through sarcoma has not only shaped my life but has also given me a deep understanding of the struggles sarcoma patients face—physically, emotionally, socially, and financially.

My Journey and the Birth of Sachin Sarcoma Society

After completing my sarcoma treatment in 2017, I felt a strong need to give back to society. With the support of Dr. Sameer Rastogi, Additional Professor at AIIMS, New Delhi, I formed a sarcoma support group that later became Sachin Sarcoma Society (SSS) in 2018.

SSS was formed with a clear mission to spread awareness about sarcoma, build companionship among affected families, and remove the fear associated with this rare cancer. Over the years, we have been able to positively impact the lives of more than 9,000 sarcoma patients.

Having lived with sarcoma myself and having interacted with thousands of patients over the last eight years, I have seen first-hand the numerous challenges sarcoma patients face.

Before discussing those challenges, it is important to understand what sarcoma is.

What Is Sarcoma?

Sarcoma is a rare and high-grade cancer that arises from bones and soft tissues such as muscles, fat, nerves, and blood vessels. It can occur in any part of the body and often appears as a lump or swelling, which may be painless or painful

Sarcoma can affect any age group—children, adolescents, young adults, and the elderly. It is a highly heterogeneous cancer, with around 200 subtypes. Because it is so rare, patients diagnosed with sarcoma often feel isolated and lonely, and many struggle with mental health issues.

Challenges Faced by Sarcoma Patients

Sarcoma patients face multiple challenges, starting from the very beginning of their diagnosis.

Many patients experience misdiagnosis or late diagnosis. Often, they receive treatment from doctors who are not sarcoma specialists, which leads to inappropriate or incorrect treatment. Like any other cancer, early detection is crucial in sarcoma. Early diagnosis can save lives and, in many cases, save limbs.

Due to lack of awareness, patients usually first visit local physicians and begin incorrect treatment. By the time they reach tertiary cancer centres such as AIIMS, Tata Memorial Hospital, or Homi Bhabha Cancer Research Centre, the disease may have already spread. Once sarcoma becomes metastatic, curing the patient becomes extremely difficult.

Correct diagnosis is critical. Biopsy plays a very important role in sarcoma, and accurate pathology done at experienced tertiary centres can significantly improve prognosis. Sarcoma patients must take treatment only from sarcoma specialists who work in a multidisciplinary team involving pathologists, medical oncologists, radiation oncologists, and radiologists. Wrong treatment at the initial stage can have lifelong consequences, including amputation.

These are major administrative and medical challenges, but the struggles do not end there.

Emotional and Psychological Struggles

Emotionally, sarcoma patients go through immense turmoil.

Many patients ask, “Why me?”

Some experience suicidal thoughts and feel like giving up on life. The first questions that arise are:

“Will I survive?”

“Who will take care of my family if something happens to me?”

Because sarcoma often affects young adults, many compare themselves with peers who are progressing in their careers and feel left behind. Young women diagnosed with sarcoma worry about marriage and fertility, especially as chemotherapy can affect their ability to have children.

Patients undergoing chemotherapy also face body image issues—hair loss, eyebrow and eyelash loss, weight changes—which deeply affect their confidence. Many withdraw from social interactions, leading to further isolation and loneliness.

Financial, Logistical, and Social Barriers

Sarcoma treatment usually involves surgery, chemotherapy, radiation, or a combination of these. Treatment in private hospitals, expensive implants, or immunotherapy adds to the financial burden.

Patients from neighbouring countries like Nepal, Bangladesh, and others come to India for treatment and face severe logistical challenges—finding accommodation near hospitals, arranging visas, getting appointments, and navigating an unfamiliar healthcare system.

Many patients do not receive adequate family or employer support. Some lose their jobs after amputation or implant surgeries, which further worsens their financial stress. Relationship issues and lack of social support add to their suffering.

Thus, sarcoma patients face challenges that are physical, emotional, financial, administrative, and logistical.

Role of Sachin Sarcoma Society

Once diagnosed with sarcoma, patients must seek treatment at a good tertiary centre and should be part of a dedicated sarcoma support group like Sachin Sarcoma Society. We work to ensure that no sarcoma patient fights this disease alone.

Rarity of sarcoma does not mean neglect

Sarcoma patients should not suffer in silence just because their cancer is rare. Rarity must never mean neglect. There is an urgent need for doctors, hospitals, policymakers, insurers, diagnostic labs, NGOs, and the government to recognise sarcoma as a serious cancer that requires focused attention. Early referral to sarcoma specialists, correct biopsy and pathology at experienced centres, and timely treatment must become standard practice. Financial burden, delayed diagnosis, emotional trauma, and loss of livelihood can be reduced only when all stakeholders work together. Sarcoma patients deserve timely care, dignity, emotional support, and hope—and together, we can ensure that no sarcoma patient ever fights this disease alone.

Call to action – How Can We Make a Difference in Sarcoma Care?

To reduce barriers and improve outcomes, we must:

  • Increase awareness about sarcoma among the general public
  • Collaborate with doctors, government bodies, NGOs, diagnostic labs, insurance companies, and policymakers
  • Conduct more patient education and caregiver programs
  • Improve doctor training and referral systems
  • Strengthen patient advocacy with the government
  • Ensure timely referral of patients to sarcoma specialists
  • Connect patients with each other for peer support
  • Include dedicated sarcoma sessions in cancer conferences

When all stakeholders come together, there is hope that together we can be stronger than sarcoma and improve patient outcomes in our country.

Reach Out to Us

If you or your loved one is diagnosed with sarcoma, you are not alone.

📞 Helpline: 7303827447
📧 Email: support@sachinsarcomasociety.org
🌐 Website: www.sachinsarcomasociety.org