Ever Heard of Sarcoma?

By Dr. Akshay Tiwari in Musculoskeletal Oncology

Mar 20 , 2023 | 2 min read

Ever heard of sarcoma? In all likelihood, you have not unless there has been an unfortunate occurrence with someone you know. The reason is this; they form just one percent of all cancers. Because of this rarity, it is common to see delays in the diagnosis and the much-needed referral to a specialised sarcoma unit. In fact, at our sarcoma clinic, a familiar conversation is, "we never knew bones can also have cancer!" or "we thought it was just another injury."

What exactly is sarcoma?

It's a cancer of connective tissue, which includes bones, muscles, tendons, ligaments, nerves, vessels etc. The upper and lower limbs are the most commonly affected organs, although it can affect any part of the body. Once diagnosed with imaging and biopsy, treatment of sarcomas may consist of a surgical "wide excision" in most cases, where the tumour is carefully removed along with a layer of surrounding normal tissue, followed by appropriate reconstruction.

This "limb salvage surgery" forms the mainstay of sarcoma surgery in today's times and is possible only if the patient reaches a sarcoma unit early enough. Depending on the diagnosis, patients may also be advised to undergo chemotherapy and/or radiation therapy. As with all rare diseases, planning and execution of sarcoma management are best performed by specialised multidisciplinary sarcoma teams, with evidence-based protocols individualised for the patient.

The rarity of sarcomas does not make the problem any smaller. Consider this; sarcomas of bone commonly affect children and young adults, and a delay in diagnosis may mean the loss of precious limbs and lives of young individuals at crucial stages of their lives. Sarcomas of muscle, or "soft tissue sarcomas", as they are called, are more common in older individuals and are also potentially limb and life-threatening.

According to a study by the Indian Pediatric Hematology Oncology Group, the average delay in the diagnosis of sarcoma in a child is 3 months. In another study, the average distance a child travelled in India to reach a sarcoma centre was found to be 450 km. As with any cancer, a delay might mean upstaging, leading to a curable sarcoma becoming incurable and ultimately fatal.

What can we do to bridge this gap?

For starters, let us talk about sarcoma. Healthcare providers, patient advocacy groups, NGOs, schools, and colleges should create an environment of awareness about this rare cancer. Any swelling or lump that is more than 5 cm in size (more than the size of a lemon), increasing in size over time, and/or is painful should be considered as sarcoma and investigated accordingly.

Once suspected, patients affected by sarcoma should be referred to specialised sarcoma units. In fact, even a biopsy for diagnosis should be performed by a sarcoma surgeon; a wrongly performed biopsy could lead to amputation in an otherwise salvageable limb. Fortunately, there are NGOs and patient support groups working closely with sarcoma units, raising awareness and helping patients with treatment.

The theme of World Cancer Day 2023 is 'close the care gap.' Let us do our bit to spread the word. Let us make sarcoma a familiar word. Let us talk about the 'forgotten cancer'. Let us talk about sarcoma.