Increasing Sarcoma Awareness: A Letter to the Editor

An ESUN Article by Dr. CR Chandrasekar

Dear Editor,

Thank you for inviting me to write this letter regarding sarcoma education and awareness. Sarcomas are rare cancers constituting about 1% of all cancers. However, benign lumps and bumps are far more common. Metastatic bone tumours are also more common than primary bone sarcomas.

Increasing sarcoma awareness among medical professionals

In the United Kingdom, there are currently no designated modules on the undergraduate medical curriculum on sarcomas and fewer than 20 designated centres treating sarcoma patients. Even in the designated sarcoma centres, only a few students get the opportunity see sarcoma patients and work with experienced sarcoma clinicians. This results in many medical students graduating with little or no knowledge of sarcomas and even after graduation, the opportunities, time and desire to learn more about sarcomas are scarce. This often results in delayed and even incorrect diagnoses of sarcomas, inappropriate interventions and poor outcomes, as 'what the mind does not know, the eye cannot see.'

In a UK survey of a group of teenagers and young adults with cancer, 42% of those with soft tissue sarcoma said they visited their GP more than five times before they were referred to hospital. The mean number of physician visits before referral to a specialist unit for bone or soft tissue sarcoma was 4.85 in an American study. Between 19% and 53% of new patients with soft tissue sarcomas referred to sarcoma centres are following inadequate initial excisions, and 59% have residual sarcoma on re-excision.

Unfortunately, because of the rarity of sarcomas, education about them is unlikely to become a part of the undergraduate medical curriculum, meaning it is up to 'interest groups' to improve sarcoma awareness. This could be done through voluntary awareness projects with incentives (e.g. prizes and funded fellowships), which would also provide opportunities to attract top students and doctors to sarcoma and allied specialities early in their career.

There is also the option of having e-learning modules provided by reputed medical journals accessible to all interested medical professionals with the ability to learn at their own time and space (see the BMJ learning module).

Increasing public awareness of sarcoma

Another part of the conundrum is the difficulty in raising public awareness of sarcomas. Obviously benign lumps and bumps are far more common and it is important not to over-emphasize sarcomas with public awareness campaigns. Patients do, however, have to take some responsibility for their own health - leaving tumours to reach large size is common. Often sarcomas are painless, and many patients feel that there is no need for intervention unless there is physical or functional impairment. This notion is compounded by false assurance from well-intentioned peers and professionals that the swelling may be benign. It is important for the public and professionals to be aware of red flags.

With a mysterious lump often comes the fear of a possible cancer diagnosis, resulting in reluctance to seek treatment. Hence it is important to emphasize that sarcomas are treatable, especially when they are diagnosed early, and there are a number of people who have been cured.

Even so, a simple message like 'lumps could be dangerous – have them checked,' is a useful option to promoting public awareness. Local media can be helpful in raising sarcoma awareness. Local public awareness initiatives such as the patient's story and the local soccer star promoting awareness may also be helpful.

In conclusion, a comprehensive approach to raise public and professional awareness may result in early diagnosis, avoid inappropriate treatment and improve outcomes and survival for sarcoma patients.

Yours sincerely,

CR Chandrasekar
Consultant Orthopaedics
RLBUHT, Liverpool, United Kingdom.