The lack of information about rare cancers is a very real issue which needs to be addressed with all speed. | Photo: iStock
In a study conducted by the National Cancer Centre Singapore (NCCS), it has been found that of all the different types of cancers diagnosed among Singaporeans, 25% are rare cancers. Teenagers and young adults are more prone to this deadly disease, with only 47% of survival rate as compared to the 65% survival rate of other more common types. Alarming statistics notwithstanding, the lack of information about rare cancers is a very real issue which needs to be addressed with all speed. Read on to find out more about some of the key points surrounding rare cancers, as discussed with Dr. Chan Yong Sheng Jason who is a consultant oncologist at NCCS.
What are Rare Cancers?
Cancers that occur in fewer than 15 out of 100000 people each year are considered rare, as defined by the National Cancer Institute of USA. For many European countries, the cut-off is 6 out of 100000 people. Because only a handful of people around the world are affected by these cancers, research about them is very difficult. Consequently, prevention, diagnosis and treatment are also hampered.
According to Dr. Chan, some of the rare cancers he has come across are soft-tissue and bone sarcomas, non-cutaneous melanomas (acral, mucosal and ocular) as well as certain types of lymphoma like T-cell lymphoma and Hodgkin lymphoma. Sarcomas are aggressive tumours that can affect a variety of tissues and organs in the human body. Lymphoma cancer, on the other hand, develops in lymphocytes, a special type of white blood cells crucial in forming the body’s resistance to disease. Melanomas are cancers that develop in melanocyte cells containing pigment.
Head and neck cancer (categorised by the area in which they begin like nasal cavity, larynx, etc.), thyroid cancer and neuroendocrine cancer are some other rare cancers diagnosed in the world today. Paediatric or childhood cancers also fall into this category because in most cases, it arises out of some random mutation in growing cells that are difficult to predict and almost impossible to treat.
How to Diagnose and Treat Rare Cancers?
Timely diagnosis of rare cancers is always a challenge, especially if the health providers are not specialised in the field. The limited information available for clinical practices also poses a stumbling block to proper treatment. According to Doctor Chan, a tertiary cancer institute can greatly reduce diagnostic and treatment uncertainty with inputs from multiple disciplines and specialist advice. In the absence of standard approved treatments, doctors will have to try from clinical trials or extrapolated evidence from other cancer types. The presence of an experienced specialist will greatly increase the chance of the patient’s survival.
Why do the Young Fall Prey to Rare Cancers?
The causes of cancer in children vary greatly from that of adults. This is even truer of rare cancers; in fact, any cancer in children can be considered under this category because in many cases, complex genetic factors form the underlying cause. The data from NCCS prove that teenagers and young adults are more prone to rare cancers than adults. The cause for this
phenomenon has yet to be identified, mainly due to lack of research material.
What to do if a Person is Diagnosed with a Rare Cancer?
The right knowledge will go a long way in ensuring the individual’s survival if diagnosed with a rare cancer. Tertiary cancer institutes with proper facilities and expertise are the best bet in gaining the required information, especially when it comes to rare cancers. Active participation in research studies can further the fighting chances. Patient support groups will provide some much-needed support, both psychologically and information-wise.
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Source: NCCS, Run for Hope
Also READ: Understanding The Most Common Childhood Cancers: A Comprehensive Guide For Parents