Sarcoma awareness

What is a sarcoma?

Sarcomas are a group of rare cancers that grow in the soft tissue or bones of the body. They can affect almost any part of the body. There are around 100 different types of sarcoma and they tend to affect children and young adults. Aaron has a type of sarcoma called Rhabdomyosarcoma. 

Alveolar Rhabdomyosarcoma (aRMS)

Rhabdomyosarcoma originates in soft tissue such as muscle but can spread to the bone. It is most commonly found in the head, neck and limbs. Aaron has a subtype called alveolar rhabdomyosarcoma. This subtype unfortunately tends to be more difficult to treat as it is faster growing.

Who can be affected by rhabdomyosarcoma?

RMS is considered to be a childhood cancer, with the majority of cases being in children and teenagers. However we have connected with several other people diagnosed with the same disease in their late 20's or 30's.

Why do people get Rhabdomyosarcoma?

Much more research needs to be done to understand all sarcoma types, why they develop and the best ways to diagnose and treat them. It is widely accepted that some people are simply more genetically predisposed to get rhabdomyosarcoma than others, however it is still largely unknown.  

Cancer Research UK had a £404million budget in 2015/16 and only £5.5million, equating to 1.33% was spent on childhood cancers. Surely young people deserve to benefit from the great work they do a lot more than this. 

What are the symptoms of Rhabdomyosarcoma?

Symptoms depend on where in the body the cancer is affecting. Lumps are a common sympton of many sarcomas, and they may not always be painful. 

  • A tumour in the head or neck may cause a blockage to the eyes, nose, throat or ears. Aarons left nostril was blocked for months before diagnosis, and eventually as the tumour grew it began affecting his eye sight and hearing. 
  • A tumour in the abdomen can cause stomach pain and constipation.
  • A tumour in or around the bladder may cause symptoms such as blood in the urine and difficulty passing urine.

Why is raising awareness so important?

Raising awareness of rare cancers is very important. It can mean the difference between life and death. Early diagnosis is vital, before it spreads to other parts of the body. This makes it easier to treat and more likely to be cureable. The rarity of rhabdomyosarcoma along with other sarcomas means that most doctors are not familiar with it. This makes early diagnosis for RMS very difficult. It is claimed that a sarcoma patient is wrongly diagnosed for an average of 14 months before finding out they have a sarcoma. How can we get diagnosed with something that nobody knows about!? This needs to change and people like us are trying to make that happen.