Dedicated to childhood cancer research


What is it?

The Greek origins of the word mean:

  • rhabdo – striped
  • myo – muscle
  • sarcoma – soft tissue tumour

A sarcoma is a rare type of cancer that develops in bone, muscle or cartilage.

Before and after scans of Ruby's legs
Imaging of Ruby’s leg at diagnosis (on right) and after 3 cycles of 1st line treatment (on left)

Rhabdomyosarcoma is the most common soft tissue sarcoma found in children. It can develop in muscle, fat, blood vessels or any other tissue that supports, surrounds and protects the organs of the body. It can grow almost anywhere but is most commonly found in the head and neck, the pelvic organs or near the testes. Less commonly, tumours occur in limb muscles, the chest or abdominal wall.

Find out more about Rhabdomyosarcoma on the Children’s Cancer and Leukaemia Group (CCLG) website.

Rhabdomyosarcoma is often shortened to rhabdo or RMS.

Ruby in hospital

Diagnosis and prognosis

There are different types and the prognosis varies a lot depending on which type of rhabdomyosarcoma the patient has.

Once you have a diagnosis, rhabdo may be shortened to ARMS (alveolar), ERMS (embryonal), or another abbreviation ending RMS, prefixed by letters indicating the type, location, or both.

Research has highlighted the importance of ‘fusion testing’ in addition to histological classification at diagnosis so that patients can be allocated to appropriate low, intermediate or high risk groups and their treatment tailored appropriately.

Read this paper for more information about the complexities of rhabdomyosarcoma diagnosis. The summary states that ‘poor outcomes associated with ARMS likely relates to the presence of PAX-FOXO1 fusion genes and not to histological features’.

This is why research is so vital for this disease; there is still a lot to understand and effective medicines to find. There is currently no known cure for relapsed metastatic alveolar rhabdomyosarcoma.

How common is it? 

8% of childhood deaths in Scotland from 2014 to 2019 were cancer related. 

Rhabdomyosarcoma accounts for 5% of the childhood cancer deaths in Scotland during the same period.

This means that 0.4% of childhood deaths in Scotland are due to rhabdomyosarcoma. It is rare. It is considered an ‘orphan’ disease.

Because it’s rare, it gets little publicity, little funding and little progress is therefore made to change the prognosis for children diagnosed with the worst forms.

How is it treated?

Standard treatment consists of chemotherapy, surgery and radiotherapy. Some patients may receive brachytherapy and/or proton beam therapy.

Ruby having chemotherapy
Receiving chemotherapy in the Royal Hospital for Sick Children, Edinburgh
Ruby having radiotherapy
Radiotherapy session at the Western General Hospital, Edinburgh
Rubys legs after radiotherapy
The effects of radiotherapy

First and second line treatment follows a standard protocol within the UK.

Lots of websites providing information about treatment for rhabdo mention surgery. Apart from biopsies, central line and gastrostomy tube insertions, Ruby didn’t have any surgery. Why? There was no point. At diagnosis the disease was so widespread it would have made no difference to her prognosis. To remove the tumour in her ankle would have meant amputation which would have ruined her quality of life. The tumours in her spine were considered unresectable (not capable of being surgically removed).

We advise any parent facing a diagnosis to request a second opinion about surgery if it’s not offered.

MRI scan of Ruby's spine
Imaging of Ruby’s back towards the end of her life. The dark area growing across the spinal cord into the spine was the cause of her paralysis.

What’s happening with research?

One of the most exciting and best funded studies launched in the last year is part of the Cancer Moonshot Initiative in the US. There is also research going on within the UK, funded by our friends at:

There are other trials taking place including “FaR-RMS” funded by Cancer Research UK and other studies run by the European Paediatric Soft Tissue Sarcoma Study Group, as part of the European Society for Paediatric Oncology. All the money raised by Be More Ruby goes directly to CCLG to support further research into better treatments for rhabdomyosarcoma.
Ruby on ventilation