Rhabdomyosarcoma in Children

Rhabdomyosarcoma in children: Symptoms & Diagnosis – Symptoms of soft tissue sarcomas depend on the part of the body affected. 

The most common sign is a swelling or lump.

• If the tumour is in the head area, it can sometimes cause a blockage and a discharge from the nose. Occasionally an eye may appear swollen and protruding.
• If the tumour is in the abdomen, the child may have discomfort in the abdomen and difficulty going to the toilet.
• If the tumour is in the bladder, the child may also have blood in the urine.

A variety of tests and investigations may be carried out to diagnose a soft tissue sarcoma. Blood and bone marrow tests will be taken. A biopsy is usually taken so the tumour cells can be examined under the microscope. Imaging techniques – including X-ray and ultrasound, CT or MRI scans – will be used to determine the exact size and location of the tumour and whether it has spread to other parts of the body. Then the cancer can be staged, guiding treatment.

Treatment of rhabdomyosarcoma often causes side effects and these will be discussed before treatment starts.

The possible side effects depend on the treatment given and the part of the body being treated but may include nausea and vomiting, hair loss, reduced resistance to infection, bruising and bleeding, tiredness and diarrhoea.

These problems are all temporary and can be minimised with good supportive care.

Follow-up

Children will have regular follow-ups to check for any recurrence of the cancer and for any problems which may arise as a result of the treatment they were given.

A small number of children may develop long-term problems because of their cancer treatment.

Surgery and radiotherapy may both cause functional or cosmetic problems depending on the area of the body in which the tumour occurred. Chemotherapy may cause problems with heart and kidney function, fertility problems and a small increase in risk of developing another cancer.

Occasionally, the cancer can recur. This is called a relapse. Relapse occurs most likely as a result of a few of the original cancer cells surviving the treatment. Sometimes, this is because cancer cells spread to other parts of the body and were too small to be detected during the follow-up immediately after treatment.

The treatment and prognosis for relapsed RMS will depend on the site of relapse, whether there was previous radiotherapy, the original size at diagnosis, and the time to relapse.

Long-term and late effects of treatment

Many children have their treatment as part of a clinical trial. 

Trials aim to improve understanding of the best way to treat the cancer, usually by comparing the standard treatment with a new or modified version.

If appropriate, the child’s medical team will discuss participation in a relevant trial. Participation is optional but may offer the opportunity to receive new treatments.

Children with Cancer UK is funding a number of research projects focused on rhabdomyosarcoma.

Read Krystal’s victory against rhabdomyosarcoma, told by her mum, Rebecca.

“A small red mark appeared above her lip and the GP initially treated her for an infection. We used creams and were given antibiotics, but it started spreading and getting bigger. After three long months of different antibiotics and creams and different doctors looking at her we went to the Ear, Nose and Throat Unit. As soon as the doctor had seen her he booked a biopsy to have a small piece of the lump removed for testing.

A week later the results were in and we were taken to a small room. I’ll never forget that day. They said: “I’m sorry, but your daughter has cancer: rhabdomyosarcoma”. So many questions race around your head. Will she die? Will her hair fall out? How likely is it the chemo will work? But I had to stay strong for her. And Krystal, no matter what, was always smiling.

She had intense chemo every three weeks for three days – six doses at once. It was tough, but she was tougher. Her hair had fallen out after the first two weeks and in the first eight months we were only home for around 12 days.

Krystal’s rhabdomyosarcoma tumour on her upper lip had spread to her lymph nodes in her neck and we were told she also needed radiotherapy. She had this in the adult hospital at the Clatterbridge Cancer Centre and had a total of 28 sessions to her face and neck. Krystal still had her chemo in between the radiotherapy. You wouldn’t think they could do so much on a little baby. Her strength was amazing.

Three months later we had an MRI scan to see if the eight months of chemo and radiotherapy had worked. The results came back showing just a small shadow on the scan with no active cancer growing. I cried happy tears that day.

Krystal started maintenance chemotherapy in October 2014, having been diagnosed in March 2014. This involves a small amount of chemo through her central line every week, and oral chemo every night. It lasted a year, and finished in October 2015.

It’s now been two years since Krystal finished chemotherapy treatment. She’s grown up a lot, she was only 11 months when she diagnosed with cancer and is going to turn five in just four months time. We are so proud of her and the beautiful girl she’s turned into. Although we still have the scan every few months, her future is uncertain. We will just take every day as it comes.”

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