Symptoms of UPS can vary depending on the size and location of your tumour. You may experience all, some or none of these symptoms before you are diagnosed with UPS:

• A lump or swelling within the soft tissue of the body, which can occur anywhere in the body
• This lump is often fast-growing and painful

A specialist doctor will diagnose UPS through a series of tests. These may include:

• Physical examination – looking at and feeling any lump
• A scan – taking pictures of the inside of the body using scans such as ultrasound, x-ray, CT, MRI or PET scans
• A biopsy – taking and testing a sample of the tumour.

UPS is a “diagnosis of exclusion”. This means that the tumour shows no identifiable characteristics for the doctors to be able to diagnose it as a specific sarcoma type. A doctor will look to see if the biopsy looks like a specific sarcoma subtype and if it doesn’t, then it will be diagnosed as UPS

To read more about these scans and tests, click here

Surgery

• The first treatment method for UPS is surgery. The surgeon will remove the tumour and will aim to take out an area of normal tissue too – this is known as “taking a margin”. This is to make sure that all of the cancer has been removed
• When UPS affects the arms and legs, surgeons will do limb-sparing surgery so that the limb can continue to work well
• Although very rare, if the cancer has spread throughout the limb, then the surgeons may have to perform a partial or full amputation to stop the cancer

Radiotherapy

• This treatment uses high-energy radiation to destroy cancer cells
• It can be used either before or after surgery
• When used before surgery, radiotherapy aims to make the tumour smaller so that it can be more easily removed
• When used after surgery, radiotherapy aims to kill off any remaining cancer cells that have not been removed by surgery

Chemotherapy

• This treatment uses anti-cancer drugs to destroy cancer cells. It is sometimes used in patients that have a high risk of the cancer coming back or if it has spread to other parts of the body, also known as “metastasis”

Targeted and experimental therapies

• In UPS, researchers have been learning more about treatments known as “targeted therapies” and “immunotherapies”

Targeted therapy is a treatment that targets specific characteristics within cancer cells in order to stop them from growing and spreading.

Immunotherapy is a treatment that helps the person’s own immune system to fight and kill cancer cells.

• Researchers have found that some targeted therapies and immunotherapies worked well in clinical trials of UPS. But, more research and trials are needed before these treatments are approved

Clinical Trials

For all sarcoma clinical trials based in the UK that are currently recruiting, you can check our Clinical Trials Hub.

After treatment, you will have regular follow-up appointments for several years. You should receive a follow-up schedule from your sarcoma clinical nurse specialist. The follow-ups will usually include:

• A chance to discuss symptoms
• An examination to look for any signs of UPS returning. This may include scans such as CT or MRI scans
• A chest x-ray to rule out any secondary cancers occurring in the lungs

UPS can reappear in the same area after the treatment of a previous tumour; this is called a “local recurrence”.

If the cancer does reappear, it is important to get treated as quickly as possible. This could involve further surgery and/or radiotherapy; your treatment will be assessed on an individual basis. It is useful to check for recurrences yourself through self-examination: your doctor or sarcoma clinical nurse specialist can tell you what to look for.

If you are worried about your cancer returning, please contact your doctor or nurse. They may decide to bring forward the date of your follow-up appointment to investigate your concerns.

What if my cancer spreads to another part of my body?

A recurrence of UPS may be accompanied by cancer in other parts of the body. This is called “metastasis” or “secondary cancer”. Some people are diagnosed with sarcoma because their metastases have been discovered before their primary UPS tumour. In UPS patients, these secondary cancers may appear in the lungs, which is why a chest x-ray is taken at follow-up appointments.

Secondary cancers may also appear in the lymph nodes and bones. Treatment for secondary cancer may involve surgery, radiotherapy or other therapy as appropriate; your treatment will be assessed on an individual basis.