Synovial sarcoma: symptoms, diagnosis and treatment in the UK

Soft tissue sarcomas are cancers that start in the connective and supporting tissues of the body, such as fat, muscle, blood vessels, nerves, tendons and the tissues around joints, according to Cancer Research UK. The NHS describes soft tissue sarcoma as a rare type of cancer that starts in soft tissue, such as muscle and fat.

Cancer Research UK describes synovial sarcoma as a tumour of uncertain differentiation, meaning the cell of origin is unknown and the cells do not look like any specific type of soft tissue. Despite the name, synovial sarcomas do not start in the tissue lining the joints and can be found in areas where there is no synovial tissue. Knowing the exact type matters because it helps the doctor plan treatment.

The NHS says the most common symptom of soft tissue sarcoma is a lump somewhere on the body. It is usually found deep under the skin, is solid to touch, painless and hard to move around under the skin. It will continue to grow and may become painful as it does. Cancer Research UK says that in early stages soft tissue sarcomas do not usually cause symptoms, and that synovial sarcomas can be present for some time before they start to grow bigger.

Other symptoms depend on where the lump is: the NHS gives tummy pain and constipation for a sarcoma near the tummy and a persistent cough for one near the lungs. Cancer Research UK says a lump is more likely to be a sarcoma if it is large (for example more than 5 cm across) or getting bigger, is deep in the body tissues, is painful, occurs when you are older, has come back after surgery, or is in an area that has had radiotherapy.

The NHS says to see a GP if you have a lump or swelling somewhere on your body, while stressing that lumps are very common and having one does not definitely mean you have a soft tissue sarcoma. Cancer Research UK says that soft tissue sarcoma is rare and it is much more likely that something else is causing a lump, but it is best to get it checked, and to see your doctor if you notice anything that is not normal for you.

The GP will examine the lump and may arrange blood tests and an ultrasound scan, according to the NHS, and may refer you for more tests or to a hospital specialist, which can be urgent but does not definitely mean you have cancer.

Cancer Research UK says that GP tests usually include a physical examination, an ultrasound scan and blood tests, with an MRI or CT scan possible depending on results. If a sarcoma is suspected you are referred to a specialist, usually a cancer doctor who specialises in sarcoma, who may do an MRI, CT scan, x-ray and a biopsy.

A biopsy takes a sample of tissue for a pathologist to examine under the microscope, and is the only way to find out for sure if you have soft tissue sarcoma. Cancer Research UK says a core needle biopsy under local anaesthetic is usual, sometimes guided by ultrasound or CT, and a surgical biopsy is less common. The NHS says that after diagnosis you may need further CT scans, a PET-CT scan and genetic testing, which show the type, whether it has spread and whether certain gene changes caused it. Results can take several weeks.

The NHS says treatment depends on the type of sarcoma, its size, where it is, whether it has spread and your general health. Soft tissue sarcomas are usually treated with surgery and radiotherapy, with chemotherapy and targeted medicines also sometimes offered. A specialist team explains the options and side effects.

Surgery is the main treatment, aiming to remove as much of the cancer as possible. For a sarcoma in an arm or leg the surgeon will try limb-sparing surgery, removing the cancer without removing the limb. The NHS says amputation is rarely recommended and is usually only considered if the sarcoma has come back after limb-sparing surgery.

Radiotherapy may be offered before surgery to shrink the cancer, after surgery to reduce the risk of it coming back, or to shrink cancers that have spread. The NHS says chemotherapy is not usually used for soft tissue sarcoma but may be offered before surgery for types that respond well, or to slow growth and relieve symptoms if it has spread. Targeted medicines are sometimes used to slow growth of certain types.

The NHS says that if the cancer has spread you may be offered further surgery. If you are told that the cancer cannot be cured, the aim becomes slowing growth and spread and helping you live longer with the best possible quality of life. You will be referred to a palliative care or symptom control team, and your clinical nurse specialist can help you and your family get support.

Cancer Research UK says you will have regular follow-up appointments after treatment. The NHS says that you will have regular check-ups during and after treatment, possibly with tests and scans, and that you do not need to wait for your next check-up if you have symptoms or side effects you are worried about.

Your team includes a clinical nurse specialist who is your main point of contact. Macmillan Cancer Support and Cancer Research UK provide information and support.

Cancer Research UK says not all hospitals have sarcoma specialists, so you might need to travel to another hospital to see one. If you also seek a private opinion, it is sensible to make sure your NHS team knows about it.