Liposarcoma: symptoms, types, diagnosis, treatment and survival

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, and you may feel it before you see it. The lump is usually solid to the touch, painless and hard to move around under the skin. It continues to grow and may become painful as it does.

Cancer Research UK adds that in the early stages soft tissue sarcomas do not usually cause symptoms. Other symptoms depend on where the sarcoma is. The NHS says a sarcoma near the tummy can cause tummy pain and constipation, and one near the lungs can cause a cough that does not go away.

The NHS advises seeing a GP if you have a lump or swelling somewhere on your body, noting that lumps are very common and having one does not definitely mean you have sarcoma.

Soft tissue sarcomas are cancers of the connective tissues of the body, including fat, muscle, nerves and fibrous tissue. Cancer Research UK says liposarcomas develop from fatty tissue and can grow anywhere in the body, although the most common sites are the thigh and the deeper tummy, behind the abdominal cavity, called the retroperitoneum. They usually show up as soft lumps, and account for about 20% of soft tissue sarcomas in adults.

Not every lump is a cancer. The NHS says lumps and swellings are very common and can be caused by many conditions, which is why a lump that is deep, growing or painful needs assessment by a GP and, if necessary, a specialist.

Cancer Research UK and Sarcoma UK both list four types of cancerous fatty tumour: well differentiated liposarcoma, dedifferentiated liposarcoma, myxoid liposarcoma and pleomorphic liposarcoma. The type is determined by examining a sample of the tumour under the microscope.

The NHS says treatment depends on the type of soft tissue sarcoma, the size of the cancer, where it is in the body, whether it has spread to organs and your general health, which is why the exact subtype and location drive decisions about surgery, radiotherapy and chemotherapy. Other kinds of soft tissue sarcoma, such as leiomyosarcoma and rhabdomyosarcoma, are managed differently, so an accurate diagnosis matters.

The GP will examine any lumps, and the NHS says they may arrange blood tests and an ultrasound scan and may refer you to a specialist, which can be an urgent referral. The specialist may arrange blood tests, scans such as ultrasound, CT or MRI, and a biopsy, where a small sample of cells is collected from the lump with a needle. You may not have all these tests.

The NHS says it can take several weeks to get the results, and it does not definitely mean anything is wrong if they are slow. You can call the hospital or GP if you are worried. If sarcoma is confirmed, you may need more CT scans, a PET-CT scan or genetic testing, which show the type, whether the cancer has spread and whether certain gene changes are involved. A group of specialists looks after you, including a clinical nurse specialist who is your main point of contact.

According to the NHS, soft tissue sarcomas are usually treated using surgery and radiotherapy, and you may also be offered chemotherapy and targeted medicines. Surgery is the main treatment and aims to remove as much of the cancer as possible. For sarcoma in an arm or leg the surgeon will try to remove the cancer without damaging or removing the limb, known as limb-sparing surgery, and amputation is rarely recommended, usually only when the sarcoma has come back after limb-sparing surgery.

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

You have regular check-ups during and after treatment, and the NHS says not to wait for the next check-up if you have symptoms or side effects you are worried about. If the cancer cannot be cured, a palliative or symptom control team helps manage symptoms.

The NHS says soft tissue sarcoma is rare and it is not always known what causes it. You might be more likely to get it if you are over 65, have had radiotherapy in the past, have untreated HIV (which can cause Kaposi's sarcoma), have neurofibromatosis or have had retinoblastoma, a rare childhood eye cancer.

Cancer Research UK says we do not know what causes most soft tissue sarcomas, and that having a risk factor does not mean you will develop cancer. The NHS sources used here do not list any diet or lifestyle cause for liposarcoma.

Cancer Research UK says survival for soft tissue sarcoma depends on different factors, and because the cancer is less common, survival is harder to estimate than for more common cancers. For liposarcoma diagnosed in England between 2014 and 2016, almost 90 out of 100 people survived 1 year or more, and around 75 out of 100 survived 5 years or more.

The outlook for liposarcoma is affected by age: people younger than 60 have a better outlook than those aged 70 or older. These figures do not take into account the stage and grade of the cancer, where it is, or how well treatment works, so your specialist is the person to ask about your own outlook.

The NHS says the specialist care team explains the treatments, benefits and side effects, works with you to create a treatment plan and helps manage side effects. You have regular check-ups during and after treatment, with tests and scans, and should not wait for the next check-up if you have symptoms or side effects you are worried about.

Cancer Research UK also notes that other kinds of soft tissue sarcoma, such as leiomyosarcoma and rhabdomyosarcoma, are managed differently, which is one reason an accurate diagnosis of the exact type matters.

See a GP about any unexplained lump or swelling, particularly one that is large, deep, growing, painful or that has come back after surgery. Cancer Research UK also says to see your doctor if you notice anything that is not normal for you, while noting that sarcoma is rare and something else is much more likely to be the cause.

During and after treatment, the NHS says not to wait for the next check-up if you have symptoms or side effects you are worried about. For a life-threatening emergency, call 999. If you are unsure, NHS 111 can check symptoms and tell you what to do.

On the NHS, the usual route is GP, then an urgent referral to a specialist team, which the NHS says includes a clinical nurse specialist as your main point of contact during and after treatment.

Some people ask for a private opinion alongside NHS care. The UK sources used here do not set out private services or costs, so this guide does not either. Whichever route you use, ask for copies of your scan and biopsy reports so any second opinion can build on them.