Soft tissue sarcoma

Also called Sarcoma, Bone sarcoma

A rare cancer of connective tissue. A painless lump bigger than a golf ball and growing is the rule that gets people referred in time.

What it is

Cancer arising in the connective tissues: muscle, fat, nerve, blood vessel, cartilage and bone. There are more than 100 subtypes, and together they account for around 1 per cent of adult cancers.

They are rare, and rarity is the problem. A lump is usually a lipoma or a cyst, so a sarcoma gets watched, or removed inexpertly by a surgeon who did not suspect it, which compromises the definitive operation and the outcome.

**The referral rule is simple and worth knowing: any soft tissue lump that is larger than about 5 centimetres, deep to the fascia, growing, or painful, should be referred on an urgent pathway for imaging before anybody operates on it.** Painless does not mean benign; most soft tissue sarcomas are painless.

For bone sarcoma, the pattern is persistent bone pain, often worse at night and at rest, sometimes with swelling, in a child, teenager or young adult, and it is repeatedly attributed to growing pains or sports injury for months.

**Treatment belongs in a specialist sarcoma centre.** Outcomes are measurably better there, and unplanned excision by a non-specialist is a recognised and avoidable harm.

Some sarcomas arise in previously irradiated tissue years later, and some in people with neurofibromatosis or a family cancer syndrome.

Signs you might notice

A lump, usually painless, that is growing.

Larger than about 5 centimetres, roughly a golf ball.

Feeling deep rather than just under the skin, and not easily moveable.

Sometimes painful, particularly if pressing on a nerve.

Bone sarcoma: persistent bone pain, worse at night and at rest rather than on movement; swelling over a bone; a fracture through a bone after minor injury.

Urgent referral: any lump that is over 5 centimetres, deep, growing, painful, or recurring after previous removal.

Also: persistent bone pain at night in a child or young adult, which needs an X-ray rather than reassurance.

**Do not have a suspicious lump removed locally before imaging.** Ask for an ultrasound or MRI first.

How it can affect day-to-day life

The diagnostic delay is the recurring story, and it is usually months. Lumps get watched, X-rays get reported as normal for soft tissue, and bone pain in a teenager is treated as sport.

The single most useful advocacy is insisting on imaging before excision, and on referral to a specialist centre if imaging is worrying.

Treatment often means major surgery, sometimes with reconstruction, plus radiotherapy and chemotherapy depending on type, and limb-sparing surgery has largely replaced amputation.

Rehabilitation after limb surgery is prolonged and needs physiotherapy and occupational therapy.

Because it is rare, people often meet clinicians who have never treated it, and local support networks are thin. The specialist centre's clinical nurse specialist becomes the essential contact.

Follow-up is long, because recurrence and lung metastases can occur years later, and chest surveillance is part of it.

For teenagers and young adults, age-appropriate cancer services exist and are worth asking for.

Supporting someone well

Use the size rule: a lump over 5 centimetres, deep, growing or painful needs urgent imaging.

Do not let a suspicious lump be removed before an ultrasound or MRI.

Ask for referral to a specialist sarcoma centre; outcomes are better there.

For persistent night bone pain in a child or young adult, ask for an X-ray and do not accept growing pains.

Ask for the sarcoma clinical nurse specialist's contact.

Ask about age-appropriate services for teenagers and young adults.

Ask for physiotherapy and occupational therapy for rehabilitation.

Keep the long-term follow-up, including chest surveillance.

Mention previous radiotherapy or a family history of cancer.

Where to get help

A GP practice for urgent referral and imaging.

A specialist sarcoma centre, of which there are designated units across the UK.

Macmillan Cancer Support on 0808 808 00 00.

Cancer Research UK for information on the subtypes.