Living with treatment effects | Sarcoma UK
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Living with treatment effects

This page explains the side effects and late effects of sarcoma treatment. It includes information about getting help, managing symptoms and coping with fatigue.

 

Sarcoma and its treatment can affect your body. Some effects happen during treatment or soon afterwards. Others can last for a long time or develop months or years later.

The effects you have will depend on:

  • the type of sarcoma you have
  • where it is in your body
  • the treatment you have had
  • your general health.

 

Side effects

 

Side effects are unwanted effects that happen during treatment or in the weeks and months afterwards.

Many side effects get better as your body recovers. Some can take longer to improve. Your specialist team can explain which side effects you might have and how to manage them.

Depending on your treatment, side effects can include:

  • tiredness (fatigue)
  • pain or discomfort
  • feeling or being sick
  • changes to your appetite or taste
  • hair loss
  • changes to your skin, such as changes in colour, swelling or itching
  • getting infections more easily
  • diarrhoea or constipation
  • needing to wee more often or having problems weeing
  • pins and needles or loss of feeling in your hands or feet
  • swelling, stiffness or difficulty moving
  • changes to your sleep.

Some people have problems with their wound after surgery. It may be painful or swollen. It may become infected or take longer to heal.

Your treatment team can tell you what to expect and what may help.

One thing I’ve learnt from my experience with sarcoma is that just because you ‘look fine’ on the outside doesn’t mean you feel fine on the inside. So much of what you’ve been through, both physically and mentally, can be invisible to others, especially when your sarcoma is internal, as mine was within my abdomen.

Kimberley, who was diagnosed with uterine sarcoma.

Late effects

 

Late effects are problems that last a long time or start months or years after treatment has finished.

Some side effects continue after treatment. Others may not start until much later. They can affect different parts of your body.

Depending on your treatment, late effects can include:

  • tiredness (fatigue): You may continue to feel very tired, even after treatment has finished
  • pain: You may have ongoing pain in the area where you had treatment.
  • lymphoedema: This is swelling caused by a build-up of fluid. It can affect an arm, leg, or another part of your body. We have more information about lymphoedema
  • changes to your movement or strength: Surgery or radiotherapy can affect your muscles and joints. You may have stiffness, weakness, or find it harder to move
  • changes to your skin and scars: Your skin may feel tight, sensitive or less flexible. You may also have lasting scars or changes in skin colour
  • bone problems: Some treatments can make bones weaker. This can increase your risk of breaking a bone (fracture). Treatment during childhood can also affect bone growth
  • fertility problems: Some treatments can affect your ability to have children. They may also cause early menopause
  • changes to your heart or kidneys: Some chemotherapy medicines and radiotherapy can affect how well your heart or kidneys work
  • hearing changes: Some chemotherapy medicines can cause hearing loss or ringing in your ears (tinnitus)
  • bowel or bladder problems: Depending on where the sarcoma was and the treatment you had, you may have lasting changes to how your bowel or bladder works
  • changes to your memory and concentration: Some people find it harder to remember things or concentrate. This is sometimes called brain fog
  • changes to your sex life: Some treatments can affect your sex life. They may change your desire for sex or make sex uncomfortable.

Some treatments can also increase your risk of developing another cancer in the future. The risk is usually low, but it can be higher after certain treatments. Your sarcoma team can explain if this is something you need to know about.

Can late effects be treated?

Some late effects cannot be fully cured, but they can often be managed. Some get better over time. Others may need treatment or support for longer.

There may be ways to manage your symptoms and make everyday activities easier.

Depending on your needs, you may be offered:

  • physiotherapy to improve movement and strength
  • medicine to help with pain or other symptoms
  • support from a lymphoedema specialist
  • help from a rehabilitation team
  • checks to monitor your heart, kidneys, hearing or other parts of your body.

We have more information about living well with sarcoma.

Getting help with treatment effects

Tell your sarcoma team, specialist nurse or GP if you have any new or ongoing problems after treatment.

Ask for help if:

  • a side effect is not getting better
  • a problem is getting worse
  • you have new pain or swelling
  • you find it harder to move
  • you are worried about any changes to your health.

You may also need regular checks for late effects. These may be part of your follow-up care after treatment. The checks you need will depend on your sarcoma and the treatment you have had.

Managing fatigue (tiredness)

 

Fatigue is common in people with sarcoma. Fatigue is a feeling of tiredness or exhaustion that may not go away with rest or sleep. You may find it harder to work, exercise or do everyday activities.

Fatigue can get better over time, but everyone recovers differently. If tiredness is affecting your daily life, speak to your healthcare team. They can check if something is causing it and help you find ways to manage it.

Fatigue can be a side effect of cancer treatment, such as chemotherapy or radiotherapy. It can also have other causes. Your healthcare team can help you understand what may be making you tired.

You could try:

  • planning rest into each day
  • using a fatigue diary to track your energy levels. Macmillan Cancer Support has a fatigue diary that you can download for free
  • keeping active if you are able to, starting with gentle activity such as walking.

Don’t be hard on yourself and find the right balance for you. I desperately wanted to carry on as normal but found myself getting tired. The normal day-to-day activities were essential for my wellbeing at the time, but you need to also allow time to rest.

Julie, who was diagnosed with liposarcoma.

More Support

 

Call the Sarcoma UK Support Line

The Sarcoma UK Support Line is here for every person affected by sarcoma. Contact us for friendly, expert, confidential and free advice on anything to do with sarcoma.

Support groups

There are a number of sarcoma support groups across the UK. We have more information about support groups available online and in your local area.

Other charities

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Last reviewed November 2026 | Next review due November 2029

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