Patients & Families

Sarcoma cancer: Understanding late effects of radiotherapy

The following content contains images and descriptions of cancer treatment that some people may find upsetting or triggering.

Late side effects can appear months or even years after treatment. They may be short-term, long-lasting or come and go. Some late effects cannot be completely cured, but they can often be managed.

Not everyone will experience the same effects and they might be related to other parts of your cancer treatment. It is hard to predict if or when they will happen which can be challenging to accept. However, research and support for managing late side effects of radiotherapy are improving.

Joining a support group can help you share your experiences, feel less isolated, and cope with the physical and emotional effects of treatment. If you need more support or are experiencing any late effects, talk to your clinical team.

  • The late effects you may experience depend on the area of your body being treated, the type of radiotherapy and which tissues or organs are affected by the treatment.
  • For example, if you’re receiving radiotherapy for sarcoma on your hip, the treatment may affect your pelvic area. Your treatment team will carefully plan your radiotherapy to minimise side effects.

This page looks at late side effects.

How likely am I to get late side effects?

Before treatment you will discuss and sign a consent form with your clinical oncologist or therapeutic radiographer. They will tell you what to expect, answer your questions and discuss any concerns you have.

You can access different radiotherapy consent forms based on the specific area being treated by clicking here. These forms contain useful information about potential early and late side effects.

When you consent to treatment, you are agreeing there is a chance of getting late side effects. Your team will use words like Expected, Common, Less Common and Rare to explain what the chances are.

This table shows what these words mean.

Wording on the consent form % chance of side or late effect How many patients will get this?
Expected 50 to 100% Between half and all patients
Common 10 to 50% Up to half of all patients
Less common Less than 10% Fewer than one in ten patients
Rare Less than 1% Fewer than one in 100 patients

Possible late side effects

  • Stiffness: The treated area may become stiff or hard.
  • Lymphoedema: Swelling caused by fluid build-up can happen, especially in the legs and arms. If your sarcoma is in the leg, swelling may occur below the treatment area, including your foot. If it is in the arm, your hand may swell. Surgery can also cause this. While the swelling may not go away completely, there are ways to manage it.
  • Cancer-related Fatigue: You may still feel tired after treatment. For some, this can last months or even years.

Rare or less common late effects

  • Second Cancer: There is a very small chance that you could develop another type of cancer. This is rare, and depends on lots of different factors like age, area treated and radiation dose.
  • Weaker Bones: If the treatment is on a limb, like your arm or leg, it may slightly weaken the bone, making it easier to break.

What can help with these late effects?

Sarcoma can appear anywhere in the body. Check our other resources for side effects based on the area where you’re being treated.

  • Staying Active: Gentle exercise can help you feel better during and after treatment. Your treatment team can guide you on what’s safe for you. If you have treatment around ON? your legs and arms, ask for a referral to a physiotherapist so they can support you with your mobility and any stiffness.
  • Bladder care: If your treatment is near your pelvis and bladder, keep drinking water and talk to your doctor if you have trouble with weeing.
  • Bowel Health: Eating the right foods and taking medication can help with bowel issues. Speak to your team about any changes or signs of blockage.
  • Managing Lymphoedema: Special exercises and treatments can reduce swelling. Ask to see a lymphoedema specialist if needed.
  • Monitoring Rare Side Effects: If you notice any changes, tell your treatment team right away. This helps catch serious issues early.
  • Managing Fatigue: Eating well, staying active, keeping a fatigue diary and trying medicines or physiotherapy might help. Talk to your doctor or clinical team for advice.
  • Drinking Fluids: Stay hydrated with water or diluted juice to help with fatigue and flush out toxins.
  • Skin Care: The treated area will be more sensitive to the sun. Always protect it by covering up and using high-factor sunscreen.
  • Seek help: If you experience any late effects, even those not mentioned here, speak to your doctor or treatment team. Everyone’s experience is different and they can help you manage your symptoms.
  • Alcohol use: Please follow the NHS guidelines on safe drinking levels and any instructions you get from your team on what is right for you, your diagnosis and your treatment. If in doubt, please ask your team.
  • Stop smoking: If you are looking to stop or reduce smoking, there are services available to help you. Please see the links at the bottom of this page for more information.

Always talk to your doctor or clinical team about any late effects you have. Even if they are not mentioned here. Everyone is different and experiences late effects differently. There may be ways they can help you reduce or manage symptoms.

Further information

https://sarcoma.org.uk/about-sarcoma/

Learn more about radiotherapy consent forms here:

https://www.rcr.ac.uk/our-services/management-service-delivery/national-radiotherapy-consent-forms/

Learn more about radiation skin reactions here:

https://www.sor.org/getmedia/1579daa1-4f35-4f4d-86a6-902a3e2b0480/5056_-_sor_design_doc_a_patient_infosheet_-_skin_care_a5_leaflet_z-fold_printready.pdf

Learn more about managing cancer fatigue:

Managing and treating cancer fatigue | Cancer Research UK

Cancer-related fatigue | NHS inform

Advice and support on reducing alcohol use:

Drink less – Better Health – NHS (www.nhs.uk)

NHS stop smoking services:

NHS stop smoking services help you quit – NHS

Water, drinks and hydration – NHS (www.nhs.uk)

 

 

 

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