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 read different radiotherapy consent forms (HERE) based on the specific area being treated. These consent forms are packed with useful information about early and late side effects.(1)
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 cancer-related fatigue: Food and drink, keeping active, keeping a fatigue diary, medicine like steroids and physiotherapy may all be options for managing fatigue. Speak to your doctor or medical team for advice; and learn more about managing cancer-related fatigue.
- Drinking fluids: Drinking plenty of fluids such as water and squash can help with fatigue and tiredness caused by your treatment. It can also help flush out toxins in your body caused by treatment. You can try diluted juice if you don’t like water.
- 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.
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:
