Patients & Families

Bladder cancer: Understanding late effects of radiotherapy

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

Bladder cancer: Understanding late effects of radiotherapy

Late side effects may happen a few months or years after treatment. They might happen once, carry on over the long term or come and go. Sometimes they cannot be cured, but it might be possible to manage them.

You might have late effects not listed here, because everyone is different. They may also be caused by a different part of your cancer treatment. It is not possible to predict if you will get them and when they might happen, which can be difficult to come to terms with. Research and support for late effects of radiotherapy is growing.

Joining a support group can be a positive way to share your experiences, feel less alone, and come to terms with the physical and emotional impact of treatment. Ask your clinical team if you need more support or have any late effects at all.

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, and you can ask questions and discuss any concerns you have about late effects.

You can read different radiotherapy consent forms based on the specific area being treated by clicking here. These consent forms are packed with useful information about early and late side effects.

When you consent to treatment, you are saying you understand that you have a chance of getting late side effects. Your team will use words like Expected, Common, Less Common and Rare.

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

  • Effects on the bladder: Sometimes, the bladder can become smaller after radiotherapy. This means you might need to wee more often in the long term.

If your bladder works well before treatment, this is less likely to be a problem.

  • Effects on the bowels: Your bowels might change after treatment. You might feel the need to use the toilet more often or have constipation or loose poo.
  • Lymphoedema: You might have swelling in the legs or lower body due to fluid buildup.
  • Cancer-related fatigue: You might find you still have fatigue after your treatment has finished. For some people this can go on for months or years.
  • Fertility: Your reproductive organs (listed below) may be in or near the treatment area. Be sure to ask if this affects you. If it does, it’s important to discuss any plans or thoughts you have about having children from the outset. Your consultant can provide advice tailored to your situation. This can be a sensitive topic, and you may not have all the answers yet, but having the conversation early allows you to explore your options and make informed decisions.

Reproductive organs include: ovaries, uterus, fallopian tubes, cervix, vagina, penis, testes, scrotum, prostate gland, urethra, and vas deferens

  • Early menopause: If your ovaries are in or near the treatment area your periods might stop earlier than usual, and you might go through an early menopause. Your medical team can help with symptoms of early menopause.

Rare or less common side effects

  • Second Cancer: There is a very small chance that you could develop another type of cancer. This small risk is also from all the X-rays and scans you have had over your life, and natural exposure to radiation around us. The chance of this happening is about 0.5 – 1% over 10 years.

What can help with these late effects?

  • Bladder care: Keep drinking water and talk to your doctor if you have trouble with weeing.
  • Bowel health: Professional advice on what food and drink to have can help. So can medication. Speak to your treatment team about any bowel changes and watch for any signs of blockage.
  • Managing lymphoedema: Special exercises and treatments can help reduce swelling. Ask to speak to a lymphoedema specialist if this is a concern.
  • Monitoring rare side effects: Talk to your medical team as soon as you notice any changes, this can help catch and treat any serious problems 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.
  • 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.
  • Keeping active: Gentle movement can help you feel better, both during and after treatment. Your treatment team can tell you what is safe for you to do.
  • 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 medical team about any late effects you have. Even if they are not mentioned here. Everyone is different and experiences treatment differently.  There may be ways they can help you reduce or manage symptoms.

Further information

Learn more about side effects and support here:

Pelvic Radiation Disease Association

Bladder cancer support forum | Macmillan Online Community

Maggie’s | Everyone’s home of cancer care

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 LGBTIQ+ support around cancer treatment and sex:

Sex and Cancer – OUTpatients

Learn more about sex and cancer here:

Pelvic radiotherapy for women | Sexuality and cancer | Cancer Research UK

NHS general advice:

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

NHS stop smoking services help you quit – NHS

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

Managing and treating cancer fatigue | Cancer Research UK

Cancer-related fatigue | NHS inform

 

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