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. It’s important to know what you are consenting to and can help to take someone with you.
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 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
- 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.
- 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. You may also develop a sudden urgency \ need to go this is common.
- 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.
- Changes in ejaculation: This can be a smaller amount, dryer, a different texture and have some blood in it.
- Unable to get and/or keep erections: Treatment may affect your ability to get and keep an erection.
- Shrinkage or scarring of the vagina: This may impact vaginal intercourse, and the comfort and quality of a having a vaginal examination. Your team might recommend that you use vaginal dilators after treatment to reduce the risk.
- Loss of orgasm: You might be unable to have an orgasm as you used to.
Rare or less common side effects
- Cystitis/pain: You might have pain when you wee due to bladder inflammation.
- Urinary incontinence: You might find some wee comes out when you cough or strain.
- Incomplete emptying of your bladder: This means feeling like you still need to have a poo, when you have already had one.
- Urinary stricture: This is a narrowing of your water pipe. Sometimes it needs to be fixed with surgery.
- Bleeding: This can be from your bladder or bowel.
- Bowel changes: You might need to poo more often (frequency) or feel an urgent need to poo (urgency). Your poo might be more watery and have more mucous; and you might have more wind.
- Inflammation: of your bottom (rectum) can cause pain when you have a poo. This may also affect your sex life if you receive anal sex.
- Intermittent stomach area (abdominal) discomfort: You might have more pain and discomfort.
- Pelvis and hip bone thinning: This can increase your risk of bone fractures.
- Bowel and bladder damage: Sometimes this needs surgery due to a tear (perforation) or fistula (abnormal connection between two parts of your body), bowel obstruction (blockage) or severe bleeding.
- 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.
If your pelvic lymph nodes are treated there are some rare side effects that may also affect you.
- Lymphoedema: This is where fluid can build up in areas like your legs and sometimes, your scrotum.
- Malabsorption: You might have problems absorbing nutrients from your food.
- Neuropathy: Damage to nerves can cause pain, numbness, or weakness in your legs.
What can help with these late effects?
- Bladder care: Keep drinking water and talk to your doctor if you have trouble with weeing. Pads can help with any leaks.
- 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. Pads can help with any leaks.
- 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; 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. 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.
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 radiotherapy consent forms (HERE).
