Long term and late side effects
The side effects of treatment usually get better over time. But some people may have side effects that carry on for more than six months (long-term effects) or that start months or years after they’ve finished treatment (late effects).
Speak to your healthcare team if any side effects are not getting better or if you are having any new problems.
People cope with side effects in different ways. Things that people with cancer say have helped them include:
- Changing their work-life balance
- Focusing on the positive things in their lives
- Improving their diet
- Taking more exercise
- Using complementary therapies
Possible late and long-term effects of treatment include:
- Nerve damage
- Changes in bowel function
- Changes in sexual function
- Changes in bladder function
You can read more about these below.
Extreme tiredness (fatigue) is one of the most common effects of cancer and its treatment. It can feel completely draining and can affect all areas of your life. Fatigue can get worse if you are feeling stressed or low in mood. If you think this is the case, you could ask your healthcare team for help.
The following things can help you cope with fatigue.
- Making a plan of what you want to do each day.
- Doing the most important things first.
- Pacing yourself by taking regular rest breaks, even when you’re having a good day. This can help you feel better in the long-term.
- Trying to keep physically active, even if you don’t feel like it
A healthy balanced diet may also help you cope with fatigue. For more details, read our booklet, Your diet and lifestyle: living with and beyond bowel cancer.
After surgery to your stomach area (abdomen), your muscles will not be as strong as before and you may be at risk of getting a hernia. This is caused by part of your insides pushing through a weak part of the muscle or tissue wall. After surgery for colon or rectal cancer, part of your bowel can push through the area around your scar. Some people get a hernia after having their stoma reversed. You may not have any symptoms but you might notice a slight lump or bulge, especially when you cough or strain the muscle. Some people have some pain in the area.
You may not need any treatment or your healthcare team may offer you surgery to repair the hernia.
The chemotherapy drug oxaliplatin can cause nerve damage (neuropathy) and, in a few people, this can last for months or years after treatment. You may get pins and needles, weakness or numbness in your hands or feet. This can make it hard to do everyday things like writing, picking up small items and walking. Some people become sensitive to the cold and need to wear gloves when they use the fridge or freezer. Your symptoms may get worse before they get better.
Your bowel habit may change after your cancer treatment and you may have:
- More frequent bowel motions
- Looser poo
- Tummy pain
- A feeling that you have not completely emptied your bowel and there is something left behind.
Other people may often need to rush to get to the toilet in time, may have difficulty controlling their bowels or be woken during the night to empty their bowels. These problems may be worse in the year after treatment but can carry on long-term.
If you have had surgery for rectal cancer that avoids a permanent stoma, you may have several of these bowel symptoms. This is a condition called anterior resection syndrome. Radiotherapy increases your risk of getting this syndrome. Your symptoms sometimes get better over six to 12 months but you may find them upsetting and they can affect your everyday life. Speak to your healthcare team if your symptoms are not getting better.
Our information booklet, Your diet and lifestyle: living with and beyond bowel cancer has lots of information on diet, including coping with bowel problems, eating and drinking with a colostomy or ileostomy and losing and gaining weight. It also includes a food and symptom diary to help you find out what foods you react to.
If your bowel problems don’t get better, or if you are having bowel movements at night, ask your GP or specialist nurse about being referred to a continence specialist or a doctor who specialises in problems with the digestive system (gastroenterologist).
If you have a temporary stoma, you will usually have it reversed after you finish treatment. Some people find it can take several months for their bowel habit to return to normal.
Cancer treatment can affect your emotions and your relationships and this can lead to problems with intimacy and sex, whatever your sexuality.
If you have a partner, working together and being open about the effect of treatment on your sex life can help. Whether or not you have a partner, a psychosexual therapist can help you to understand and come to terms with the impact of changes in sexual function on you and on your relationships. Many people find it embarrassing to talk about their sex life but remember that the health professionals you see will be used to dealing with sexual problems every day.
Surgery and radiotherapy for rectal cancer can cause long-term problems getting an erection and problems with ejaculation in some men. These problems may get worse a few years after radiotherapy finishes. Possible treatments include tablets that increase blood supply to the penis, injections to help you get an erection, pellets that you insert into the end of the penis, vacuum pumps and penile implants. The success of the treatment will depend on whether the nerves or blood supply to the penis have been affected by the cancer treatment.
In women, surgery and radiotherapy can cause tightening and shortening of the vagina. This can make sex difficult and painful. Radiotherapy can also cause dryness of the vagina but lubricants can help with this. Regular intercourse or using a dilator after you have completed radiotherapy may help reduce the risk of vaginal shortening.
If you feel you need help with any sexual problems, ask your GP or healthcare team to refer you to a sexual health specialist or psychosexual therapist.
Surgery for rectal cancer can affect the nerves to the bladder. You might not be able to fully empty your bladder and you may leak urine. Radiotherapy can irritate your bladder so you may need to pass urine more often or with little warning. Your healthcare team can give you information on how to manage bladder problems or they can refer you to a continence service.
Bladder and Bowel Foundation provides information on products and services for people with bladder or bowel problems. Produces ‘toilet cards’, which help you explain you have a medical condition that means you need to use a toilet quickly.
Colostomy Association provides support and information to anyone who has or is about to have a colostomy. Includes information on stoma reversal and the National Key Scheme (RADAR) that gives access to toilets for disabled people across the UK.
IA (Ileostomy and Internal Pouch Support Group) is a support group run by and for people with ileostomies and internal pouches.
Pelvic Radiation Disease Association is a patient-run charity providing support and information for people who have had pelvic radiotherapy.
Updated March 2016. Due for review March 2018
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