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. The team can offer treatment and support. 

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 
• Doing more physical activity 
• Using complementary therapies 

Possible late and long-term effects of treatment include:

• Tiredness
• Hernia
• Nerve damage
• Changes in bowel function
• Changes in sexual function
• Changes in bladder function

Hernia

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 wound. Some people develop a hernia around their stoma (para-stomal hernia). Others may 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.

To help prevent a hernia, avoid lifting anything heavy for up to three months after surgery. Once you have recovered from surgery, ask your healthcare team about abdominal exercises to build up your core (abdominal) muscles. They may also advise you to wear a support belt or garment.

If you have a hernia, you may not need any treatment or your healthcare team may offer you surgery to repair it.

Nerve damage

The chemotherapy drug oxaliplatin can damage the nerve endings in the hands, feet and lower legs. This is called neuropathy. In some people, neuropathy can last for months or years after treatment. You may get pins and needles, weakness or numbness. 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.

You may get neuropathy symptoms during your chemotherapy cycle and for up to two weeks afterwards. Symptoms may improve once you finish treatment but in some people, neuropathy can last for months or years after treatment.

Tell your healthcare team if you have any symptoms of neuropathy. If the symptoms are affecting your daily life, your doctor may suggest lowering the dose of oxaliplatin or changing your treatment.

Bladder function

Surgery for rectal cancer can affect the nerves to the bladder. You may not be able to fully empty your bladder and you might 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. 

More information

Bladder and Bowel Community gives information and sells products for people with bowel and bladder problems. They have a free ‘just can’t wait’ card or mobile app, to help you explain you need to use a toilet quickly.

Colostomy UK and Ileostomy and Internal Pouch Support Group have information on stoma reversal, hernias, products and clothing for people with a stoma and the National Key Scheme (RADAR) that gives access to toilets for disabled people across the UK.

Macmillan Cancer Support provides information on long-term and late side effects of treatment

Pelvic Radiation Disease Association is a patient-run charity providing support and information for people who have had pelvic radiotherapy.

The Sexual Advice Association gives practical tips in its booklet, ‘Sex and intimacy for cancer patients’.

Visit our online community to talk about your experiences, share knowledge and get support from other people 

Reviewed September 2019