Worries about the future
When you finish treatment, it can feel like coming off a rollercoaster. The main part is over but you are still feeling ‘wobbly’. You may have been putting all your effort into coping with treatment and now you have the chance to look back at what you’ve been through. At the same time, the regular hospital appointments have come to an end.
You may be facing a number of changes such as treatment side effects and changes to your body, changes to your weekly routine, changing roles at home or work, or possibly a change to your income. There can be positive changes too, like thinking differently about what is important and making more time for things that matter most to you. Keep in mind that it can take a long time to get used to the changes in your body and the way you feel.
Health and Wellbeing events
Some hospitals offer Health and Wellbeing events where you can get information from healthcare professionals on managing your health and wellbeing after treatment. You may also have the chance to meet other people in a similar position to you. Ask your healthcare team if there are any events in your area.
Holistic needs assessments
Your hospital may also offer ‘holistic needs assessments’. These help to find out what practical, physical, emotional or spiritual needs you have. Your healthcare team may refer you to other local services, if you need them. Your specialist nurse can tell you if these assessments are available in your area.
Long term changes in bowel habit
Regaining bowel control can be one of the biggest challenges that you face after treatment for bowel cancer. It may take you longer to adapt to changes if you are having chemotherapy or radiotherapy after surgery. It is normal for your bowel function to be erratic and difficult to control for several weeks or even months. However, if your bowels really aren’t settling into a new routine or you are struggling to put on weight, do talk to your GP or colorectal nurse.
Find out more about bowel habit changes after treatment.
Where to get support
Most people gradually feel stronger over time. But feeling worried about follow up appointments or about the cancer coming back is normal.
If you are finding it difficult to cope, contact your GP or specialist nurse for help and advice. They may suggest you speak to a counsellor or clinical psychologist for further support.
Other people who have had cancer can be a great support and there are several ways of getting in touch. You might find our online forum helpful or you could join a local support group.
Your healthcare team will offer you regular follow up appointments after you finish treatment. This is to check that the cancer hasn’t come back or spread and to check how you are coping physically and emotionally. If the cancer does come back, then regular checks will increase the chance of it being picked up early.
Your follow up appointment
Your follow up appointments may be with a specialist nurse or doctor, at the hospital or over the phone. Your nurse or doctor should ask you about your bowel function, weight, appetite and your stoma, if you have one.
You can use these appointments to tell the doctor or nurse if you are having trouble coping or if you need extra support.
When you have your appointment, you might want to take:
- a list of questions you’d like answers to
- your latest medicines prescription
- spare stoma appliances, in case your doctor needs to examine your stoma
- a friend or relative for support
Your specialist nurse or GP will be able to help you if you have any questions or worries in between your appointments.
You will have follow up appointments for as long as you and your doctor feel they are useful and the risks of the tests aren’t greater than the risk of the cancer coming back. This is usually for up to five years after your treatment ends.
Follow up tests
You may have a blood test to check the levels of a protein called CEA (carcinoembryonic antigen). Regular tests after your treatment can show if the cancer has started to grow again. It’s not a perfect test and other things, such as smoking and non-cancerous bowel conditions, can increase your CEA level. But, for some bowel cancers, it can give a good idea of whether your treatment is working.
You may have two or more CT scans in the five years after you finish treatment. You may also have a colonoscopy between one and three years after your treatment ends and then every five years. This is to check for growths (polyps) and to lower the risk of any new cancers developing in the colon or rectum.
Your hospital team will follow local guidelines to ensure that you continue to be monitored in the most appropriate way for you. Hospital Trusts have introduced differing levels of follow up. Increasingly, suitable patients will be given the chance to opt in to ‘self-managed’ or ‘remote’ follow-up. This means that for low risk patents there will be no face-to-face appointments unless problems arise; only patients with complex problems will be required to come back to see the hospital team.
Getting test results
The doctor or nurse will give you your test results at your follow-up appointments. They will explain how your results affect your future care and the risk of the cancer coming back. If they do not give you this information, you should ask for it.
Questions to ask
- What are the chances of the cancer coming back?
- What symptoms should I look out for that might show the cancer has come back?
- Who should I contact if I notice any new symptoms?
- What long term or late side effects might I get?
- Where can I get help with dealing with side effects?
- Are there any Health and Wellbeing events that I can go to?
- Do you offer a holistic needs assessment?
The British Association for Counselling and Psychotherapy (BACP) gives information on counselling and how to find a counsellor.
Macmillan Cancer Support provides information on emotions.
Maggies offers emotional and practical support on their website and at their centres.
Updated August 2018. Due for review March 2019