Worries about the future
When you finish treatment it can feel like coming off a rollercoaster. 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, your hospital appointments may become less frequent, which might mean you feel less supported.
You may be facing a number of changes such as treatment side effects and changes to your body, adjustments to your weekly routine, roles at home or work, or possibly a change to your income. There can be positive differences 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.
Not everyone reacts in the same way after treatment and some people may not experience these types of emotions. There’s no right or wrong way to feel.
Some people find that having a positive attitude helps them cope, but you may also feel under pressure to avoid appearing low or negative. Try not to put too much pressure on yourself.
Health and Wellbeing events
Some hospitals offer health and wellbeing events where you can get information on coping with daily life after treatment. It’s also a 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 could use an online forum or join a local support group.
Your healthcare team may offer you regular follow up appointments after you finish treatment. This is to find out how you are coping physically and emotionally. If you had treatment to cure the cancer, your team will check the cancer hasn’t come back or spread. If there is a risk of the cancer coming back, regular checks will increase the chance of it being picked up early.
Your follow up appointment
Your follow up appointments may be with a doctor or specialist nurse at the hospital. At your appointment, your doctor or nurse should ask you about your bowel function, weight, appetite and your stoma, if you have one. If they don’t ask, remember to tell them about any problems you’re having. Tell the doctor or nurse if you’re having trouble coping or if you need extra support.
Some hospitals offer follow up appointments that are tailored to you and your needs. This is sometimes called supported self-management. This means you may be able to have telephone appointments instead of going to the hospital if you’re feeling well and there’s a low risk of your cancer coming back.
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 family member for support
You will have follow up appointments for as long as you and your doctor feel they’re useful.
Follow up tests
You may have a blood test to check the levels of a protein called CEA (carcinoembryonic antigen). It’s not a perfect test and other things, such as smoking and non-cancerous bowel conditions, can increase your CEA level. However, for some bowel cancers, it can give a good idea of whether your treatment is working.
You may have two or more computed tomography (CT) scans in the three years after you finish treatment. Current guidelines recommend that you should have a colonoscopy a year after treatment ends and then every few years to check for growths (polyps) and any new cancer developing in the bowel. Ask your doctor when you will have these checks and how often.
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.
Getting test results
A doctor or nurse will give you your test results at your follow up appointments. You may find this a stressful time, but your healthcare team will answer any questions you have and can offer you support. 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 can ask for it.
Questions to ask
- What are the chances of the cancer coming back?
- How and when will you check to see if the cancer has come back or spread?
- What symptoms should I look out for that might show the cancer has come back or spread?
- Who should I contact if I notice any new symptoms?
- Who should I contact if symptoms don’t go away?
- What long-term or late side effects might I get?
- Where can I get help with dealing with side effects?
- Where can I get support to make lifestyle changes such as stopping smoking, being more active or making changes to my diet?
- Who do I contact if I’m feeling upset or low?
- 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 2019