Colorectal cancer follow-up after treatment
'Follow-up' means what happens after you finish your cancer treatment, and how we support you.
Your follow-up is part of your personalised cancer care. Personalised cancer care is about giving you care and support that are important to you.
This means that your care after treatment is known as personalised follow-up, or PFU.
Your colorectal team has carefully planned your follow-up care. You can contact the colorectal clinical nurse specialist (CNS) team at any time during your follow-up if you have any concerns.
Personalised follow up
After your treatment, you might be offered personalised follow-up (PFU).
PFU is sometimes called:
- personalised stratified follow-up (PSFU)
- patient initiated follow-up (PIFU)
- open access follow-up (OAFU)
- supported self-management (SSM)
You do not need to remember all these terms. They are all ways to describe planned care after treatment for cancer. We'll explain how things will work for you.
End of treatment clinic
After your treatment, we invite you to an end of treatment clinic. At this clinic, you can talk about your follow-up with your nurse.
You fill in a holistic needs assessment (HNA). This is a questionnaire that asks you about your needs and what matters to you. Your needs might be physical, practical, emotional or social.
The HNA helps your team to make a care plan. It makes sure that your needs are met and that you have all the support you need.
We give you a treatment summary. This explains:
- the treatment that you had
- any possible side effects
- signs and symptoms suggesting that the cancer might have returned
We send a copy of the treatment summary to your GP and you can keep a copy.
Tests during follow-up
After you have finished your treatment, you need to have 3 main tests over 5 years.
- A CEA test is a blood test that checks your carcinoembryonic antigen (CEA) levels. CEA is a type of protein in the body. Some colorectal cancers produce CEA.
- A colonoscopy is a test to check the inside of your bowel. You do not need this test if all of your large bowel has been removed.
- A CT scan creates detailed pictures of the inside of the body.
We send you a letter when you are due to have a test.
Your end of treatment summary has more details about the tests and when they are due. We give you this summary at your end of treatment clinic appointment.
Some people are diagnosed with Lynch syndrome. This is an inherited condition that increases your risk of colon cancer and several other cancers. If you have Lynch syndrome, you may need more regular colonoscopies. Your CNS can talk to you about this.
Macmillan Cancer Support has information about Lynch syndrome.
You get your test results in a letter through the post if everything is normal. If there are any concerns, your colorectal care team phones you.
The effects of treatment, such as surgery or radiotherapy, can sometimes make it difficult for us to read the results. We might ask you to come back to the hospital to have more tests or scans. If this happens, we will phone you.
It's important to make sure we have your correct address and telephone number.
If you do not get your results 4 weeks after having your tests, please call the colorectal clinical nurse specialist (CNS) helpline on 020 7188 2564.
Quality of life survey
Measuring people’s quality of life is about understanding:
- how cancer has affected them
- how well they are living after their diagnosis
This includes people’s emotional or social wellbeing, finances and ongoing physical problems, such as tiredness and pain.
NHS England sends you a survey by email or post 18 months after your diagnosis. Please complete the survey to tell us how cancer might have changed your quality of life.
The survey results help us improve how we support people to live as well as possible. Completing the survey can also help you to talk about the support that you need with your team.
5 years after treatment
After your follow-up, we send you back to the care of your GP. If you are eligible, you can also take part in your local NHS bowel screening programme.
NHS bowel cancer screening checks to see if you could have bowel cancer. It's currently available to everyone aged 60 or over and 56-year-olds. The NHS is gradually extending the age range for the bowel screening programme.
You use a home test kit, called a faecal immunochemical test (FIT), to collect a small sample of poo. This is sent to a laboratory. They check the sample for tiny amounts of blood.
For more information, you can call the free bowel cancer screening helpline on 0800 707 60 60.
When to contact your colorectal team
You can contact your colorectal care team on the CNS helpline at any time during your follow-up.
Phone 020 7188 2564, Monday to Friday, 9am to 5pm.
You can contact them to arrange a call back or an appointment. This is a chance to talk about any new symptoms, the side effects of treatment or other concerns.
When you call the helpline, you can leave a message and ask to be called back. A specialist nurse returns your call by the end of the next working day. If they feel that it would be best for you to come back to the hospital, we will give you a clinic appointment.
Your colorectal care team gives you information about the support available to you. Your GP can also tell you about support in your local area.
Bowel Cancer UK has information and support for everyone affected by bowel cancer.
Cancer Research UK gives information and support to anyone affected by cancer. Call the free nurse helpline on 0808 800 4040 (9am to 5pm, Monday to Friday).
Cancer Care Map helps you to find cancer support services in your local area.
Cancer Wellbeing London has information about health and wellbeing workshops and support across London.
Citizens Advice gives free, confidential information and advice to help you with financial, legal and other issues.
Dimbleby Cancer Care has a cancer information and support drop-in service. This service is based in the Welcome Village at the Cancer Centre at Guy's, and the Dimbleby Macmillan Support Centre at Queen Mary’s Hospital.
Macmillan Cancer Support gives practical and emotional information and support (online or over the phone). This includes financial information and support with work. Call the free Macmillan Support Line on 0808 808 00 00 (7 days a week, 8am to 8pm).
Shine Cancer Support gives support to young adults in their 20s to 40s who are affected by cancer.
Trekstock supports young adults in their 20s or 30s who are affected by cancer.
Working With Cancer offers coaching, training and advice for employees, employers, the self-employed, job seekers and carers. This can help you to manage cancer and work.