Your guide to surveillance follow up after colorectal cancer.

Introducing follow-up care tailored to you

In the past, it has been traditional for patients who have completed their treatment for colorectal cancer to be seen at regular intervals by their clinical nurse specialist, surgeon or oncologist for follow-up purposes. Although some patients find these prearranged visits useful and reassuring, many can find these hospital visits a source of great anxiety and not particularly helpful, unless they have a particular concern that they wish to discuss. There is now very good evidence to show that following-up patients in this way does not prevent cancer returning and does not increase life expectancy. Like many other surgical units in other parts of the UK, the Yeovil surgical team now uses a new system that allows you to arrange follow up appointments as and when you need them.

What is a personalised follow-up plan?

A personalised follow-up plan puts you in control of your hospital follow-up. You will no longer be given routine follow up clinic appointments at regular pre-set intervals. Instead you will simply be able to contact the colorectal nurse specialist directly to arrange a follow up appointment as and when you feel concerned that you might need to be seen in clinic. You will continue to have your surveillance CT scans, blood tests and colonoscopies, but will need to contact us directly, or see your GP, if you have any concerns or notice anything unusual.

Health and wellbeing clinic

On completion of your treatments you will receive an appointment to attend a health and wellbeing clinic. This is an education and support session to give you information about adjusting to life after treatment. This will include talks on subjects such as; nutrition and dietary advice, physical activity, coping with altered bowel function, the emotional impact of cancer treatment, financial and benefit advice, and what the signs and symptoms of recurrence are. This clinic is aimed at helping you to feel more confident at managing your colorectal cancer follow-up with our support.

Blood tests

You have been issued with a personalised plan which includes several pre-completed blood forms so that you can have a blood test taken at regular intervals. The blood test can be performed either at your GP surgery (make an appointment with the practice nurse) or in the Yeovil Hospital phlebotomy department (situated in the outpatients department, level 3).

The blood test will check your full blood count (to check for anaemia), liver function and kidney function. A test is also performed for a CEA which is a specific bowel tumour marker. We will check the results at the end of the month and will write to you with the results, along with details as to when your next test is due.

If any abnormalities are detected, we will telephone you with details and to inform you whether any further action needs to be taken, either in the form of further tests or appointments. If you do not hear from us by the middle of the following month after your blood test, please do not hesitate to contact the department on 01935 384 367 where we can look up the results for you

CT scans

Your personalised plan specifies when your surveillance CT scans are due. This test checks for any disease recurrence in the bowel and surrounding organs (liver and lungs specifically).

The radiology department will send you an appointment or your scan approximately two weeks before the test is scheduled to be performed. If you do not receive this appointment at the specified time, it is important you notify the colorectal department on 01935 384 367. If you cannot attend your appointment, you will need to telephone the x-ray appointments clerks on 01935 384 576.

We will check the results at the end of the month and will write to you with the results, along with details as to when your next test is due. If any abnormalities are detected, we will telephone you to make an outpatient appointment for review and to give you details of any further tests that need to be performed.

If you do not hear from us by the middle of the following month after you have had your CT scan, please do not hesitate to contact the department on 01935 384 367 where we can look up the results for you.

Colonoscopies

Unless otherwise specified in your personalised plan, you will be offered surveillance colonoscopies at one year after surgery, five years after surgery and then five yearly. If you do not receive this appointment within six weeks of the dates specified it is important you contact the colorectal department on 01935 384 367.

Some people choose to only undergo colonoscopies if they are symptomatic and this option can be discussed with your colorectal nurse specialist. Please contact us for a review if you are unsure whether you are fit enough for this test, as you will need to have a strong laxative beforehand. You can also contact us if you wish to discuss the risks and benefits of colonoscopies in more detail. This test checks your bowel for any further polyps, abnormalities or signs of cancer recurrence.

The endoscopy booking clerks will send you an appointment for your scope a few weeks before the test is scheduled to be performed. If you cannot attend your appointment, you will need to telephone the endoscopy department on 01935 384 793.

You may be told the outcome at the appointment otherwise you will receive a letter with the results if any biopsies are taken for analysis. If any abnormalities are detected, we will telephone you with details and to inform you whether any further action needs to be taken.

If you do not hear from us by the middle of the following month after you have had your blood test, please do not hesitate to contact the department on 01935 384 367 where we can look up the results for you.

What do you do if you have any worries or concerns?

The risk that your cancer will come back is different for every patient. Whilst the aim of treatment is to cure you, the aim of surveillance is two fold. Firstly, it is to detect any recurrence of the cancer early, so further treatment can be given as soon as possible. Secondly, surveillance is also aimed at helping you to adjust to life after cancer treatment and cope with any side effects you may have. Your personalised follow-up plan will detail the best tests to achieve this, and the well-being event will also give you more information to help.

As previously stated, If you develop new symptoms or have any anxieties or questions, you should contact the colorectal department on 01935 384 367 (or via email) so that you can be reviewed promptly in the clinic and any extra tests or scans can be organised for you.

It is entirely natural to feel anxious about whether your cancer will return and we recognise that this can make you feel very uncertain about the future and lead to difficulties in “getting on with life”. Some people find it useful to have some additional support in dealing with these feelings and benefit from counselling. This may be available from your GP, or alternatively you can speak with the colorectal nurses who can reassure you or refer you on to other services.

Further information and useful contacts

For details of a wide list of support contacts and literature related to your colorectal diagnosis and follow up, please refer to your blue patient diary. This contains information about national and local charities, support groups and literature available to you.

If you cannot find what you are looking for, please do not hesitate to contact the colorectal/stoma care department on 01935 384 367 or email colorectalnurses@ydh.nhs.uk

What sort of symptoms do I look out for?

If you experience any of the following symptoms , please contact us to arrange a medical review:

Bleeding from the bottom or blood in your poo. Passing excess slime/mucus from your bottom. NB – If you have a stoma you should also look out for bleeding into the bag (but bleeding from around the edge of the stoma is normal).

  1. Any change in bowel habit that lasts for four weeks or more, especially if you are going to the toilet more often or experiencing unexplained looser poo.
  2. Unexpected constipation alternating with diarrhoea and a feeling of fullness or incomplete emptying from your back passage (rectum) after you have used the toilet.

Any constant, unexplained pain anywhere in the abdomen, especially if it is severe. It may also be linked to going to the toilet, or may come and go like cramps or colic.

An unexpected persistent lump in your abdomen/rectum, especially if it is on the right hand side.

Unexpected weight loss perhaps due to loss of appetite, or feeling bloated or sick.

Unexplained tiredness, dizziness or breathlessness (symptoms of anaemia).

Please remember that these symptoms do not necessarily mean that you have a recurrence of your colorectal cancer, but if you have one or more of these symptoms you should contact the department on 01935 384 367 or you can email colorectalnurses@ydh.nhs.uk

When should I been seen by the colorectal team?

If you experience any new medical symptoms that you are worried about, that could represent a recurrence of your cancer (see symptoms above) you should phone the colorectal/stoma care department urgently so that an appointment can be arranged for you within two weeks.

Other anxieties, concerns or symptoms can also be dealt with either over the phone or in a less urgent clinic appointment. Please contact us for any of these reasons, or if you just need more support, by contacting:

Telephone: 01935 384367
Email: colorectalnurses@ydh.nhs.uk

Please leave a brief message and a contact telephone number on our answer phone or with our secretary. You will be contacted by one of our team within two working days. Your GP can also use this number to contact us if he or she feels that you need to be seen by the colorectal team.

Ref: 03-16-113
Review: 08/18