Awaiting Your Diagnosis and Colorectal Pathway

Please note, this page is printable by selecting the normal print options on your computer.

Information about your Key Worker:
This booklet has been given to you by your doctor or colorectal nurse specialist, as you have been told that there is an area of concern within your large bowel. It may be necessary for further
investigations to be arranged, if this is the case these will be discussed with you. We recognise this is a worrying time for you and your family/carers.

The colorectal specialist nursing team is: Karen Jones, Kate Knight, Sheila Morey and Riya Antony.

The colorectal specialist nurse that you saw today is:

This nurse will be your “key worker” responsible for co-ordinating your care, however any of the colorectal specialist nurses will be happy to help and assist you at any time.

You can contact the colorectal specialist nurses for further information or advice between: Monday to Friday 08.30am to 4.00pm. Telephone: 01908 996953. Should we be unavailable please leave a message on our answer phone or with the Colorectal administrator Debbie Smith.

It should be remembered that a colorectal specialist nurse has undergone specialist training and is available to offer advice and support to you and your family and/or your carers throughout your
treatment. Please contact them if you have any questions or worries, and they will try and resolve these.

Your Feelings and Anxiety:
We recognise that waiting for test results can be a worrying time and the following may be help you:

■ Bring a friend or family member to your appointments because they will be able to help you to remember what is said and can help you to remember to ask any questions you may have.
■ Bring this booklet with you and use it to make notes. Maybe write down questions in the booklet as you think of them, that way you will remember to ask them in clinic. Talking about your feelings to the doctors and nurses who are looking after you can often help to clarify your own thoughts, and this also gives them an opportunity to understand how you are feeling.

What Type of Investigations You May Need:
To help find the cause of your symptoms and to determine any possible diagnosis of cancer, you may have to undergo some of the following investigations:

A colonoscopy examines the whole of the large bowel. It will allow us to understand the presence of any abnormalities and provide information about its size and position. It is a painless procedure
which only takes a few minutes, but it may be necessary for you to be admitted to the hospital for the day to complete this procedure. If your doctor requests this examination, a separate leaflet will be made available to you.

CT Scan (Computerised Tomography)
A CT scan takes a series of x-rays, which build up a 3D picture of the inside of your body. The scan is painless and takes between 10 to 30 minutes to complete. If you need to have this examination more detailed information will be sent to you with your appointment.

MRI Scan (Magnetic Resonance Imaging)
This scan is similar to a CT, but uses magnetism instead of x-rays to create the images and looks at soft tissue, muscles, nerves and bones etc. It gives very detailed pictures which can help to decide the initial staging of the cancer and provides useful information in planning treatments. If you need to have this examination, more detailed information will be sent to you with your MRI
scan appointment.

PET Scan (Positron Emission Tomography)
This scan shows us how the tissues are functioning and identifies the organs or tissues that are not working normally. If you need to have this examination, more detailed information will be sent to you with your appointment. This procedure is completed at the Churchill Hospital Oxford.

Other tests
If you do require an operation you will be asked prior to the date of your operation to attend an appointment with a pre-operation assessment nurse. This may require additional tests and
investigations to be completed including, blood tests, chest x-ray and an ECG (heart tracing).

What happens when all the results are back, and a diagnosis is made?
In line with the National Guidelines all patients are discussed by the Colorectal Multi-Disciplinary Team (MDT).

This team consists of:
■ Colorectal Surgeons
■ Oncologists
■ Radiologists
■ Pathologist
■ Gastroenterologists
■ Specialist Nurses

This meeting allows input from all relevant specialists, so that the best possible treatment plan can be agreed. The Colorectal MDT meeting is held every Thursday, and each patient is discussed before treatment with their staging results and following treatment with their biopsy/ histology result. As part of the MDT process each patient is allocated a key worker, whose role is to co-ordinate care and promote continuity, mainly by being available as a point of contact for information and advice.

Your Key Worker’s contact details are on the inside cover of this booklet.

What treatment will you receive?
A treatment plan will be agreed at the Multi-Disciplinary Team (MDT) meeting and will be discussed with you by your consultant. You will be contacted as soon as possible with an appointment to come and discuss your results with your Doctor or specialist nurse. Any alternative treatments will also be discussed, and you will have as many opportunities to discuss your diagnosis and treatment as you require. As part of your investigations we need to be able to target your treatment. Your blood or tissue specimen (biopsy) may be tested for genetics. Please remember the Specialist Nurse is always available to provide any further information or support that you may need.

When do I get the results of investigations?
Once all your scans and histopathology results have been discussed at the MDT, an appointment will be arranged for you. This outpatient appointment will allow all your results to be discussed and explained to you and your treatment pathway will be outlined to you. This is your opportunity to discuss your treatment and any questions or concerns you may have with the team. If surgery is required, it may be necessary for you to attend pre-operation assessment on the same day. This assessment will establish if we have all the necessary information to determine your fitness for surgery and to ensure the best possible recovery for you. It is also an opportunity for you to tell us all about your individual needs and circumstances. All of this may take a few hours and therefore you should expect to remain in the hospital for this extended this length of time.

Appointment records
Please use the table below to help you keep a record of all your investigations and appointments

CT Scan (if required) Date:
MRI Scan (if required) Date:
Outpatient appointment Date:
Other appointments Date:

Notes and Questions:

You may think of further questions to ask about your treatment and it is a good idea to jot these down as you think of them using the space below. This will help you when you next visit the hospital or your GP.

Other useful contact numbers:

These two charity organisations provide information including both practical and emotional support.

Beating Bowel Cancer:

Email: Telephone: 020 8973 0011

Macmillan Cancer Support: A nursing advisory service providing 24-hour answer phone and call back service: Monday to Friday 9am to 8pm. Telephone: 0808 808 0000.