The results of a biopsy taken during a colonoscopy have revealed a neuroendocrine tumour. I have been referred to a consultant in the lower bowel general surgery unit. I have not had that appointment yet and I would like to know what questions I should ask and what information I need to know.
I would also like to know where the UK’s leading centre of excellence is for what I gather is a rare cancer.
Chris, many thanks for writing to us here at Ask the Expert. We are sorry to hear about your recent diagnosis.
Neuroendocrine tumours(NET) are an uncommon cancer and are generally tumours which affect the lungs, bowel- small and large intestine or appendix, stomach and the pancreas.
These tumours often affect people over the age of 60 and the cause is generally unknown.
Signs and symptoms often include changes to the appetite, lethargy, weight loss, changes to bowel habits, shortness of breath and flushing of the skin. Other symptoms may present depending on where the tumour is present.
These tumours are often diagnosed through tests including blood and urine tests as well as diagnostic examinations such as colonoscopies, gastroscopies, MRI and CT scans and other types of scanning.
Once a diagnosis has been made further tests may be necessary to ascertain the extent and spread of the tumour and in order to help a treatment plan be made.
Treatment may include surgery, radiotherapy and chemotherapy as well as alterations to your diet to reduce reaction to foods that exacerbate presenting symptoms.
Your doctors – GP and Hospital will be able to help you with your treatment and care needed.
The sort of questions that would be a good idea ask your doctors at your next appointment may include:
- Diagnosis- Where and severity of the cancer?
- Treatment- What treatment is effective, how is this done and when will this commence?
- What side effects can I expect from treatment?
- Prognosis if treatment is commenced as soon as possible?
- What can I do to help myself recover and stay healthy during the ongoing treatment and recovery period?
You may feel that it would be a good idea to have someone close to you, say your partner or family member to come with you to these appointments as a support but also to take notes so answers can be remembered or written down.
Regarding on-going support at this time your family and friends will be important but I also suggest the following networks too who can provide information and possibly practical support too:
In regards to Centres of Excellence for the treatment of NET. We have written below details of the specialist hospitals in the UK:
- Royal Free Hospital, London
- Merseyside Regional Neuroendocrine service, Royal Liverpool University Hospital
- Christie NHS Foundation trust, Manchester
- Oxford NET Centre at the Oxford Radcliffe Hospitals, Oxford
We are sure that the doctors at the hospital where you are currently receiving care will ensure that you will receive the best care possible and we would expect them to liaise with these centres regarding your treatment- this may be another question to ask them at your up-coming consultation.
We wish you all the very best and hope that this information is helpful.
Answered by the Health at Hand nurses