FAQ

I have been diagnosed with Neuroendocrine Tumours, what should I do now?

Do not panic and do not despair. NETs are sometimes referred to as “the best cancer you can get”. This is because the tumour growth with NETs is usually very slow compared to more mainstream cancers. Your doctor may have advised you that there is no need to rush into treatment and that time is on your side. You have time to consider all the treatment paths available and to ensure the correct one is chosen for you. It is always useful to seek a second opinion when diagnosed with a serious illness and your doctor should be able to help you with this. It is important that you are in a hospital which has access to and uses a multi-disciplinary team approach to the diagnosis, treatment and ongoing monitoring of NET patients. Depending on your individual circumstances, surgery may be considered and/or other treatments to shrink or kill the tumours. It is likely that you will be put on a monthly regimen of somatostatin injections to curb any carcinoid syndrome effects and with the possible side-effect of inhibiting further tumour growth. This website lists many of the treatments available.

I have to take a 5-HIAA test, what do I need to do to prepare for this?

This is a very common and regular test for NET patients. It involves the collection of your urine over a full 24 hour period. You usually start the test after emptying your
bladder in the morning. Then you collect all urine passed into a large container over the next 24 hours finishing with emptying your bladder on waking the next morning.
There are some foods that affect obtaining a true reading and you should avoid these foods for several days before you start the test and also during the 24 hour collection phase. More information on this test can be obtained from Carcinoid.org.

What happens with a contrast MRI?

A contrast MRI is often used as a diagnostic and monitoring procedure in your NET treatment plan. This is usually used to monitor and check for liver metastases. It is
a normal MRI scan using magnetism but focused on the abdomen. The scanning is usually done in two stages. Firstly you are scanned as normal without the contrast.
Then you are infused with a contrast agent via a canula inserted into your arm. This is usually allowed to settle in your system and you may be asked to wait for some
minutes. The scan is then repeated and the images obtained can be compared to the pre-contrast scan images.

What happens with a contrast CT Scan?

A CT Scan uses X-rays to scan the body. This is often used to detect and monitor tumours in the bowel. Usually a contrast agent is taken orally as a drink. You may
be asked to drink a lot of this liquid and it can be difficult to take. You will be given sufficient time to complete the drinks. Once sufficient time has been given for the
liquid to occupy the bowel, then you will be brought into the imaging chamber and the scan will commence.

How can I coordinate my blood tests and scan dates with my next hospital
appointment?

Following your regular check-up appointment in hospital, you will usually be asked to undergo more blood, urine and imaging scans before your next scheduled visit to the hospital. Your doctor will give you the necessary blood and urine test forms to be used when you present to have these tests undertaken. Remember to schedule these tests based on your next hospital appointment. You will need to allow 4 weeks for the Chromogranin blood test to be completed and results returned to your doctor. Similarly, the 5-HIAA urine test requires a number of weeks to process. It is advisable to present for this test at the same time as the Chromogranin test. Imaging scans will be requested by your doctor following your last hospital appointment. Usually he cannot schedule this with the radiology department. When you receive your date, make sure that it is 3-4 weeks in advance of your next hospital appointment. You need to give sufficient time for the scan report to be written and perhaps for your case to go tot he MDT for consideration in advance of your hospital visit. If the dates are too early or too late, contact the radiology department and explain your circumstances and attempt to have the tests rescheduled to better coincide with your hospital visit.

What sort of blood and other tests are done before my next hospital
appointment?

Typical tests used to monitor the progression of NETs are:

  • Chromogranin-A
  • 5-HIAA
  • Contrast MRI
  • CT Scan
  • blood test that measures certain markers that show NET activity
  • 24-hour urine collection that measures secreted hormones to measure NET activity
  • Imaging technique to monitor tumours, especially helpful with liver metastases
  • Imaging technique useful in checking bowel and abdomen for NETs

I missed my regular monthly somatostatin injection, what do I do?

Somatostatin injections are taken every 28 days. If you miss an injection for whatever reason, you should take it as soon as possible thereafter. You should then readjust your 28-day schedule from this new date.