Ideally there should be a "key worker", usually a specialist nurse, who will be available to you. He or she will be the person you can call if you have any concerns.

AFTER SURGERY

If you have had surgery you will be followed up initially by the surgical team, whichever bit of you was involved. The surgical team will be in touch with the cancer specialists (oncologists) to decide whether or not you need to be given drug treatment or be entered into a clinical trial. You will certainly have regular CT scans to check for recurrence.

If you have had stomach surgery the key worker may organise support from a dietician or help you with any other eating problems you may have.

ARE YOU TAKING GLIVEC?

Most patients with c-KIT positive GISTs respond to taking Glivec (there is some uncertainty about the figure but it is estimated to be around 80%). But the time taken to respond is very variable; some patients respond in a month or two while others may take several months. Here, it is as well to think what is meant by "respond":

If you are given a PET (Positron Emission Tomography) scan you may be able to see whether there is a response to the Glivec within days or even hours, because a PET scan measures the activity of a tumour (ie how "alive" it is), rather than its size.

Most patients have CT scans, which are X-ray images. Here "response" usually means shrinkage of the tumour(s). It is in this area where Glivec is sometimes a bit different. Most patients get tumour shrinkage after a few months and many who do not experience shrinkage, get another response; the tumours start to "die". This shows up on the scans as a reduction in the density of the tumour. Some patients who have taken Glivec to attack their tumour and have subsequently had surgery say that the surgeons report that the tumour is "jelly-like" or "nearly fluid" which, presumably, is a partially "dead" tumour.

So, don’t despair if your tumour does not shrink at first, it may be being attacked from within.

Also, remember that interpreting CT scans is not trivial; it requires experience and good judgement. A tumour may change shape or move in the body and present a different point of view to the scan. Just try to be optimistic and persevere with the pills!

WILL THE GIST RECUR?

Unfortunately GISTs do often recur. If the surgery was not able to remove all of the tumour, the condition is particularly likely to recur. Recurrences ("metastases"or "mets") are most often found near the original tumour or in the liver (downstream from the original tumour).

HOW WILL I KNOW IF IT HAS RECURRED?

If the tumour was correctly identified as a GIST, you will be put on a programme of regular body scans to check for recurrence. Typically these are the so-called CT scans which involve scanning the thorax (neck to bottom of ribs) and abdomen. It’s a painless process which takes only a few minutes. You may have to swallow some barium-containing liquid before the scan, and you will usually be injected with a dye to enhance the contrast on the scans.

These scans are needed because metastases may not produce any symptoms. On the other hand, after surgery, there will probably be many symptoms which are just part of the healing process, but which can be very worrying. There may be aches and pains and bouts of colic or diarrhoea (part of the “dumping syndrome”), as well as the side effects of Glivec if you are taking it. A clear scan is very reassuring. If you are worried, contact your "key worker" or your specialist.

WHAT CAN BE DONE IF IT RECURS?

There is sometimes the option of more surgery, particularly if the recurrence is caught early and the new tumour is small.

If surgery is not an option, and If you are not already taking it, you will almost certainly be put on Glivec.

If you are already on Glivec, then there is the possibility of increasing the dose. This is not yet approved by NICE.

The next option is to be put on Sutent. Again this is not yet licensed in the UK, but is available in a few specialist centres.

Then there are drug trials. Your oncologist will know which are available and suitable for you.

(Updated February 2006)