Treatment of GIST

GIST is a rare kind of cancer, and it is not easy to diagnose. In fact it has only been identified as a distinct type of cancer since about 2000. Prior to that, cases of GIST would probably have been diagnosed as some other undetermined form of sarcoma, and any treatment given would most likely not have been successful. There are currently no reliable statistics on the number of GIST patients in the UK, although some estimates put it at about 900 new cases per year. The relative rarity of GIST, and the fact that it has only recently been identified, means that four out of five GPs will probably never meet a case of GIST in their whole career!

However, once it is diagnosed by a specialist pathologist, you are probably best looked after by a Multi Disciplinary Team (MDT) with real expertise in treating GIST, unless you have been found to have had a very small and slow-growing tumour. There may be two MDTs involved in your care. The first will be the team which removed your tumour, if this has been done. This team will be specialists in the part of your body where the tumour was eg stomach, intestines, rectum. This is the Site Specific MDT. The second will be the team concerned with your on-going treatment with drugs, or just surveillance. This is the Sarcoma MDT. Many patients with GIST are still being treated in small general hospitals with little knowledge or experience of GIST.

The NICE “Improving Outcomes Guidance for People with Sarcoma”, was published in March 2006. This document is only “guidance” and unfortunately is not yet mandatory. However, among the recommendations this document makes, are:

“The site-specific MDT has primary responsibility to liaise with the sarcoma MDT to discuss the management of each patient. Specified care plans, taking into account currently available clinical trials, should be used. It should be made clear to patients who their key worker is.

Site-specific and sarcoma MDTs need to ensure that clear pathways exist between the two MDTs, to have common treatment pathways and to clarify under what circumstances patient care should be transferred from one to the other.

The medical management of patients with GIST should be supervised by cancer specialists with experience in the management of patients with GIST.”

It also states that,

“A sarcoma MDT is expected to manage at least 100 new patients with soft tissue sarcomas each year.”

It goes on to say that the anticipated benefits of this, will be

“....that all patients have access to appropriate expertise and advice. This should lead to better coordinated and specialist care and improved outcomes in terms of both survival and local control.”

One of the problems for new patients is that it is not easy to find these specialist sarcoma MDTs. One way is to look at where clinical trials are being carried out. Also of interest is whether a hospital is able to carry out mutational testing of tumour tissue. Mutational analysis promises to be of growing relevance to the treatment of GIST. Hospitals we believe to be currently involved are shown below:

Hospital	Clinical Trials?	Mutational testing?
Beatson Cancer Institute in Glasgow	Yes	No
Northern Centre for Cancer Care in Newcastle	Yes	No
The Christie Hospital in Manchester	Yes	Yes
Weston Park Hospital in Sheffield	Yes	No
Queen Elizabeth Hospital Birmingham	Yes	Yes
Addenbrooke’s Hospital in Cambridge	Yes	No
University College Hospital in London	Yes	No
The Royal Marsden Hospital in London and Sutton (Surrey)	Yes	Yes
Velindre Hospital in Cardiff	Yes	No
Bristol Royal Infirmary	No	Yes

There may be others, and if you know of them do please let us know. All these hospitals are well reported by our members.

There are also hospitals where members of GSUK are very confident in their medical team, and feel happy to recommend them. These will have a close relationship with one of the specialist centres listed above. We have had very good reports about

Ipswich Hospital

And we hope there will be others