A Gastro-Intestinal Stromal Tumour is rare, but you are not alone!


We had a most interesting meeting, attended by around 80 GIST patients and their carers. We were fortunate enough to be joined for part of the day by Dr Mike Leahy and Dr Bill Newman from the Christie Hospital in Manchester. We are very grateful to them for spending their time with us and for fielding a wealth of questions.

We are also grateful to Professor Garry Whitelam for minuting the meeting and for preparing the following report, which has also been checked by Dr Leahy and Dr Newman.


The morning session of the meeting began with some opening remarks from Roger Wilson (Sarcoma UK), Judith Robinson and David Cook.

Roger highlighted the following recent developments:

  • The formation of The Sarcoma Trust which aims to become a registered charity. The Trust was formed in January and has applied for registration with the Charities Commission. The Trust will become a focus for fund raising.


  • Team Sarcoma UK will be holding an awareness event in Torquay in July, as part of a worldwide sarcoma awareness initiative.


  • Roger also asked whether the GIST Support UK would support joining the European Cancer Patient Coalition, a lobby group that includes Sarcoma UK as a member organisation. There was widespread support for joining.


  • On the issue of lobbying, Roger reported that the UK Government, in the form of The All Party Parliamentary Group on Cancer (chaired by Dr Ian Gibson, MP), are investigating a cancer reform strategy, "A New Vision for Cancer", launched in March 2006, to replace the "NHS Cancer Plan" http://www.appg-cancer.org.uk/docs/ANewVisionforCancer.pdf.

Judith highlighted the GIST Support UK mailing list. Those interested in joining should contact David Cook or David Robinson (contact details are available on the GIST Support UK website).

David Cook informed the meeting that a member is about to undergo Hepatic Artery Embolisation (HAE) as a treatment for liver metastasis.


The remainder of the morning session involved a free question and answer session with Dr Michael Leahy (Consultant Medical Oncologist, Christie Hospital, Manchester).

Question: How could intolerance to bread occur following gastrectomy?

Answer: The stomach is extremely important to the functioning of the whole GI tract. With time the bowel may be able to adapt to some extent.

Question: Is there a National Centre of Excellence for GIST?

Answer: There are clear guidelines for the follow-up after the successful complete surgical resection of a primary GIST and this may not require referral to a specialist team, although expert pathological review to ensure a correct diagnosis is crucial. The management of Imatinib (Glivec) treatment does require special expertise and there are currently about eight centres with large enough practices to develop such expertise. A re-organisation of services for patients with sarcoma is currently under way in the UK. There are currently 34 Cancer Networks, but not all have sarcoma teams. The plan is to join Cancer Networks together into super-regional zones and to ensure that each of these has sarcoma specialists. In the meantime, every patient has the right to request a second opinion from a suitable specialist.


Question: What are the long term effects of Imatinib (Glivec)?

Answer: This is largely unknown because there are still relatively few patients who have been on the drug for more than a few years. A recent study has suggested that Imatinib (Glivec) may display cardiotoxicity (effects on the heart), although such cases seem to be very rare. The Christie Hospital has begun performing routine cardiac monitoring of Imatinib (Glivec) patients as a precaution.


Question: Is it possible that Imatinib (Glivec)-resistant tumours could become responsive after a break from the drug?

Answer: Additional mutations are frequently detected in the c-KIT gene of Imatinib (Glivec)-resistant tumours. In theory, Imatinib (Glivec) withdrawal could lead to competition between tumour cells carrying multiple mutations and those carrying single mutations (i.e. those that may be Imatinib (Glivec)-sensitive). However, the potential benefits of Imatinib (Glivec) withdrawal are doubtful.


Question: What is the recommended action for management of paediatric GIST following resection?

Answer: Childhood GIST is very rare and generally not sensitive to Imatinib (Glivec). It is possible that Sunitinib (Sutent) may prove be useful in cases of recurrence.

Question: Could the appearance of lung nodule represent GIST metastasis?

Answer: The lung is not usually a primary site of GIST metastasis. Lung metastases can develop, but usually after metastases have developed in the abdomen and pelvic regions.


Question: For patients that have tried both Imatinib (Glivec) and Sunitinib (Sutent) what treatment options are available?

Answer: Imatinib (Glivec) is tyrosine kinase inhibitor with quite a narrow spectrum of activity, whereas Sunitinib (Sutent) has a wider spectrum of activity, Sunitinib (Sutent) which is therefore called a multi-targeting kinase inhibitor. This has the potential additional benefit that it can affect angiogenesis (the development of new blood vessels to tumours). Nilotinib is a new kinase inhibitor which is highly potent but has a narrow spectrum of activity like imatinib and is currently undergoing trials. Some new combination therapies are also in trials.


Question: What is the optimal frequency of CT scans following resection of primary GIST?

Answer: There is no clear evidence of the optimal post-operative scanning schedule. The guidelines we are mostly using are a consensus of expert opinion only. It is possible to predict the risk of relapse after surgery from the tumour size and mitotic index (cell division rate). Based on this, the consensus is to scan higher risk patients more frequently. For patients who have had a high risk tumour removed, the guidelines recommend scans every 6 months for 3 years then annually to 5 years after surgery. The guidelines recommend Imatinib (Glivec) treatment immediately upon recurrence. It is not known whether giving Imatinib (Glivec) immediately after surgery (adjuvant therapy) would be beneficial or harmful. A trial of this regime is underway in Europe and Christie Hospital and Royal Marsden are involved in this trial.

Question: What is the importance/availability of GIST tumour genotyping?

Answer: Mutation status can be useful in determining an appropriate therapy/patient management strategy, e.g. 400mg Imatinib (Glivec) versus 800mg of Imatinib (Glivec) for some of the rarer variants.

Question: Would cases of paediatric GIST have preference when PCT budgets are squeezed?

Answer: Paediatric cases are generally well prioritised.

Question: What may be the benefits of surgery for metastases in Imatinib (Glivec) patients?

Answer: The value of this type of surgery in largely unknown and a trial is being organised but may be difficult to complete. Meanwhile, several centres are performing surgery for secondaries when they are confined to the liver and some centres are also offering surgery for secondary peritoneal disease.


Question: Is neutropenia (reduced count of a type of white blood cell) a potentially severe side-effect of Imatinib (Glivec)?

Answer: Some reduction in blood count is common, but cases where this requires withdrawal of Imatinib (Glivec) are very rare.

Question: What trials of new drugs are underway?

Answer: Currently, c-KIT and PDGFRα are the primary targets of drug development. For example, AZD2171 (a multi-targetting tyrosine kinase inhibitor) is undergoing Phase II trials at the Christie. In the future other components of the signalling cascade downstream of these kinases may also become targets. RAD001 targets mTOR which is one of the downstream targets and is being used in combination therapy trials. Other potential targets for therapy include proteins such as bcl2, which is involved in preventing tumour cell death.


Question: Is there a recommended diet for GIST patients?

Answer: GI tract surgery often forces a change in diet. The side effects of Imatinib (Glivec) (e.g. nausea, diarrhoea) may also require a change in diet. No specific diet is known that reduces the risk of relapse.

Question: How important is the width of margins during resection of primary GIST?

Answer: Primary GISTs tend to be very localised, especially in the stomach. Clean margins are more important than wide margins.

Question: Are MRI scans preferable to CT scans?

Answer: MRI scans tend to be better for visualising liver metastases, whereas CT scans are better for visualising peritoneal metastases. Routine surveillance for relapse commonly uses CT, which gives a good liver view and a better peritoneal view.

Question: How long should Imatinib (Glivec) be continued following resection of secondary sites?

Answer: We really don't know. The current view is that, for most patients, treatment should be given indefinitely.

Question: What can be done to manage ascites (fluid accumulation on the peritoneal cavity) following liver resection?

Answer: This is rare and should be monitored.

Question: Are PCT decisions on drugs only an issue of funding?

Answer: NICE determines whether drugs give value for money. Sunitinib (Sutent), although licensed, is not yet approved by NICE.



The afternoon session began with Dr Bill Newman, a consultant clinical geneticist at Manchester University, introducing clinical genetics and describing some of his research interests. He then took part in a question and answer session.

Question: Can mutation status tests be applied to archived tissue?

Answer: This is difficult, but is a focus of current work and there has been some success. Many hospitals do retain samples.

Question: Are other centres in the UK carrying out mutation status testing?

Answer: There are other research laboratories carrying out these tests, but Manchester is offering this as a clinical service. In mainland Europe there is a major centre for GIST genotyping in Leuven (Belgium) that has been helpful in establishing the service in Manchester.

Question: Will the service be affordable?

Answer: In Belgium, cancer diagnosis entitles patients to have 2 genetic tests performed. In the UK discussion about how testing could be funded are ongoing. The genetic test costs around £300, which is small compared with the costs of drug therapy. It is hoped that in the future the results of genotyping will be used in clinical management.

Question: Should all GIST patients request a mutation status test?

Answer: The standard immunohistochemistry test (for KIT-positive cells) is fine for diagnosis in most cases. The genetic test may help with determining drug dosage and with predicting outcomes. A European study has been completed which indicates some benefits in genetic testing but further studies are required before such testing becomes routine

Question: Does genetic testing help the patient?

Answer: At the moment genetic tests have relatively little direct impact on individual patient care. However, in the future this type of testing may have an increased role to play in prognosis and management.

Question: Is there evidence for inheritance of GIST?

Answer: Familial GIST does exist, but it is extremely rare. Almost all GISTs involve mutations of genes within the tumour itself and NOT throughout the body. Since germ cells (eggs and sperm) do not carry the mutations, typical GIST is not inherited.

Question: Can GIST be transferred from a pregnant mother to a developing foetus?

Answer: There is no evidence that this can happen.


The final session of the meeting involved a discussion of GIST Support UK business.

GIST Support UK structure

Judith pointed out that the size of the meeting indicated that the GIST Support UK website is clearly working. Judith reminded the meeting of the MailTalk service.

GIST Support UK currently does not have a formal structure and its finances are handled by Sarcoma UK. Judith asked whether we need more structure, with appointed officers, such as a treasurer and secretary etc. There was some discussion of the possible benefits of a more formal structure, but no consensus was reached. There was good support for the idea of actual membership, perhaps with an annual subscription. This should be considered after attainment of charitable status by The Sarcoma Trust.

Prototype cards for GIST patients

Feedback was requested about the design of cards that could be carried providing details of medication and names of consultants etc. Two prototypes were available to view. In the same vein, a draft document, to allow travel with medications, was to be posted for comments/feedback.

Next meeting

The next meeting of GIST Support UK will be in London, at the Royal Institution of British Architects (66 Portland Place), on October 25th 2007. It was agreed to invite a complementary therapist to attend.

Posted: 2/6/2007

Clinical Trial - 3 v 5 years adjuvant imatinib recruitment extended until 31st March 2020- trial centre list update here

The next PAWS-GIST clinic is happening on Friday 12th April 2019. Registration is via PAWSGISTCLINIC.ORG.UK 

Our next Patient Meetings are in Leeds on Friday 4th October 2019 and London - 6th March 2020. If you would like to join us please email  to register. We look forward to seeing you...

Rare Cancer Patient Survey - collecting feedback on rare cancer patient experience with clinical trials...

On the 10th October the Scottish Sarcoma network are holding a day called RISE at the Western Park Hotel in Falkirk. The day is dedicated to people with a sarcoma diagnosis and their families to focus on "what matters to me". This poster contains the registration details if you would like to attend. GIST Support UK will be represented at this meeting and we look forward to seeing you. 

A big thank you to Scotmid Co-operative for choosing to support GIST Support UK and the development of our national tissue bank. Read more here


If you missed any of our previous meetings, you can view the speakers' presentations here

Clinical Trial - 3 v 5 years adjuvant imatinib - trial centre list update here

19th August 2017 - Page 19 of the Times GIST report - READ HERE

New UK clinical practice guidelines for the management of gastrointestinal stromal tumours (GIST) published by British Sarcoma Group - NEWS >>>

GSUK's Chair Nic Puntis discusses the BBC's report on the Cancer Drugs Fund on BBC Wiltshire Radio - NEWS>>>.  

Update on GIST clinical trials that are recruiting and in the pipeline....

We have launched our first GIST patient survey and hope to gather a better understanding of the landscape for GIST patient treatment in the UK. The survey closes on 10th September 2016 so if you would like to participate please complete the survey by clicking this link

'ALT' GIST Trial to open in the UK soon! We have been alerted to a new trial that will be opening in the UK in the near future for metastatic GIST patients. Read more on our Trials & Research page 

PAWS-GIST Clinic 7 - Newsletter June 2016

GSUK attends Cancer52 parliamentary reception to raise awareness of rare and less common cancers.

GSUK Research Update 2016 - Read all about it here

NHS England's Sarcoma Service Specification consultation is open until Weds 20th April 2016.       Please register your views by responding directly via this link.                             GSUK's response can be viewed here

Cycle for GSUK! We have four allocated charity places on the RideLondon event for this year and also for 2017 and 2018. Go to our News page to find out more!

The Masitinib Trial is now open.  For further details of this trial, and to find out which centres and clinicians are involved, please go to our Research & Trials page. 

Regorafenib has remained on the NHS England Cancer Drug Fund List for GIST patients! Read more!

Can you help Professor Eamonn Maher with his research Study? If you have had, or have, two or more primary GISTs, or a GIST and another tumour, find out more at the bottom of our research page

PRESS RELEASE - UKTV announces GIST Support UK as its Charity of the Year 2015

TUMOUR BANK UPDATE: "We have been granted approval from the NHS ethics committee for our National GIST Tissue Bank which will store these valuable GIST tumour samples for research. If you are about to have an operation and would like to donate your tissue for research please email  with your contact details. Visit our Retention of tissue page for regular updates.

Scottish Sarcoma Network: Interested in attending their Sarcoma education days or finding out about the services on offer ? Read our News page

Use of human tissue
Do go to our new "Retention of Tissue" page and please sign a consent form!

GSUK funds research!
GSUK provides £20,000 from donated funds to help start a research project at the Royal Marsden. Visit our News page for further information and picture.

Funds being raised for UK PAWS GIST clinic
See our News Page for more information.

NICE approves improved treatment for ascites
The PleurX system allows the patient to drain fluid from the abdominal cavity without having to pay repeated visits to hospital. More information on our News Page.

European Commission approves three years' adjuvant use of Glivec
Visit our News page for more details.

A press release in February claiming the effectiveness of this drug as a replacement for Sunitinib appeared to be premature at the time. However subsequent news may be more encouraging! See our News page for more details.