GSUK Patient Meetings - 2009 Manchester Reports


GIST Support UK Meeting , 6th May 2009 in Manchester

We had a most interesting meeting, attended by around nearly 70 GIST patients and their carers. There were presentations by three main speakers: Roger Wilson (Sarcoma UK), Dr Mike Leahy (Consultant Oncologist at The Christie) and Dr Dominic Bray (Clinical Psychologist at Liverpool University Hospital). The day ended with a brief update on the status of GIST Support UK from the chair Judith Robinson.


  • Roger Wilson - NICE decisions and the care of GIST
  • Dr Mike Leahy - Current research into GIST
  • Dr Dominic Bray (clinical psychologst) - Living with uncertainty

Session Reports

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Latest Developments in Organisation of GIST Care and Decisions from NICE

Roger Wilson

Roger gave an overview of the current status of research into the treatment of sarcomas, and the approvals process for new drugs.

Organisation of treatment and care

He began by referring to the NICE report Improving Outcomes Guidance for People with Sarcoma (IOG). This had been developed during 2004-6 by a team of leading clinician, NHS and commissioner representatives, and patients. It was published in 2006, but full implementation is now delayed until the end of 2009. The IOG lays down a number of specific principles for the treatment sarcoma. These cover:

  • the need to improve speed and access to diagnosis
  • the fact that primary treatment needs to be under a specialist Multi-Disciplinary team (MDT)
  • standards for recognition as an MDT
  • identification of three specific types of sarcoma needing collaborative care:
    • head and neck sarcomas
    • gynae sarcomas
    • GIST

The key issue is the importance of receiving collaborative care from an MDT. The specialist MDT will see a large number of patients, they are familiar with international research, and where appropriate they have access to trials. Patients have the right to be referred to an MDT for a second opinion or for treatment.

NICE Technology Approvals

Roger went on to describe the way in which new treatments are appraised by NICE. In assessing a new treatment, NICE must:

  • use generic principles
  • aim for independence from the Government
  • operate in an open and accessible way
  • use a systematic review of available evidence
  • base its decisions on clinical efficacy and cost effectiveness.

On some issues the advice of NICE is mandatory on PCTs.

In spite of these objectives, however, NICE decisions have only just started to take account of the seriousness of a disease or of any "end of life" issues. They rely on so-called "Quality of Life" methods, that many people see as questionable in the context of cancer, and also on research data that in the case of rarer diseases my be very sparse and of limited statistical significance.

There are indications that some of these issues may be about to change, as a result of a review by Prof Mike Richards (the "Cancer Czar"). There will continue to be a role for NICE (the Conservative opposition have committed to keeping NICE if they come into power) and the process can never be perfect. Hopefully access to new treatments will hopefully become more efficient and more "patient-centred".

Gaining Access to Treatment

Funds for almost all NHS treatment are held by the Primary Care Trusts, of which there are 153 in England. Standard treatment is determined by what is commissioned by PCTs with the hospital trusts, and what is approved by NICE. Treatments outside the standard range are subject to consideration as "Exceptional Circumstances". Each of the 153 different PCTs has its own process for handling exceptional circumstances, involving processes for consideration, decision-making and where necessary, appeal. There is no formal requirement for clinical expertise in this decision-making process.

Sarcoma UK is currently campaigning for a regional decision-making process that involves clinical expertise and which is mandatory on all PCTs. New treatments should be reviewed as soon as they are licensed, and there needs to be a system for review of exceptional cases. There also needs to be a national consensus approach to the handling of rare diseases. Unfortunately PCTs are resistant to losing their autonomy.


Research is necessary to establish the safety of a new treatment and to understand any side effects as well as the effectiveness of the drug in treating the target disease. There are also patient reported outcomes which can be evaluated in terms of quality of life, and any value or benefits gained in comparison with other existing treatments. Successful research would lead eventually to market authorisation and to funding approval.

Clinical research has been dominated by the pharmaceutical industry, and over the years 1990-2005 920 anticancer drugs have been developed and tested, but only 32 have been licensed. The average development time to licence has been just over 9 years. Over half of those drugs that failed had already reached a late stage in the trials. Currently the main issues faced in the development of new cancer drugs are:

  • the cost of new drugs
  • whether effectiveness should be measured in terms of Progression-free Survival or Overall Survival
  • better statistical methods for analysing results from small groups
  • Quantity of Life vs Quality of Living


The danger is that the situation could become one where advanced cancer is a chronic disease for those who can afford the treatment, but a terminal disease for those who can't.

There needs to be a national debate on the way forward for the NHS in the context of cancer treatment.

Current Research into GIST

Dr Mike Leahy

Dr Leahy began by reminding us of how Imatinib came to be the first-line treatment for unresectable GIST. Imatinib was initially developed for the treatment of Chronic Myeloid Leukemia (CML). The place of GIST in the family of soft tissue sarcomas was probably not fully appreciated until Imatinib came on the scene. It was almost as if the discovery of a treatment helped to identify the disease! At the time, GIST was thought to be exceedingly rare, with an incidence of around 3 cases per million in the population. However, a retrospective study of retained tissue samples in Scandinavia showed that GIST was a great deal more common than previously thought, running at possibly 20 cases per million. In fact about 50% of all sarcomas diagnosed in the UK are probably GISTs, and the discovery of Imatinib has changed the focus of modern research into targeted therapies.

A great deal of current work is directed towards understanding the different mutations of GIST and their susceptibility to treatment. A mutational analysis is now routinely carried out for all GIST patients in the Christie Hospital. Imatinib often stops working after a time and the reason for this is not clearly understood. It may well be due to the emergence of new mutations of the original GIST. Mutational damage is a fact of life and something that cannot be avoided. Unfortunately some GIST mutations are more resistant to Imatinib than others.

Dr Leahy went on to say that there were many areas in which further research was needed. For example are there any specific causative agents or activities that can lead to the development of a GIST? A further unknown area in which research was needed was the use of adjuvant therapy. So far there was very little evidence either way, and the only truly valid trials are the two (with slightly different regimes) which are now running and which consider overall survival, as well as progression-free survival. The full results of these will not be available for many years. Three other trials for patients with GIST are starting this year in the UK. One will compare imatinib and nilotinib as first line treatment for GIST. Nilotinib was first developed as a treatment for imatinib-resistant CML. Another will compare Masatinib with imatinib , again as first line treatment. There are also a number of other tyrosine-kinase inhibitors under development.

Another area where more knowledge is needed, and a trial is about to start recruiting, is that of so-called adjuvant surgery. That is removing a stable non-progressing secondary tumour as a preventative measure. He commented that this might be a difficult trial to recruit to because he thought that patients might be unwilling to be randomised: Some would definitely want to avoid surgery and some would definitely seek it. In any case adjuvant surgery can often be incomplete.

Another approach to the treatment of GIST is the use of HSP90 (Heat-shock protein) inhibitors. However a trial of a new drug by Infinity has had to be halted because of excess toxicity. This was a disappointment, because there had been high hopes that this would be a valuable new means of treatment. However there are still possible routes forward for the HSP approach.

There is also expanded access to nilotinib, which is available for compassionate use from Novartis.

The following points were raised during the ensuing Question and Answer session:

Question: GPs in Germany are routinely trained to use ultrasound. Should this be a useful strategy for the UK?

Answer: Dr Leahy had his reservations about this approach. A lot of skill was required to use ultrasound, and it would represent a major change the way GPs in the UK were trained. He also said that US was limited as a diagnostic tool.

Question: What is the difference between CT, MRI and PET scans, insofar as they affect the treatment and diagnosis of GIST?

Answer: CT equipment is now widely available and CT scans are good for detecting abnormalities in the liver and peritoneum. MRI is not so effective for peritoneal disease, but can be used for patients who for some reason cannot tolerate the contrast agent that has to be injected before a CT scan. MRI is good for distinguishing some lesions in the liver such as haemangioma.

PET scans are expensive (approx £1,000 each, compared with £200 for a CT), and there are not many installations in the country. There has only been an NHS PET scanner at Christie for about a year. A PET scan can highlight areas of high metabolic activity, using a radioactively marked glucose, and this can be useful in detecting rapidly dividing cells. However the patient has to be relaxed and calm, otherwise metabolic activity elsewhere in the body can interfere with the result.

Question: Why does imatinib often stop working after time? Should patients increase their dose after time?

Answer: Dr Leahy said this was an area where he hoped to be able to do more research, based on progressive blood level testing for the drug.

Question: Why are patients on imatinib advised to avoid grapefruit and Seville oranges?

Answer: These two fruits are know to contain an agent that affects the rate at which imatinib is metabolised, which in turn can affect the efficacy of the drug. The problem is that the effect is unpredictable.

(GIST Support UK hopes that this doesn't mean a complete embargo on our breakfast marmalade - just a question of moderation!)

(Talk summarised by David Robinson)

Living with Uncertainty

Dr Dominic Bray

Dr Bray is a clinical psychologist working for the Sefton PCT at Southport and Aintree Hospitals. His session was more of a workshop than a talk, and he encouraged us to come up with ideas, rather than telling us the answers. This is a summary of what was a very lively, and sometimes quite emotional discussion. I personally found it very helpful. JKR

He explained that he would not be giving us "Death by Power Point", and mentioned the book "Lend me your ears" by Max Atkinson - a very useful guide to public speaking and how not to send your audience to sleep.

He began by asking the audience whether they liked surprises, which brought a mixed reaction.

He said that novelty is a great thing, but we often have experienced at least one nasty shock in our lives. The normal reactions of a frightened cat or dog are to fight, to run, or to freeze. We behave in the same ways, including after a diagnosis or around scan time.

How do we cope?

  1. Don't be surprisedWe are all different, and we react in different ways.
    • Some want to know everything
    • Some want to know nothing
    • Some want to talk to anyone who will listen
    • Some bottle it up and won't even talk to partners or close family members
    • Some cry
    • Some shake
    • Some can't sleep/concentrate/become forgetful

    ... but the main point is that it's normal to struggle one way or another after a nasty shock or at key times like scans... you're not "going mad!"

  2. What do you know already about dealing with the problems?
    • Have you dealt with another difficult situation before... and how did you do it? (you may then think: I could do it then - that's how I have got this far!)
    • Are you the sort of person who crosses bridges before you come to them or not? you want to have all bases covered, or will you deal with each challenge as it comes?
    • How have you dealt with previous medical traumas?
    • What have you learnt about coping already in dealing with your GIST diagnosis?
    • Recovery is usually an up and down affair with good days and bad days.
  3. Do what you've identified above...the things that work for you...and make a point of noticing ongoing successes, seeing as "success breeds success"!

    From my clinical experience, often it will be things that don't involve cancer..

    Things like

    • gardening
    • play with the dog
    • play with the (grand)children
    • take some exercise

Questions and Discussion:

Question: How do I tell my mother?

Answer: Why do you need to?

Question: Isn't it a burden on the family, keeping the secret?

Answer: Are you sure it really is such a burden...what would they say?

Question: What about the family that is in denial?

Answer: Are you sure it's denial? It's possibly avoidance. Perhaps the carer needs psychological help too.
Dominic gave many examples of how patients can be helped by expert intervention from people like him. He mentioned that James Brennan writes good stuff. A delegate also mentioned a useful book: "Thoughts that harm, thoughts that heal" by Keith Mason

His parting advice was, for some people, the best thing to do is "Get a dog! It will encourage you to walk, take your mind off things, give you lots of affection, and make few emotional demands.

It was pointed out later that the needs of carers had been rather overlooked. Dominic pointed out that the carers can help themselves in exactly the same ways as patients can. This was passed on to the group!

(Talk summarised by Judith Robinson)


Disclaimer: These are accounts of sessions held at our May 2009 GIST Conference. Whilst general principles, as outlined, will probably be useful, they should not be taken as a substitute for seeking face-to-face professional help. This is usually best accessed via GP's.