GCUK Patient Meetings - 2009 London Reports

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

GIST Cancer UK Meeting , 22nd October 2009 At Thistle Hotel, Barbican, London

86 patients carers and interested professionals attended this successful event. There were three presentations, by Dr Beatrice Seddon, Mr Simon Wood and Dr Zahir Amin. There was also a report on the work being done by the GIST Cancer UK Trust, a workshop on communication and lots of general networking, over coffee, lunch and tea.

Copies of the book "GIST Patient Guide", the pocket sized booklet for patients, and the red and blue ribbons were available. (If anyone who was not able to attend would like any of these, please contact Judith and she will be happy to send them to you.)

Straw Poll on Side-effects

At the meeting patients were invited to take part in a small survey on the side-effects of Glivec and Sutent. As there were only 19 responses for Glivec, the results are of limited statistical value, but they are nevertheless interesting. Unfortunately there were too few patients on Sutent for the survey to be of any meaningful value. Click here to see the table of results for Glivec.


  • Dr Beatrice Seddon - Developments in treatment (report awaited)
  • Dr Simon Wood - Data collection project
  • Dr Zahir Amin (consultant radiologist) - Use of imaging for evaluation and diagnosis
  • "Straw poll" on Side-effects of Imatinib

Session Reports

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GIST - current status and new developments

Dr Beatrice Seddon

Oncologist, London Sarcoma Service, University College Hospital, London

Dr Beatrice Seddon began by saying that the two most important recent developments were advances in adjuvant therapy - that is, secondary treatment such as using imatinib to support initial treatment such as surgery - and the arrival of new targeted drugs in third-line treatment.

She told attenders that there are now approximately 800 cases of GIST in the UK every year. The rare tumour of the gastrointestinal (GI) tract is often caused by the activating mutations of two specific genes, KIT (also known as CD117 or "C-kit receptor") and PDGFR (which stands for "platelet-derived growth factor receptor"). In the early stages of localised disease, surgical management has been effective to date, but in advanced metastatic conditions (metastases are secondary tumours that have developed away from the primary tumour, usually in the liver or peritoneum), which are usually resistant to chemotherapy and radiotherapy, the targeted drug imatinib has had the best results.

Imatinib prevents the adenosine triphosphate substance that is needed by all processes in the body that require energy from binding up. It also acts against the KIT and PDGFR A genes. It is so far the number one "targeted drug" for combating GISTs.

Imatinib was brought to the medical world's attention as recently as 2001 by a paper in the New England Journal of Medicine. It stimulated a great deal of research and led to a second phase ("Phase II") of studies being carried out.

Since then, a third phase of studies ("Phase III"), which has included the European EORTC report in 2004 and the USA's Intergroup paper in 2008, has come to the conclusion that there is no one standard treatment for GISTs. Overall survival results from the two studies indicate that, after 30 months of taking a starting dose of 400mg of imatinib, about a third of the patients are still alive.

How long does imatinib work for?

The B2222 study that appeared in the Journal of Clinical Oncology showed that people tend to respond for about 2.5 years. This Phase II long-term study followed 127 patients with advanced or metastatic GISTs. By far the majority of patients (88.2%) had activating mutations of the KIT receptor, and the most common mutations were exon 11 (67%) and exon 9 (18%). But patients with KIT exon 11 were likely to survive longer than 2.5 years, and exon 9 patients did better by taking 800mg doses from the start.

Another important deduction was that patients with non-shrinking tumours ("stable disease", SD) seemed to be doing just as well as people with shrinking tumours ("partial response", PR). As Dr Seddon wryly commented, "Size doesn't matter."

Gene mutation analysis

This tells clinicians how you are likely to respond to imatinib. One of its most crucial functions is to help identify patients with KIT exon 9 so that they can be put on the higher 800mg dose. It can also help to pinpoint patients with mutations who are resistant to primary treatment, particularly those with PDGFR A exon 18 D842V.

Adjuvant imatinib

Use of imatinib as an adjuvant therapy is increasing. Medics can now more accurately predict recurrence of a "resected" (surgically removed) localised GIST on the basis of the location of the tumour, its size and the mitotic rate (mitosis is when cells divide). The medical profession is becoming more interested in using adjuvant imatinib to reduce the risk of recurrence.

A USA Phase III trial led by Ronald DeMatteo began to indicate that imatinib significantly improved recurrence-free survival of patients, but it was stopped early because certain patients on a placebo drug were being put in danger and so had to be put on imatinib.

Overall results from the study seemed positive but, as Dr Seddon pointed out, "The study raised more questions than it answered."

In terms of recent studies on adjuvant treatment using imatinib, there is a closed trial being undertaken by EORTC (the European Organisation for Research and Treatment of Cancer) covering primary intermediate and high-risk patients. It is monitoring how long before imatinib stops working with patients. Results are expected in 2012.

A Scandinavian closed Phase III study comparing the effect of imatinib after 12 months and 36 months is due to be delivered in December 2011.

The American College of Surgeons Oncology Group (ACOSOG) has conducted a trial of 12 months' imatinib treatment for patients who have had high-risk tumours up to 10cm surgically removed. It found that recurrence-free rates were 94% (one year), 73% (two years) and 61% (three years).

Drug manufacturer Novartis is currently sponsoring a five-year study in the USA covering patients who are at significant risk of tumour recurrence.

Adjuvant treatment using imatinib has now been approved by both the USA's Food and Drug Administration (FDA) and EMEA (European agency for the evaluation of medicinal products). This treatment is now generally agreed delays relapse and "cures" more patients. The medical profession is now awaiting the results from Scandinavian and German "mature studies".

Should all patients be put on imatinib?

Not necessarily, said Dr Seddon. There were still many side-effects and a lot of unanswered questions.

  • Which patients should be selected for adjuvant imatinib treatment?
  • How should patients be assessed as low, medium or high-risk?
  • What is the best or optimal dose?
  • What is the optimal duration - one year, three years or five years?
  • How much should gene mutation be taken into account?
  • The drug may be licensed, but who's going to pay for it?

Imatinib is not funded in the UK at the moment. A NICE (National Institute for Health and Clinical Excellence) scoping meeting took place in September, but at the time of the GIST Patient Meeting (22 October), no decision had been forthcoming.

What action should be taken if the GIST progresses under imatinib?

Within three months of beginning treatment, 10-15% of patients will display primary resistance to imatinib, and by the end of two years, up to 50% of patients will have experienced GIST progression (secondary imatinib resistance). The options are:

  • Increase the dose to 800mg.
  • Use second-line treatment, such as sunitinib.
  • Use third-line treatments, including being involved in clinical trials with such drugs as nilotinib.
  • Turn to non-medical treatment, such as surgery or radio-frequency ablation (RFA), where high-frequency alternative current is passed through a tumour under the image guidance of an x-ray, CT (computed tomography) or ultrasound scan.

Increasing the imatinib dose

A clinical trial run by Pfizer compared starting treatment with a dose of 800mg imatinib with starting with a dose of 400mg and then moving to sunitinib if and when the GIST began to progress. Unfortunately, Pfizer had to close the trial in September because of a tack of patient volunteers.

A further question that came out of this trial was: who is going to fund the higher imatinib dose of 800mg? Dr Seddon suggested that primary care trusts would have to make applications on specific cases.


Sunitinib is the successor to imatinib. It blocks key receptor targets in GISTs, and also inhibits tumour growth. This year NICE confirmed its efficacy but stated that it is too expensive to provide at present. However, in September, NICE finally gave its full approval after the Department of Health and Pfizer came up with a cost-sharing deal.


Nilotinib is the new targeted drug that is attracting attention. Manufactured by Novartis, it has been subject to a Phase I study and it has been proven to be 30 times more potent in vitro than imatinib. It can also be taken orally.

However, perhaps inevitably, it is very costly. As Dr Seddon quipped, "For Novartis, two expensive treatments [nilotinib and sunitinib] are better than one."

It is currently used as a third-line treatment in the UK, but tends to be confined to compassionate use at selected centres.

In a Phase I study of both nilotinib alone and in combination with imatinib in patients with an imatinib-resistant GIST, undertaken by GD Demetri and published in Clinical Cancer Research this year, 78% of the 53 patients treated reached a "stable disease" (SD) condition. With patients on nilotinib alone, 72% reached an SD stage lasting between four and six months.

On the down side, with prominent skin side-effects included bilirubin and skin rash, and with patients experiencing toxic reactions, doses were reduced. For future trials, two selections will be used:

  • Nilotinib 400mg twice a day with imatinib 400mg once a day.
  • Only nilotinib 400mg twice a day.

The general conclusion seems to be that the drug is reasonably well tolerated alone or with imatinib, and there have been promising results with imatinib-resistant patients.

Where now with nilotinib?

In terms of third-line treatment, Phase II studies are under way in Japan, the USA and Israel. In the UK, a Phase II study is due to begin at the end of this year, and compassionate use is allowed at selected centres.

In terms of second-line treatment, a Phase III study is being carried out in Brazil, Argentina, Venezuela, Colombia, Thailand and Korea.

Currently recruiting is the CAMN107-2301 Phase III study of imatinib 400mg versus nilotinib twice daily first line in newly diagnosed metastatic GISTs. The trial is being run from 92 centres worldwide, including seven in the UK - Glasgow, Newcastle, Manchester, Cambridge, Birmingham, University College Hospital, London and the Royal Marsden Hospital, London.

Dr Seddon said the study would be useful in monitoring the effectiveness of nilotinib. A total of 736 patient volunteers are being sought across the globe.

Next new drug - dasatinib

This multi-targeted oral drug is more potent than imatinib, and in a small Phase II study on advanced sarcomas with patients who had stopped taking imatinib, 30% reached a "stable disease" stage, while 18% attained a stage of "progression-free survival" (PFS) after six months.

Experts are still awaiting genotype data to satisfy further questions. For example, are there specific mutations that particularly benefit from dasatinib? Currently there is a Phase II first study under way in Switzerland.


Dr Seddon rounded off her informative presentation with a number of conclusions. In terms of the GIST disease in its early stages, better risk assessment is needed to guide follow-up, while adjuvant therapy is now very much on the agenda.

With the benefits of more precise gene mutation analysis, it is becoming increasingly important to tailor treatment to individual patients' requirements.

In terms of the disease at an advanced stage, sunitinib has now been approved by NICE, and there are both first-line and third-line studies currently in hand on nilotinib.

Questions and answers

Q: "My doctor told me I was getting fat. Actually I had a huge tumour. Is early diagnosis improving among doctors in the UK?"

Dr Seddon: "Certainly greater research is helping to make for faster, earlier diagnosis. GISTs are often now picked up on scans that have been taken for something else. The medical profession is trying to diagnose GISTs earlier. It is a question of raising awareness among GPs so they can make a more informed decision over localised weight gain."

Q: "Can you give more information on the CAMN107-2301 study?"

Dr Seddon: "It is a large Phase III study that is currently recruiting. The next stage is obtaining approval from NICE, but this could take four to five years."

Posted: 25/11/201


Dr Simon Wood

Consultant surgeon Royal Gwent Hospital, Newport, Wales
(prepared with Dr Ashraf Rasheed)

Dr Wood put attendees at their ease straight after lunch by announcing that his presentation would not be a biology lesson!

Dr Wood said that every year per million people across the globe, nine to 19 patients are diagnosed as having a GIST. There are approximately 900 cases per year in the UK.

To date, GISTs are rarely encountered by most doctors in the UK, so diagnoses and suggested treatment decisions are inconsistent between regions. There are gaps in knowledge about the tumour, even among experts. Guidelines have been published, but they provide a consensus, rather than empirical evidence.

Currently there are two principal data collection projects in operation: the LifeRaft Group in the USA, which is patient-driven, and the UK National Cancer Registry [doesn't Dr Wood mean the National Cancer Intelligence Centre (NCIC)? There doesn't appear to be a UK National Cancer Registry on the Department of Health's website. However there is a National Cancer Registration System. ed]

The NHS West Midlands Trust also provides information on all sarcomas, including muscle and bone tumours, and GISTs.

At Royal Gwent Hospital in Newport, Wales, Dr Wood and his colleague consultant Dr Ashraf Rasheed are in the process of establishing the GIST Patient Registry, which will provide a database of information, and the Tissue Bank, which will incorporate mutation testing. [Mutation involves changes in genetic material that can be spontaneous or caused by external factors such as radiation and poisoning. These changes can lead to loss of gene function.]

The information stored will include:

  • Patient characteristics
  • Symptoms
  • Diagnosis, including scans
  • Tumour characteristics and mutation status
  • Details of previous surgery
  • Drug treatment
  • Types of monitoring
  • Outcomes

The project will cover the whole of the UK in an attempt to make "more meaningful" data available to hospitals and doctors. It will involve recognised surgeons and oncologists, and offer a central database. Recruitment to the project will be via invited hospitals and GIST Cancer UK patients.

Dr Wood stressed that it would be an observational study - it would not in any way interfere with treatment. Data would be drawn from patients' notes, and tissue samples offered.


The aims of the project are to increase the amount of patient data, identify patterns and correlations (types of surgery, etc), improve diagnosis and improve treatment.

Royal Gwent Hospital is currently in talks with Novartis on funding, and it hopes the supplier will make a decision by the end of this year.

Dr Wood urged all GIST Cancer UK patients to come on board.


Responding to a question from the floor about data, Dr Wood announced that the project would be seeking to hire a full-time research Fellow [academic] to help in the provision of clean technical data.

He also emphasised the need for volunteers to get involved early in 2010. Patients can get in touch with the project through the Mailtalk forum or via the GIST Cancer UK website.

"We want patients to be involved with this," he said. "We are seeking new patients so that we can establish prospective data, rather than retrospective data. Mutation testing results go to the Marsden, cancer research bodies and companies like Novartis, but we want results reported back to the patient.

"There's not much trust and no co-operation. Dr Rasheed and I will drive through this new opening-up."

Posted: 12/01/2010


Dr Zahir Amin

Consultant radiologist, University College Hospital, London

Dr Amin began by reminding attendees that GISTs are often originally formed between the smooth muscle layers of the gastrointestinal tract. Around 60-70% are located in the stomach and 25-35% originate in the small bowel. They usually grow outward from the stomach's lining.

They most commonly occur in people aged 40 to 80, and with small GISTs up to 2cm long there are no symptoms. Symptomatic GISTs, on the other hand, are usually large and may ulcerate or bleed, which means they are identified through experiencing abdominal pain, nausea, visible outward distension of the stomach or GI bleeding. Complications can include perforation, obstruction and haemorrhage.


This is the main method for viewing inside a patient's stomach or bowel to examine a tumour. This involves inserting a narrow tube down the patient's oesophagus. The tube incorporates a light source and camera at its tip. A GIST tumour may be seen projecting into the stomach lumen as a bulge which may be smooth since the inner lining of the stomach is usually not affected. However, there may be a small central ulcer seen. On the minus side, the origin of the tumour may be difficult to see, as most of it may be on the outside of the GI tract. This is sometimes called an "extraluminal" or "exophytic" tumour.


Computed tomography is an imaging method whereby the human body is x-rayed layer by layer, and a series of cross-sectional images built up. A contrast medium is injected into the patient, or they drink some water which distends the stomach, and then multiple x-ray tube-detectors are rotated round the patient. They measure tissue density to provide contrast for imaging purposes. Multislice CT, as it is sometimes known, is quick, widely available and produces good-quality images. The thin x-ray slices are usually just 1-3mm thick, and the resultant image helps to distinguish between normal and abnormal tissue.

CT will show the GIST tumour mass usually very clearly and pick up signs of necrosis or dead tissue and haemorrhage. It will show any displacement of adjacent organs or vessels, which can occur when the GIST is large.

When a CT scan has been taken for something else, GISTs may be picked up incidentally.

Dr Amin then demonstrated how the effectiveness of imatinib can be monitored by showing a slide with pre-imatinib and post-imatinib images. The patient had a gastric GIST with liver metastases, and the CT showed clearly that substantial regression had taken place. In addition to size reduction, imatinib treatment causes tumour necrosis resulting in loss of tumour perfusion and the GIST then appears much darker on the CT after the contrast injection. Sometimes the tumour can appear larger after imatinib treatment but much darker on CT indicating the treatment is still effective and causing tumour cell death (necrosis).

Dr Amin pointed out that if necrosis is already present within a tumour it can be difficult to assess, but most GISTs have some solid parts at their edge.

Ultrasound (U/S)

This uses high-frequency sound waves and is a safe method using no radiation. The GIST's tissue and edges reflect back sound to create a good image. An initial U/S scan can suggest a diagnosis, and it is also good for problem solving, such as with a lesion of the liver. It is useful for guiding biopsies in the liver and abdomen for the removal of a thin core of tumour tissue for examination.

Endoscopic Ultrasound (EU/S)

This method involves using a narrow tube with a transducer at its tip. This picks up and sends sound waves. The technique is used for assessing the wall of the oesophagus, stomach duodenum and adjacent organs or vessels. It is also used to guide biopsies.

EU/S is useful for measuring small GISTs and for confirming the site of origin. It can also help assess the morphology of the tumour - that is to say its shape, structure and location. In particular EU/S can identify features that suggest the tumour is of an aggressive nature. These include: above 4cm in size, an irregular outline, spaces in the cyst or necrosis.

When a biopsy is required, a doctor will often use the Fine Needle Aspiration (FNA) technique, where a thin needle is inserted into the tumour through the abdominal wall to take out a sample of tissue. However, with GISTs this method does not always give enough tissue for a definite diagnosis.


What is MRI? It stands for "magnetic resonance imaging", and it incorporates a high field-strength magnet and uses radio-frequency waves. It creates an image based on the movement of protons in fat and water. A proton is a sub-atomic particle that carries an electric charge and is found in the nucleus of each atom. The images produced give excellent soft-tissue contrast.

Dr Amin warned that MRI scans take up to 40 minutes to create an image and are very noisy.

MRI has is better at defining differences in tissues than CT. MRI is especially useful in case of renal failure, in planning surgery for rectal GISTs or if the patient is allergic to the CT contrast medium. Having said that, Dr Amin went on to state that MRI provides similar information to CT, and it can be used in conjunction with CT, for example, in evaluating indeterminate liver lesions originally picked up by a CT scan. MRI requires greater expertise to operate, so it is not so freely available to patients.


PET stands for "positron emission tomography" and is often used in conjunction with a radio-active glucose compound (FDG). FDG is injected into the patient, concentrates in any very metabolically active tissue, including the tumour, and the PET scanner then forms images of how the FDG is distributed round the body, based on the detection of emitted positrons. A positron is the counterpart of an electron and carries an electric charge. A radiologist then assesses the images to make a diagnosis.

A PET scan can be combined with a basic CT scan and usually takes 30-90 minutes to complete. It is possible to then fuse both scans to give a precise picture. In 80% of cases there will be a metabolic response to a drug which can be seen within 24 hours. However a PET scan may not be able to pick up certain small tumours.

FDG-PET is able to detect GISTs but it is not normally used in initial diagnoses. Like MRI, availability is limited and it is expensive. Its main benefit is in helping to evaluate response to treatment in specific cases using RECIST criteria.

RECIST analysis is based on the sum of the longest diameters of the lesion. It does not take into account biological changes within the tumour and it can provide misleading data if the tumour gets larger but with extensive necrosis.

Overall, PET is recommended if the CT scan is unclear, there is a discrepancy between the CT scan and the clinical findings, or the option of surgery is borderline.


So, CT is the main imaging method. It suggests a diagnosis by assessing the localised size and surroundings. Generally imaging findings may not be specific, and it is necessary to make pathological diagnosis on tissue based on morphology and immunohistochemistry. This is the use of staining to diagnose abnormal cells found in cancerous tumours to confirm the diagnosis.


Technique - Mainly Used For:

  • Ultrasound (U/S) - mainly used for Liver and guided biopsies
  • Endoscopic ultrasound (EU/S) - mainly used for Small GISTs in stomach
  • MRI - mainly used for Liver, rectal GIST
  • FDG-PET - mainly used for Response evaluation


Question: "I have had many scans in the past few years. Are records kept of how much radiation a patient has been exposed to?"

Dr Amin: "No. Each scan is requested separately, so if you are involved with more than one hospital the records will be separate."

Judith Robinson (chair): "Perhaps it would be a good idea to introduce a system that involves medical staff keeping a tally of radiation doses on the front of patients' notes?"

Patient: "On the frequency of scans, how high-risk are they? I believe guidelines should be introduced."

Judith Robinson: "On the general question of patients being high-risk, I have been assessed in the "high-risk" category and was fine until a met was found after 7.5 years. We should never be signed off unless we are in the low risk group.. I'm so glad I wasn't signed off."

Question: "Which types of imaging technique would you recommend?"

Dr Amin: "For chest, abdomen, pelvis and liver problems, I would say CT is better than MRI. If MRI is chosen, it should be used in conjunction with an injection."

Question: "How long should I starve myself before a scan?"

Dr Amin: "This is done because you may vomit as a result of the injection. No food for two hours prior should be OK. More than four hours is not necessary."

Posted: 10/01/2010


(Report by Judith Robinson, Chair, GIST Cancer UK)

Gist Cancer UK is a charitable trust run by our trustees. The trustees play a crucial role and the board consists of seven volunteers, made up of carers and patients. Unfortunately there is a vacancy because - as we all know too well - this disease can strike at any time. After organising the venue for today's event, Chris Rickman died. We miss him dearly, and are truly grateful for the contribution he has made to this group. Chris would have wanted things to carry on, so we are now looking for a trustee to complete the board. Perhaps another carer would like to come forward?

Raising awareness

Following a meeting of the trustees, we believe that we need to raise awareness among the medical profession, both GPs and consultants about GIST, and about us. We need to distribute our GIST posters around GPs' surgeries - so please contact me, or you can download the poster from the website.


Funds are constantly needed for GIST Cancer UK, so if you can donate something please email treasurer Dr Irene Cook. Her email address is on the website. There is also a Gift Aid certificate that you can use, which will bring us approximately an extra 28% on top of what you have given.


We are now part of the representative patient group at NICE, and we have recently won a resounding victory with NICE's announcement that it has decided to approve Sutent [sunitinib]. We are also working with NICE on adjuvant use of imatinib and the reappraisal of imatinib.for metastatic or un-resectable GIST.


A survey has been carried out today on the side-effects of Glivec [imatinib] and sunitinib. Results should be on this website soon.

Research programme

Royal Gwent Hospital, Newport [see "UK National GIST Registry and Tissue Bank" above] is conducting a research project involving data collection and follow-up of GIST patients. We have been invited in at the planning stage. There are other research projects which have invited patient input



Judith Robinson introduced the final session of the day - a workshop that separated carers from patients so that members of each group could share their experiences and feelings with each other . She went to explain that sometimes the carer finds the situation more difficult than the patient does. The carer is there to listen, and that carer is needed because the patient needs someone to talk to. Perhaps we need to consider whether we could offer training or education to carers to support them in their difficult role. Perhaps counselling skills could be necessary. Having said that, the patient often tends to be more positive about the situation than the carer, because they focus on the fact that GIST is a life-threatening disease.

"As a patient myself," continued Judith, "I am beginning to realise that the carer worries more than you think. Perhaps when there is a joint visit to the oncologist, both the patient and the carer should have the opportunity to speak to the oncologist alone. In my experience, the relationship with the specialist nurse is key. Patient or carer, or both, should be able to email the specialist nurse, or email the nurse's secretary, and leave a message for the nurse to ring them back. It's all about communication."

The Workshop

Each group was given a set of questions to trigger conversation. They were then invited to summarise their thoughts on a sheet of paper.

Question: Is it important for you that patient and carer are together when you see your consultant? Would you also like to talk to the consultant alone?

Patients: One patient group said they would like to see the consultant alone for a while at the first appointment and for the result of important tests. But another group emphasised that it was "important to have a second pair of ears".

A third group said that it could sometimes be helpful to have their carer present because "they hear things you don't", but sometimes this was not helpful if the carer was in denial. One patient complained that their carer sometimes asked questions of the consultant that the patient did not want them to.

Carers: Several carers thought it would be a good idea for a separate meeting when they felt the patient might not be able to cope with the answer on prognosis or progression. Some felt carers needed more information than the patient.

Question: Do you sometimes feel the other person has not taken on board what you have said?

Patients: There was a mixed response here. One patient commented: "Some relatives feel they have to be positive, and so they might not be being realistic."

Carers: If the patient has not understood the carer, they may not admit it because they do not want to burden the carer.

Question: Are there things you wish you could say to the other person, but you find them too difficult to express?

Patients: There was a general feeling that that was not the case with partners, but with other relatives and friends this was often true.

Carers: The really difficult issues are "What if?" and planning for the worst. Carers thought that guidance would be useful on where the person they cared for could go to talk with someone who was less emotionally involved.

Question: Have you used any material from Macmillan or elsewhere to help this communication, and was it helpful?

Patients: The general feeling among patients was that there was a lack of specific information on GIST.

Carers: Two carers had used Macmillan material and found it useful.

Question: Are there any tips you would like to give the medical team about how best to communicate with patients and carers?

Patients: One group were quite clear in their advice. "Consultants and GPs can be abrupt. We always prefer a tactful but honest approach."

Several groups emphasised that neither side should feel rushed, or give that impression. It is important that doctors check how up-to-date the patient is on their current status.

One group said that they preferred seeing the same person every time, as registrars are often not familiar with a patient's case history, or don't have the specialised knowledge of GIST. Email or telephone access to a consultant or named contact such as a specialist nurse can be important if circumstances change between appointments.

Carers: More general information on the pain and side-effects of surgery and medication would be useful. One carer said this information "should not have to be dragged out of the medical team". Another carer had an important tip on delivering the diagnosis. "Oncologists and cancer teams are generally very good, but could the diagnosis be given gently, please! It needs a specialist nurse to take the time to fully explain the diagnosis," they said. Carers said more advice should be given about post-operative care.

Other comments

Patient: "We think it is more difficult for carers. Will they ask for help about emotional or clinical issues?"

Patient: "Sometimes it's hard to share emotional responses. It would be good to use Mailtalk for expressing emotions and also for getting advice about where to go for counselling."

Carers: "Carers are an essential part of the GIST process. They could benefit from a counselling course, if it was available."

At the end of the discussion Judith announced that tea was ready, and she encouraged participants to use this time to talk to the people they came with about their experience of the workshop.


Both patients and carers said that the Workshop had been an extremely useful exercise in that it enabled them to share with others in the same situation at a deeper level than they could have done had their partner/carer been present. One of the professionals present at the workshop said that it had changed his perception of the emotional impact GIST has on patient and their carers.

Because of this positive feedback we plan to incorporate more of this kind of activity at our future meetings.

Posted: 11/11/2009