Endoscopic ultrasound (EU/S)
MRI
FDG-PET
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PATIENT INFORMATION MEETINGGIST Support 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 Support 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.) 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 Simon Wood Consultant surgeon Royal Gwent Hospital, Newport, Wales
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:
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 Support 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. AimsThe 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 Support UK patients to come on board. FeedbackResponding 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 Support 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 GIST: DIAGNOSIS AND EVALUATION WITH IMAGINGDr 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.
ENDOSCOPYThis 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.
CTComputed 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.
MRIWhat 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.
PETPET 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.
ConclusionSo, 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. Summary
FEEDBACKQuestion: “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 CURRENT STATUS AND FUTURE PLANS(Report by Judith Robinson, Chair, GIST Support UK) Gist Support 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 awarenessFollowing 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. FundingFunds are constantly needed for GIST Support 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. NICEWe 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.
SurveyA survey has been carried out today on the side-effects of Glivec [imatinib] and sunitinib. Results should be on this website soon.
Research programmeRoyal 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 THE “SHARING INFORMATION” WORKSHOPIntroductionJudith 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 WorkshopEach 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 commentsPatient: “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. WORKSHOP FEEDBACKBoth 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 |
