A call for research proposals was made on 20th March 2009.
The full call can be downloaded here.
In September 2009 the Trust decided to fund four projects in this first programme of work. The total investment will be approximatel;y £250,000 over two years.
There are two projects at the Institute of Cancer Research (part of the University of London and associated with the Royal Marsden Hospital), and one at the University of Sheffield. These projects are looking at rhabdomyosarcoma, innovative techniques in limb surgery, and the causes of sarcoma.
The fourth project is a clinical study at the Royal Marsden Hospital looking at the quality of life of patients being treated advanced sarcoma. This will inform the development of clinical practice and also gather valuable data to help with health economic analysis of new treatments.
The Trust anticipates making an annual call for projects to the research community.
Enquiries about our research programme can be made by email to firstname.lastname@example.org.
The Sarcoma Trust is committed to peer review of research proposals by a multi-disciplinary panel. Our standard Terms and Conditions are available to download.
The Sarcoma Trust is UK registered charity number 1119848
Clinical trials are the process by which new treatments are tested, evaluated, and the evidence gathered so that the decisions can be made about changing standard practice. Cancer clinical trials are defined in three Phases. Phase 1 trials are often ‘first-in-man’ – treatments which have never been tried on human patients before. Drug trials will be looking for safety information, side effects, and considering dosage issues. Numbers recruited will be small, sometimes no more than 10 patients. Phase 2 trials will be comparing dosages, assessing side effects and looking at outcomes. The numbers of patients recruited may be quite small (50 or so) but the data gathered will be the basis for later large scale trials. Occasionally Phase 2 trials are randomised so that alternative therapies can be compared.
Phase 3 trials are most often ‘randomised controlled trials’ (or RCTs). Here a standard therapy is compared with one or more new ones. Patients are randomly selected to receive one of the treatments, usually selected by computer to ensure there can be no bias. These trials are mostly large scale and can have thousands of patients in them, although with a rare cancer like sarcoma the numbers are more likely to be in the hundreds.
The Medical Research Council’s website has some very useful pages about clinical trials, including some ideas for questions you might wish to ask if you are considering entering a clinical trial. Another valuable source of information and advice is the National Electronic Library of Health website.
The United Kingdom Clinical Research Collaboration (UKCRC) has an excellent booklet which can be downloaded from its website explaining clinical trials. Print copies can also be requested.
Phase 1 and 2 trials are most likely to be at individual hospitals, or a very small number of hospitals. Phase 3 trials in sarcoma are often developed as pan-European trials through the EORTC (European Organisation for Research and Treatment of Cancer) and may be available in many UK treatment centres.
To find which trials are currently open in sarcoma follow the links below. No log-in is required in any of these databases. You may need to use the search facilities offered. Where necessary use the search term ‘sarcoma’ to keep the widest options available.
Cancer Help UK – a ‘plain English’ database of clinical trials in the UK maintained by Cancer Research UK
UK based Phase 3 trials (includes European trials open in the UK)
European Phase 3 trials (includes those open in the UK)
Worldwide database of cancer research
Questions you might want to ask your doctors
Because the treatment plan for every patient will be different we cannot answer every question here. The best people to help you understand your treatment are your consultant and the specialist nurse. The pages linked from here suggest some questions you might want to ask.
You can download a file with all these questions on it which you can edit and add your own questions as well. It is in Microsoft Word format and is also available as a Rich Text Format (.rtf) file and as an Acrobat (.pdf) file. The Acrobat file cannot be edited.
Asking about sarcoma
What will happen to me
Understanding the tests
Follow-up and Monitoring
Download files: Microsoft Word Rich text format Acrobat
If you need help with Adobe Acrobat format files please click here.
Internet soft tissue sarcoma resources
This page is a resource for UK patients diagnosed with a soft tissue sarcoma. It provides links to web pages around the world which offer information to patients. We have looked at the information to ensure that there is no attempt to offer a diagnostic service and in each case we have no significant concerns about accuracy. We cannot, however, guarantee absolute accuracy.
Each of these links will open in a new browser window so you may need to close each window when you have finished with it in order to keep your desktop manageable. Please advise us if you find any of the links do not work.
Cancer Help UK
Cancer Help is run by Cancer Research UK – the leading charity. Excellent material including ‘Questions for Your Doctors’. As well as the link use the site’s search function as there are further references within the site.
The UK’s cancer information charity. This is the sarcoma booklet which is also available in print. The website is worth searching further.
Royal Marsden Hospital
The Sarcoma Unit pages of one of the larger treatment centres in the UK. Team is named and there are even photos. Very good rundown of treatment options.
Christie Hospital, Manchester
The Sarcoma Unit pages of one of another of the larger treatment centres in the UK. Team is named. Very good rundown of types of sarcoma and treatments. Links to rest of Christie Hospital’s pages.
Sarcoma PDQ …
PDQ is the US National Cancer Institute’s (NCI’s) comprehensive cancer information database. The patient files carry links to the professionals files. … for adult soft tissue sarcoma This link is to the patient file for adult soft tissue sarcomas including GIST. … for child hood rhabdomyosarcoma The PDQ patient file for childhood rhabdomyosarcoma. … for other childhood soft tissue The PDQ patient file for non-rhabdo childhood sts.
Soft Tissue Sarcoma People
A site developed by Prof Eggermont, Head of Surgical Oncology at the Daniel den Hoed Cancer Center and the Laboratory for Experimental Surgical Oncology at Erasmus University Rotterdam. The site also looks at Melanomas.
The excellent pages from one of the USA’s leading cancer centres, Memorial Sloan Kettering in New York. The paediatric pages look at the whole spectrum of paediatric sarcoma including bone tumours. A Physician’s View One of MSKCC’s leading sarcoma clinicians, Dr Murray Brennan, wrote this important piece for a US support group website.
Dr George Demetri is one of the leading sarcoma oncologists, based in Boston USA, and runs this site himself.
Cancer Source is an information service of iKnowMed which provides tools to support oncologists. This link is to their sarcoma pages.
US based patient group which also fund raises for research.
A site dedicated to one of the commoner soft tissue sarcomas (still a very rare disease). Compiled by a doctor/medical researcher who is also a patient.”
Soft tissue sarcoma – further information
This objective of this page is to help you understand how sarcoma can develop, based on its ‘natural history’.
Sarcomas frequently recur. Some recurrences will be local, rather than distant. These locally recurrent tumours can often be removed surgically, especially if they are on a limb, and the long term prognosis for such patients is no poorer as a result.
About 50% of sarcoma patients will have a recurrence involving metastasis, or secondary disease, in a part of the body distant from the site of the primary tumour. The most usual site for metastasis is the lungs although the liver and, more rarely, the lymph system, can be affected. Because many sarcomas are painless while they grow it is not uncommon for a patient to have disease which has advanced in this way when first diagnosed.
The first treatment option considered for metastasis will be surgery, if that is possible. As the most common metastatic site is the lungs the opinion of a specialist thoracic surgeon may be sought. However, many tumours will be unresectable or will be too numerous or widespread to allow surgery. Tumours can also recur again after a successful lung resection. In most cases the usual course of treatment will then be chemotherapy.
The two standard chemotherapy treatments available today are Doxorubicin and Ifosfamide. Response rates measured in clinical trials vary and trials comparing different dosages and patterns of dosage are still being undertaken.
Doxorubicin is usually administered as an out-patient. Ifosfamide may be given as an in-patient or as an out-patient, depending on the dosage decision. The standard treatment pattern is six cycles with treatment being repeated over a three week period.
If you are considering chemotherapy ask the consultant or Clinical Nurse Specialist for any information they may have. There is also a very good booklet available from Cancer Bacup (call 020 7696 9003) or look on their website.
Sarcoma is regarded as an ‘orphan’ cancer, which means that it has few strong relationships with other more common cancers. It is also a rare disease and thus active research into new treatments is not regarded as a priority by many in the scientific or pharmaceutical world. This means that new treatments, particularly drug treatments for advanced sarcoma, are badly needed.
Early stage clinical trials of new treatments are often undertaken at the principal specialist sarcoma centres. The most promising recent drug for soft tissue sarcoma is known as Yondelis (or ET743). It is not available in the UK or Europe at present as the results of trials in the USA are still awaited.
Information on sarcoma clinical trials
Treating soft tissue sarcoma
Soft tissue sarcomas can affect any part of the body. The most frequent location is the leg accounting for about half of all diagnoses. A significant proportion of cases are within the body – in the abdominal space or the retroperitoneum.
The first objective for every patient is an accurate diagnosis. It is becoming less common than it once was for a procedure, even surgery, to be undertaken before a full diagnosis is achieved but it can still happen.
Good surgery can be a cure. The surgeon will look to achieve clear margins of disease-free tissue around the lump when he cuts it out. These margins will be checked in the pathology laboratory. If gaining clear margins is difficult it is probable that a course of radiotherapy will be proposed.
Although no longer common, amputation may be the surest way to remove the cancer when in a leg or arm. Limb salvage techniques are improving all the time but large tumours in awkward locations can make that approach impracticable.
The aim is to ensure that the patient is free of any evidence of the disease when initial treatment finishes.
Sarcomas, however, do tend to recur so careful monitoring is important, certainly for the first two years following surgery. Monitoring will include a clinical examination, a chest x-ray (in some circumstances CT scans), and other simple tests, usually three monthly for a period, then six monthly, then annually.
There is plenty of evidence that treatment at a specialist treatment centre delivers the best results for patients. While initial surgery may be at the hands of a surgeon skilled in treating the location where the sarcoma initially grew the follow-up is best undertaken in conjunction with a sarcoma centre. These centres are usually at the large teaching hospitals, specialist orthopaedic hospitals, or at specialist cancer hospitals.
See Further Information for more about advanced disease.
Specialist sarcoma treatment centres
There is good evidence from around the world that treatment of rare diseases in specialist centres improves outcomes for the patients.
Initial treatment for sarcoma may be local but in many cases a patient will be referred to a sarcoma specialist on diagnosis and before any treatment. All patients should be followed-up and monitored in association with a specialist centre.
Bone sarcomas, where treatment involves radical surgery which can include amputation or the use of replacement artificial bones (endoprostheses), are treated at specialist orthopaedic oncology units. The two largest centres are in London (Stanmore) and Birmingham, with centres in Newcastle and Bristol also each handling significant numbers. There are numerous smaller units linked to these centres which handle diagnosis, some surgery, follow-up and,, because they are closer to the patient’s home, they may also give chemotherapy treatment. In each case medical oncology support may come from a neighbouring university hospital.
Soft tissue sarcomas on the limbs will also be treated at these orthopaedic centres while most of the leading teaching hospitals and specialist cancer hospitals also have sarcoma units and will treat all kinds of soft tissue sarcoma, not just sarcoma on limbs.
The UK’s largest treatment centre for soft tissue sarcoma is at the Royal Marsden Hospital in London. Other specialist treatment centres include the Christie (Manchester), Weston Park (Sheffield), UCH (London), (St James) Leeds and there are units in many teaching hospitals around the country.
The key requirement of a specialist centre is that it has a team of at least surgeon, medical and clinical oncologists, pathologist, radiologist and specialist cancer nurses who have a focus for a significant part of their time on sarcoma treatment. This ‘multi-disciplinary team’ should operate as a team, considering together the most appropriate treatment at every stage for every one of their patients.
An evaluation process is being developed to assess the standard of such teams. Some professional disciplines (notable pathology) already have a quality assurance approach using both self-assessment and peer-review in an attempt to drive up standards.
The larger specialist centres also have a research capability, with staff dedicated to running clinical trials and laboratory resources to support them.
The doctors involved in clinical research are also likely to be in regular contact with their international colleagues treating sarcoma, whether in Europe, America or Asia. They may be members of the leading international associations which provide a professional forum for research papers and discussion on sarcoma – the Connective Tissue Oncology Society and the European Musculo-Skeletal Oncology Society.
Treatment of Sarcoma privately in the UK
‘Going private’ is a common route to avoiding the delays which can happen in the NHS. Some people also like the fact that the doctors usually spend more time with their patients and the clinics are less crowded and more personal.
Sadly we hear too many examples of private medicine letting down sarcoma patients. Diagnosing a strange lump seems simple, and in most cases it is. However a malignant lump (about 1 in 200 of all lumps) can be very hard to diagnose without a biopsy (taking a sample and studying it in the laboratory) and a scan (using CT, MRI or Ultra-Sound). Failing to suspect that a lump should be biopsied is too common – though less common than it was at one time – especially if additional fees can be earned by undertaking surgery.
Most doctors to which a GP would refer a patient privately will not be sarcoma specialists. Sarcoma is rarely suspected by GPs so even if they are aware of a sarcoma specialist in their local area the patient may not be referred to an expert. Where sarcoma is specifically suspected matters will be better and an accurate diagnosis is likely to be made much more quickly, with an expert involved.
Cancer care in the NHS is managed through Multi-Disciplinary Teams (MDTs) of doctors, nurses and other professionals. Private practice invariably relies on single doctors making all the decisions. In many illnesses this is adequate but with sarcoma it leaves potential gaps to the disadvantage of the patient. There is ample evidence from research studies around the world that care by an MDT improves patient outcomes.
Once a sarcoma has been diagnosed our recommendation is that patients initially treated privately should consider transferring into the NHS and into the care of a specialist sarcoma MDT. They would continue to be seen by their first doctor, if he/she is a sarcoma specialist, but they would have the benefit of added review of their progress by experts from all the relevant disciplines. Having the private cover available should there be delays in having scans, or receiving radiotherapy, is a big asset and using paid access to resources when there is a need is a perfectly justifiable approach. After all, it releases pressure on the NHS so other patients benefit from those resources.
NICE – The National Institute of Health and Clinical Excellence
NICE is the body responsible for authorising new treatments for use in the NHS. It has been set up to be independent of government ministers, although many of its investigations are determined by ministers. It looks at the clinical evidence (from practice research and clinical trials) and the economic impact of new technologies and techniques before arriving at its recommendations.
Its recommendations are binding on the NHS in England and Wales. Some of them take time to implement, particularly if it involves the re-structuring of service provision. The NHS in Scotland works differently. The Scottish Intercollegiate Guidelines Network (SIGN) produces practice guidelines for doctors and decisions on paying for new drugs are taken by the Scottish Medicines Consortium.
The NICE process is consultative and can become very extended, especially where new treatments are costly. The economic assessment is always made from the viewpoint of the NHS and there are complex academic methods which try and put a value on improved patient quality of life. Patient groups such as Sarcoma UK are invited to contribute evidence and there are patients on many NICE consultative groups.
NICE decisions about cancer drugs have recently become more contentious as it has become quite clear that NICE is making recommendations on the basis of overall cost, and allowing Primary Care Trusts (which fund treatment) to make decisions without full regard for the benefit of each individual patient.
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NICE and Sarcoma
Three sarcoma patients have recently served on the NICE Guidelines Development Group for Sarcoma. This has looked at the structure of service provision in the NHS to get the best possible outcomes for patients with sarcoma.
The recommendations of this group were published in March 2006 and are due to be implemented by the NHS in England and Wales in the autumn of 2006.
Download the public summary of the recommendations, the full recommendations, and the full manual produced by NICE. Other documents are also available on the NICE website.
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NICE and GIST
Sarcoma UK and GIST Support UK worked together representing patient interest on the NICE Technology Appraisal of Imatinib for the Treatment of Advanced and Metastatic GIST during 2003 and 2004.
The Guidance was published in November 2004 and while we welcomed their publication more recent research findings mean that we are now extremely unhappy about the implications for patients. Fortunately a number of Primary Care Trusts (PCTs) are prepared to review the latest evidence and a number of patients are now being treated for advanced disease in line with accepted best practice, rather than the NICE Guidelines.
If you are affected by a PCT decision to refuse treatment with imatinib (Glivec), despite the wishes of your doctors, Sarcoma UK can help present information for an appeal to your PCT. Please use our contact form.
This is a situation which is unacceptable. Representations are being made to The Department of Health and to NICE requesting a review.
The NICE Guidelines as published
The latest clinical guidance, developed by a group of GIST specialist doctors (courtesy of the Association of Upper GI Surgeons, AUGIS).
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This page updated 16th April 2006
The NHS and sarcoma treatment
The National Health Service has no clinical guidelines for treatment of sarcoma although accepted standard practice is based on evidence from research studies and clinical trials. The rarity of the disease means that very few hospitals have the specialist skills and knowledge to treat patients and the doctors themselves keep in touch with developments in research, sharing their own experience, so that the best understanding of how to treat patients is used everywhere.
In each region of the UK cancer services are co-ordinated through cancer networks. Not all networks have a sarcoma specialist unit within their borders but all the Network Clinical Leads will know of their closest specialist centre and the irregular referral process which applied until recently is becoming a thing of the past.
Local Primary Care Trusts (PCTs) are responsible for funding treatment for patients living in their area. In practice they club together to buy the services of specialist units for the treatment of rare diseases.
The NHS makes some special provision for the treatment of bone sarcomas through the National Specialist Commissioning process. Six centres are currently fully funded to provide treatment – the Royal National Orthopaedic Hospital in Stanmore (north of London) and the Royal Orthopaedic Hospital in Birmingham, are the two largest. The others are at Oswestry, Oxford, Newcastle and Bristol. Patients from Wales, Scotland and Northern Ireland are usually also referred to either Birmingham or Stanmore.
Another special case is the treatment of GIST with Glivec (imatinib). The action of this drug has been so exceptional that it was licensed in both the USA and Europe in record time. The NHS in Scotland agreed its use in 2002 and acceptance in England and Wales finally came in November 2004. Many GIST patients are treated by specialist gastrointestinal cancer teams because their expertise in surgery is usually needed.