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LMS and the UK's National Health Service
written by Roger - Updated Nov 2002
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UK practice is to diagnose "soft tissue sarcoma" - rarely does a consultant voluntarily pass on the sub-type/histology information to patients, although he does give it to GPs. If you are in any doubt as to which type of sarcoma you have, and want to be better informed, you can check with the consultant or ask your GP, who should have all the information. One may need to be quite tough about insisting on knowing it because some of the more old-fashioned medics are a bit precious about it.

You may be told the tumour grade when diagnosed. If not the GP should also be able to give the tumour grade from the hospital report. He probably will not have the full path lab report or any radiologist reports from CT or MRI scans but these are not secret documents and he can ask for copies of them, and give copies to you.
Getting Treatment
The NHS operates a system of standard treatments. There is a body of published guidance about any illness to which any consultant called on to treat it should refer. However soft tissue sarcoma is rare enough (about 1300 cases a year) and LMS even rarer (under 200 cases a year) that most general surgeons and GPs will never come across a single case during their career and even cancer specialists in general hospitals are unlikely to very often.

Sadly there are cases of misdiagnosis by pathologists and instances where consultants have relied on their general knowledge of cancer, rather than getting the latest guidance on treatment. Different parts of the country operate different practices in referring patients for confirmation of diagnosis and applicable treatment at an experienced sarcoma centre, so it is more likely that an error will take place if such a centre is not consulted.

LMS is a rare disease and treatment options are being tested all the time. There are specialist sarcoma teams in very few places. The busiest are at the Royal Marsden in London, the Royal Orthopaedic in Birmingham and the Christie Hospital in Manchester. All operate a multi-disciplinary team system with medical oncologists, surgeons, experienced pathologists and consultant radiologists. The other main centres tend to be in university hospitals (Middlesex, Nottingham, Sheffield, Leeds and Newcsatle are the ones we know of).

The importance of being seen by one of the specialist teams is not just that they will be able to confirm a diagnosis. They also have access to the latest worldwide thinking about what treatment is most applicable. They are also involved in both national and European programmes of clinical trials and the drug companies regard them as the centres of excellence for testing new drugs. A listing of open trials funded through government or charity routes (but not drug company trials) is available in the NCRN Trials Portfolio.

Remember that a second opinion is the right of every NHS patient. There is a culture in the UK of not wanting to make a fuss, and there are many in the medical profession who appear to do everything they can to discourage second opinions. It may take time to get an appointment but it is worth asking to be referred for a second opinion at one of the major sarcoma treatment centres if you have any doubts at all.

Surgery is the first line of treatment. For some people it is all that is required and there is no recurrence. No one is clear why, when there has been good surgery with clear margins round any excised lump, the disease then spreads in some people and doesn't in others.

Experienced sarcoma oncologists do not generally follow-up good surgery for LMS with either radiation or chemotherapy although some other sarcomas are treated differently. Statistically over a long period of time there is no evidence that post-operative chemotherapy offers any benefits to LMS patients. Radiation will be used if the margins round surgery are not clear. It is not unknown for a cancer consultant at a general hospital to talk of following up surgery with chemotherapy and if this is proposed to an LMS patient careful research and questioning should be undertaken before agreeing. This is definitely a point where a second opinion from a sarcoma unit should be sought.

So, after good first surgery, it's get on with life if you can.

Recurrence will be treated with surgery again if possible. Distant metastasis, which is usually to the lungs or liver, can only be spotted by CT scans. Follow up by CT scanning every 3 months is common in the US, but in the UK it seems to be six monthly with intermediate chest x-rays. You might have to push to be scanned in the absence of any other evidence of disease. UK sarcoma specialists have an interest in maintaining what they call "quality of life". Scans are a source of anxiety while waiting for the appointment and then for the results but that is not a reason for less frequent scanning - there are not enough scanners or radiographers in the UK.

Chemotherapy comes into play as the primary treatment with inoperable tumours and may be a first line of treatment of choice in the case of lung tumours. The two drugs most frequently used are Doxorubicin and Ifosfamide. Both are amongst the strongest chemo drugs available . A course is usually 6 cycles, three weeks apart - with a review after two cycles to see whether any impact is being made. Its not an enjoyable experience but it doesn't hurt.

New drugs are coming into the standard treatment regimes during 2001/02. They will include new chemotherapy treatments (some of which are now being widely used in the USA) although because the drugs (such as Doxil and the taxanes) are costly it is likely they will be second-line treatments only used if the standard drugs have no impact.
Whatever happened to the NHS Patient Charter?
This was quietly abandoned by the UK Government early in 2001. Many people believe it was a clear commitment to 'service' which the NHS Guide does not satisfactorily or fully replace but that as it represented undeliverable standards the Government had to cancel it.

For cancer patients, and those with rare cancers in particular, the 'right' to a second opinion is no longer a specific commitment. It remains, however, at the discretion of a clinician or your GP. You can request a second opinion and this request should not be unreasonably refused. The complaint procedure which can be actioned if it is refused and you are not happy with the reasons given is detailed in the NHS Guide. The NHS offers an on-screen interactive guide to treatment and care which details the NHS's responsibilities and commitments to its patients.
How Long Does It Go On For?
LMS is for life. Those people who recover well from first surgery and never have a recurrence will nonetheless be monitored closely for at least five years, and then at least annually thereafter.

If you join those of us who have recurrence the visits to hospital will become a regular feature of life - whether for treatment or for monitoring. It would be easy to get depressed, the prospects are not helped by the over-crowded nature of so many UK hospitals brought about by decades of under-investment.

There are many people who believe that survival is as much in the mind as in the treatment. After two major surgeries and a full course of Ifosfamide I feel in good health. I have not asked for a 'prognosis' - for an estimate of how long this will all go on. My view is that life is for living. I also believe that information empowers me and enables me to discuss my disease with the consultant from a position of knowledge. I enjoy those discussions, although I look forward to the day when we have them less frequently.
Some Cancer Centres in England
Experts in Sarcoma are based at these hospitals.

Christie Hospital N.H.S. Trust, Manchester, England, M20 4BX
Professor John Radford 0161 446 3753
Dr Paul Lorigan 0161 446 3472
Mr Lester Barr (surgeon) 0161 291 4185

University College Hospital, 235 Euston Road, London NW1 2BU
Dr Jeremy Whelan 020 7380 9346

Newcastle General Hospital, Newcastle Upon Tyne, England, NE4 6BE
Dr Mark Verrill 0191 219 4200

Royal Marsden NHS Trust, London, England, SW3 6JJ
Professor Ian Judson 020 8722 4302
Mr Meirion Thomas (surgeon)

St. James's Hospital, Leeds, England, LS9 7TF
Dr Michael Leahy 0113 243 31 44

Weston Park Hospital, Sheffield, England, S1O 2SJ
Professor Penella Woll
Dr Martin Robinson 0114 226 5065

Royal Orthopaedic Hospital, Birmingham, England B31 2AP
Mr Robert Grimer (surgeon) 0121 685 4150

Note: this list is not necessarily comprehensive and does not cover Wales, Scotland or Northern Ireland. It was compiled from knowledge of UK specialists from LMS List members and from research programme data. All the above have taken (or are taking) a lead role in sarcoma treatment clinical trials.

The information on this site is not a substitute for professional medical advice. You should not use this information to diagnose or treat a health problem or disease without consulting with your doctor. Please consult your doctor with any questions or concerns you may have regarding your condition. Copyright 2001-2010 LMSWEBSITE