Sarcoma, COVID, science, BREXIT and Trump – what a year

I have not written in this blog since January of 2020. It has been some year and while I have been busy, the COVID-19 tragedy has been unfolding and our government has been deepening its self-created chaos around Brexit. Meanwhile the politics of the world have been changing. It is impossible to disentangle it all but I will have a go at summarising the year.

I have been busy because the world of sarcoma and canecr advocacy more generally doesn’t substantially change despite the pandemic. With sarcoma we have a disease which is rare, heterogenous (about 150 different histologies), and inherently complex. It is difficult to diagnose, requires specialist knowledge to treat and effective medical treatment options are scarce. There is limited access to research for patients and many studies of new treatments fail. Effective patient advocacy to help create change is desperately needed around the world but is largely unfunded. My life in the last four years has been about travelling Europe for meetings and events. That shuddered dramatically to a halt in March. I have not missed airports, life has been interesting on Zoom and Teams but I have missed the conversations over coffee or lunch.

The COVID-19 pandemic has been tragic. Our government has consistently acted too late at the cost of lives, it has splashed money into the hands of incompetents and crooks (known as friends), ignored existing skills in the community (to benefit its friends), and its leader has lied, bumbled and blustered throughout. Ministers have ignored the importance of giving the public ‘understanding’ and relied on them to try to process information for themselves. Giving clear and simple explanations is not patronising, giving simplistic ones is. What we needed was the advice to avoid closed unventilated space, avoid crowds, avoid close conversation – instead we were told to wash our hands, wear a mask, and keep 2m away from others. One is about contexts of life and prevention and is simple. The other is about self-protection without any reason or context and is simplistic. No wonder you got crowds, people gathering indoors and politicians having unmasked close chats. In addition there has been an almost pathological addiction to big populist promises that cannot be kept, not least is the world-class test and trace disaster.

What stems from this could be an exciting opportunity for science, which has seen itself in the headlines more than ever before. The politicians mantra of “following the science” (which it soon became obvious that they weren’t) subtly morphed into “being advised by the science” (which allowed them to openly ignore it). Fortunately we do have a lot of honest scientists who will not be over-awed or bullied and who can communicate effectively. If we are lucky the demonstrations of the influence science can have should excite more young people.

The treachery of Brexit has also been a huge collection of extended promises. Lies built upon lies, reality ignored, vain hopes sold to the electorate which then evaporated, ideas of quick agreement became extended negotiations, irrational short term solutions disappeared as the real world emerged – it was predictable. The extended promises of 2016 were unfounded and sadly those who manufactured those lies came into power determined to deliver their desired outcome without any of the benefits they had similarly promised and causing a level of damage not done to the British economy and social-life since the 1940s. A Cabinet of self-serving Westminster cowboys, yes-men too lily-livered to stand up to bullying and admit to what was right. And now they are threatening to use gunboats in the English Channel!

Deepening the tragedy on the world stage has been the pantomime dame of American politics. The cringing performances of a coiffed man with a 10-year old’s vocabulary, the emotional sensitivity of a steam hammer and a view of the world that comes from one of those crazy mirror stalls at a funfair, moved us beyond laughter, to tears, to sending condolences to American friends. Welcome to the new 80-year old king, he will need to show steel to steal the show as the next act unfolds.

Oh dear, what a year. Well that’s it, I’ve had my say.

Your diagnosis madam – collateral damage

No cancer patient should be seen as collateral damage after a clinical procedure which diagnoses  otherwise unexpected cancer.

That is what happens with most uterine leiomyosarcoma and some other gynaecological sarcoma diagnoses. These patients are among the worst treated cancer patients because not only are they usually diagnosed after radical surgery, many are subjected to inappropriate adjuvant radiotherapy with consequential long term side effects, and some are given adjuvant chemotherapy which has no evidence of benefit – except perhaps to assuage the guilt of their gynaecologist.

The gynaecology community has been challenged over these issues yet takes few steps to try to answer the problems. In the UK we are moving forward by requiring all these patients to be referred for joint care at diagnosis by a specialist sarcoma team. Hopefully this will reduce the burden of adjuvant therapy, improve follow-up and open up access to appropriate new sarcoma treatments. This has met consistent resistance but the NHS is enforcing it. Elsewhere in the world it does not of course apply.

Gynae sarcomas account for less than 1% of all gynae cancers. Many are hidden by uterine fibroids and are only discovered after surgery. Sometimes that surgery breaks up fibroids and distributes sarcoma cells around. As far as gynaecologists are concerned that is ‘tough luck’, nothing they could have done better, disease spreads, patient dies (eventually), collateral damage.

Where there are problems in healthcare there is usually research. Around gynae sarcomas the only research is with drugs for post-operative adjuvant therapy or advanced disease, valuable but not enough and nothing yet found to make a significant difference. Gynae and sarcoma specialists collaborate in these studies. There is no research into trying to identify a biomarker from blood or imaging to try and achieve a diagnosis before surgery where fibroids are concerned. There must be other ideas. No-one is ‘thinking outside the box’. Sarcoma clinicians cannot do that research, they don’t see the patients until they are already collateral damage.

I first met gynae sarcoma patients online in email support lists. I have known several personally and I know some survivors. Of course for some the journey has been supported by good and caring clinicians and its not all bad news. But it is a hidden issue, no-one talks about it. There are so few of these patients to start with that creating a campaign has been impossible. We need to energise this in different ways, its not enough just to be shouting from the sidelines.

The first step is for healthcare systems to openly recognise this problem. In the UK we are slowly moving forward. The NHS is taking steps because of pressure from the sarcoma community. NICE needs to recognise that it has failed these patients. NIHR and other research funders should identify and fund a priority. NCRI should be encouraging researchers. Women’s cancer advocates need to wake up to this challenge. But that is just the UK.

Lets care about collateral damage, research could solve this.

Sarcoma diagnosis – a new challenge emerges  

Conversations at the recent British Sarcoma Group conference in London (an excellent event) brought up a growing problem with a recent change in the guidance for GPs considering potential cancer symptoms. The idea is that when a GP has suspicions about a soft-tissue lump he can order a direct ultra-sound scan.  When I questioned the chair of the NICE Guideline Group during its development I was assured they had considered all outcomes and my concerns were dismissed. As far as I am aware no specific sarcoma expertise was consulted during the development process.

The question which needs answering is whether the new approach is working for the benefit of patients and/or the NHS.

Prior to the change three years ago a GP was advised to make a 2-week referral to a specialist centre if certain clinical symptoms existed.  More patients were actually being diagnosed from non-urgent secondary care referrals or other routes than from the 2-week system. Hence the change, which made direct access to x-rays (for suspected bone sarcomas) and ultra-sound (for soft-tissue tumours) available to GPs so they can diagnose non-malignant tumours or determine uncertainty which requires expertise.

The problems arise because sarcomas are rare, diverse in their histology and can appear in any location on the body – in fact ‘typical’ is not an adjective applicable to sarcoma. The ratio of benign soft tissue tumours to malignant sarcomas is over 100:1. The rarity means ultra-sound imaging technicians have little familiarity with sarcoma although for bone tumours X-rays can be definitive.

We are finding that ultra-sound imaging reports will err on the safe side. Some tumours are clearly benign but if they have any doubt they are likely to say that they cannot be certain.  So what do GPs do with this uncertainty?  Their uncertainty boundary has shifted so they make a 2-week referral to a specialist centre, even for a tumour which under the old guidance would have been recognised as benign.

Thus specialist sarcoma centres are being overwhelmed by urgent referrals for ‘uncertain’ tumours. Diagnostic expertise is now being exercised by nurses operating triage clinics. This allows their consultant colleagues to spend longer with the fewer potentially malignant cases who come through the triage.  The people with sarcoma who would benefit from urgent attention are being hidden in a cloud of benign conditions until a late moment in the process. GPs are allowed to opt out of responsibility for diagnosing the benign condition, hiding behind the ‘uncertain’ ultra-sound. Those with benign conditions suffer a journey to a regional specialist cancer centre only to be told by a nurse that their highly qualified GP must re-consider their case.

Patients are not being respected. The problem is not the principle of the new guidance, but the implementation which has shifted the workload inappropriately. Those picking up the pieces are the specialist centres overloaded with diagnostic work. The new guidance was intended to help them and it is doubtful whether this is leading to earlier diagnosis of malignant tumours either.  The whole approach needs review in the light of the experience the sarcoma centres are reporting and any review must be in collaboration with them, rather than imposed by a committee led from primary care.

Patient Involvement and the Push for Technology

Our new Heath Secretary, Matt Hancock, owns up to being a technology enthusiast and he is already pushing some technology ideas even though the knees of his trousers can have barely touched the underside of his desk.

I often refer to the lessons of the past. Where technology in the NHS is concerned the lesson of NPfIT needs to come to mind. This was the ambition of connecting all NHS patient records and making them available on demand in every GP practice and every hospital. The National Programme for IT started in the early 2000s and was cancelled by the incoming Coalition government in 2010 by which time, a later parliamentary analysis showed, it had cost over £12bn.

What were the lessons?

It was a simple ambition. However no-one could specify it and the core principle for developing a big IT system is that there must be a specification. Technical requirements regularly changed, contractors came and went, some were sacked, enthusiasm grew, cost extensions were agreed by Ministers unquestioned because the ambition was so good. It was all top-down. A few sample GPs were asked what they needed to do their job effectively. Patients were not asked about having all their clinical data gathered together, they were told what was planned and asked to agree (I went to one of those meetings). Voices raising concerns about data privacy were not listened to. Voices raising concerns about the ability of the IT industry to deliver the scale of ambition were just scare-mongers – even though some of them had impeccable IT credentials.

Today’s IT implementations are dominated by apps and small computers (also known as smartphones). It is about putting “information in the hands of the people”. If they use it – success; if they don’t – failure. Costs are minimal and there seems to be a queue of potential providers willing to invest. So what’s wrong with that?

Nothing, if some underlying principles are observed.

First principle – specification. Any app which the NHS agrees to use must have an agreed specification with data portability and security probably top of the list.

Second principle – implications, which will be derived from an independent impact assessment. At the top of the list is clinical safety. And then there are the structural issues. For example an app aimed at working 20-35 years olds in a local area could change behaviour patterns and affect resourcing. Provision of those services to other age groups may deteriorate. Success can be more damaging than failure, it may create demands on the NHS which are difficult and costly to meet.

Third principle – patient involvement. This is less about “will patients use it?” and more about understanding the issues which patients will face while they are using it and having used it. This avoids ‘top-down’ thinking. An ongoing patient group (not a one-off meeting) which actively questions the developer should be an important pre-requisite for NHS approval.

Fourth – the rare situation. Anything clinical, relevant to the app, must be dealt with. It is no good having a remote GP system which fails to investigate a possible sarcoma, and it is no good triggering an investigation and overloading the NHS when a clinical examination (which cannot be done by an app) might deliver a diagnosis. This kind of situation is not uncommon and is not limited to diagnostic work. So called artificial intelligence can offer a lot but it is not the answer to everything – it has no hands.

Fifth – beware the hype. Anyone predicting cost savings in a marketing presentation is talking rubbish. There may well be savings but they will take time to deliver and will not reach anywhere near the scale that enthusiasts predict. Similarly anyone predicting volumes of take-up without having patients already advising them is talking through their hat.

Sixth – sustainability. Do not deal with anyone who has no certainty of being able to deliver their service in two or three years time. Anyone coming into health provision in this kind of way must be able to deliver over time.

Having a list like this might seem like building bureaucratic hoops for an entrepreneurial app developer to jump through. But, think hard.  Every one of these points is about the patient. It is not in the patient interest for any of these points to be avoided. It may be that enthusiasm and opportunity seem dominant for an enterprising Health Secretary but patients are at the heart of this.

Matt Hancock may be seeking a culture shift in the NHS towards greater use of small and large IT systems which can resolve some of the gaps in NHS service provision, open up new opportunities, and improve patient experience and the outcomes of treatment. However you cannot ‘put the patient at the centre’ of what you are doing if you do not involve patients in that development.

Involvement is not a single person, not a single meeting, not a presentation to a group. It is about active and ongoing engagement which allows patients to listen and understand, then relate their personal experience and the experience of others from whom they have learned, to a proposed development, to consider implications, to engage in conversations, to visualise, to use their common sense natural abilities to help deliver something which can benefit other patients.


A Challenging Month

I don’t often write about what I have been doing, more about what I am thinking. But June into July has been quite a month.

I joined the ECCO Methods in Cancer Clinical Research Workshop in June. This is held at Zeist in the Netherlands, not far from Utrecht. It used to be held at Flims in Switzerland, an extraordinary venue, but increasingly inaccessible and costly in these days of austerity. I enjoyed six year at Flims from 2007 to 2012, as the only patient on a faculty of 40 supporting 80 Fellows attending the course. The pattern is similar at Zeist. I had the real pleasure of working with 40 of the young oncologists developing studies. It was demanding and called on all my knowledge of cancer and of being a patient, whether that was developed from personal experience or from those who have shared their experiences with me over the years.

Coming home called for a rest. However my blood pressure medication needed adjusting and I was becoming increasingly unhappy with the actual medication itself. It seemed to be causing hazy periods, lack of concentration and increased fatigue. However I was also getting increasingly chesty, with a tightness on my breathing. Then on Wednesday I fell. I had my amputation over ten years ago and have never fallen since. Until now. How it happened showed how woolly my thinking had become. I failed to complete the fitting of my prothesis properly and walked out of the artificial leg. Gravity took over. I landed on the stump, the pain was excruciating. No breaks, just some severe bruising and a few scratches. Spent the rest of the day recovering and started moving around again the following day but I was getting more and more breathless.

By Friday morning I was an emergency admission to hospital in Shrewsbury. After various tests and discussions it was decided I had nothing more complicated than a lung infection and after 60 hours on oxygen, some strong antibiotics and a valuable review of my cardiac functioning I was released home on Tuesday. See earlier blog.

Thursday was my cancer follow-up. Different hospital, the Robert Jones & Agnes Hunt Hospital in Oswestry, and because it is a specialist orthopaedic hospital which does not handle medical cases the contrasts could not be greater. In addition the new cancer unit which was only opened last year is a pleasure to visit. I know the team well, they have treated me too often, and they are doing some really good pioneering work on, for example, nurse-led triage. All OK and I was grateful for a careful review of all the imaging of my lungs from recent days. It is now five years since my latest treatment but with my chequered history of recurrences I am continuing in follow-up.

Two moments of special pleasure. The hospital has started a bio-bank, so I was able to sign up and offer more tissue for research. Then they told me they had acquired a new consultant surgeon and introduced me to her. The surgical team now has more female surgeons than male, a situation I could see coming but did not expect so quickly. It has been one of my true pleasures in 16 years of patient advocacy to see the shift in oncology away from male dominance. It is also evident that women are bringing new ideas into research and it can only work to the benefit of patients.

Back home, no more appointments. Still not right but getting better every day.

Oncology – a changing environment

In a few weeks time I shall have my 18th cancer birthday – a coming of age. I have had cancer for over 25% of my life (just). Although some experiences which cancer patients face have passed me by there are many which remain strong in memory. Some are confined to sarcoma, so I am something of a specialist.

Last week I had my latest check-up – all clear once again. It is hard to explain the sense of relief this brings. Those who do not know what it is to live under seemingly constant threat cannot imagine the tension and anxiety that dominates the days before a check-up. My last treatment is now three and a half years ago (thoracic metastectomy). It took time to recover and get going again, and then I was hit by back problems. Now I have diabetes and other niggling issues to address, so its not an easy downhill run.

I talked about this check-up anxiety (often known as scanxiety) with Dr Mike Leahy, my consultant. Mike has looked after me for twelve years, has managed recurrent diagnoses, helped and advised on many issues, but has never had to treat me. He is a medical oncologist and his training and scientific knowledge primarily concern drugs to treat cancer. Sarcoma throws up some of the most challenging situations, disease like Ewings sarcoma, rare tumours with few (if any) effective treatments, cancers in young people, so the challenges are many. He has been working with members of the team at the Christie Hospital on the anxiety issue as part of a pilot project (Christie PlanBe) looking at the holistic needs of patients with advanced disease. The aim is to develop and teach strategies for self-management and it was heartening to find that some of the strategies I have developed for myself are included and are working for others too.

We also talked about the recent paper in BMJ by retired oncologist Dr Peter Wise and some of the responses he has had. My feeling is that this paper gives an accurate view of what is happening worldwide. The debate comes down to the issue of the patient choice between chemotherapy for advanced cancer and ‘something else’. Too often the ‘something else’ is no treatment, so patients naturally choose chemotherapy. Doctors in healthcare systems which pay them for providing treatment don’t get paid if there is no treatment, so they are quite happy about this decision. In the NHS they get their salary regardless of the decision so there is a trend, and I believe it is a growing trend, to make it clear to patients that symptomatic treatment (sometimes called palliative care) is an appropriate alternative to chemotherapy for advanced disease which is incurable. Painting this in a positive way, while retaining the balance with treatment which patients and families often mistakenly regard as curative, is not easy. There is evidence from studies in Holland that patients and their families cling to false hope. Doctors have to recognise this and find ways of communicating prognosis in a sensitive manner. Patients also want to keep contact with consultants they know when they take this decision, so the role of oncologist as palliative care specialist is evolving.

I have met and worked with many oncologists in my 18 years. Mike has a special place as “my” doctor. That experience builds perspective and he gives an important depth to my understanding. I recognise in oncologists clever people with a high motivation and commitment to patient benefit. Ultimately this is uncompromising in the face of evidence. Importantly the evidence is now steadily tilting the balance away from chemotherapy where the prognosis is poor and oncologists are thinking hard about how they act in this changing environment.


Research and advanced sarcoma

The research results reported at ASCO for sarcoma are of special interest this year because of the rise of immunotherapy as a cancer treatment. The expectation is that because sarcomas rely on gene mutations which the immune system fails to recognise it would, like other cancers, respond to immunotherapy. The treatment relies on two approaches, stimulating the immune system to overcome cancer’s ability to evade recognition and to block the ability which tumour cells have to hide from the immune response. This combination of approaches works well with melanoma, although the side effects are challenging and can require in-patient treatment.

Yes, it has been tried with sarcomas, albeit so far in small exploratory studies. The problem is that these explorations are not showing that any benefit results. It is very early days and we must hope that more extensive studies will deliver positive results. Researchers are optimistic but I have been around long enough to be cautious.

All kinds of treatments have been trialled to treat advanced sarcoma. A few individual patients have benefitted each time, I am one of them, but no drug treatment has come through to show the degree of patient benefit that would allow it to replace doxorubicin as the first chemotherapy of choice, the worldwide clinical standard.

Having all our eggs in one basket is not a strategy anyone wants to subscribe to. So research with other approaches to treating advanced sarcoma continues. It is an impressive list:

  • Molecular alterations to doxorubicin to improve its effectiveness and remove side effects
  • Innovative cytotoxic treatments using natural toxins
  • Better understanding of sarcoma mutations with the aim of matching existing or innovative new drugs to treat them
  • Exploring new drugs prospectively based on tumour characteristics, often through so-called basket studies
  • Exploring combinations of treatments which individually don’t quite make it, combining them with doxorubicin or with new drugs
  • Looking for a maintenance therapy which may prevent metastases
  • Developing new non-invasive techniques for removing lung metastases (eg RFA, SABR)
  • Understanding the value of surgery, especially with new techniques such as laser knife
  • Looking at the quality of life for patients with advanced disease, especially when further ‘curative’ treatment would be futile

Some of these approaches are showing positive results. It is increasingly important for clinicians to know the histological sub-type of sarcoma and to have genetic information. Alternative first-line treatment is currently for a small minority so it means that foreseeably patients with advanced sarcoma will continue to face the future with uncertainty.

Only a minority of sarcoma patients develop metastatic disease. Some will have recurrences which are local in their nature and although it is not nice to have to undergo further treatment they can be curable. There is hope the longer you can stay alive, so if the disease starts progressing taking every valid opportunity that arises is a realistic strategy. Our oncologists will be as encouraging as they can be within the bounds of realism when metastases appear. However where choices are offered there is little evidence which will definitively support one treatment approach over any other, although where surgery for metastases is offered my advice is to take it. Surgery is only a valid approach for a small proportion of patients, those with so-called oligometastases.

The annual ASCO event brings together specialists from across the globe, no other cancer event is comparable. Sarcoma is no exception to the rule. While it is exciting to see the range of research which is being undertaken to improve matters for patients it is a sad fact that in bone and soft tissue sarcoma we have not yet seen the kinds of breakthrough that have taken place in breast cancer, leukaemia, kidney cancer or more recently in melanoma. There is the example of GIST, a sensation at ASCO 15 years ago. It shows that it can be done in sarcoma, so there is hope, our specialist scientists and clinical researchers believe it can be done, we have to support and encourage them.




Last week NICE published its revised Guidance for Suspected Cancer. Long awaited. Publication was held up because of the general election – why medical guidance should be politicised in this way only bureaucrats can tell you.

The sarcoma community had a sense of trepidation about this publication because the old guidance for GPs about sarcoma symptoms was being jettisoned. Its not that the old guidance could be regarded as particularly effective, nor indeed has there ever been a formal evaluation of it to provide evidence, its just that familiarity has a certain comfort. The British Sarcoma Group had reaffirmed the NICE guidelines when it published its own Guidance five years ago.

Now the GP is expected to have a suspicion of sarcoma based on the fact that the patient has a lump which is growing in size. It may be deep, it may be painful, or not. In certain circumstances that patient should be referred to a tertiary specialist centre immediately (on a 2-week wait) but if the GP has several possible alternative diagnoses he should refer for a ‘direct access’ ultra-sound scan (for soft tissue sarcoma) or x-ray (for bone sarcoma). ‘Direct access’ means that the GP receives the x-ray/scan reports and is responsible for follow-up action. The GP can prioritise that referral as ‘urgent’ (must be done within 2 weeks) or ‘very urgent’ (completed within 48 hours)if the patient is a child.

Because the new Guidance is symptom based and gives a GP access to diagnostic tests we can anticipate that the number of GP visits a patient makes (typically 5 or more) will reduce. We can also anticipate that the number of benign lumps sent to specialist centres will reduce. However we can also anticipate that ultra-sound may create new problems. Most ultra-sound services offered for GP direct access are from the private sector. They are often staffed by NHS radiographers but even so few ultra-sonographers will have experience of diagnosing sarcoma. How well their scans are reviewed by trained radiologists is irrelevant because few radiologists understand sarcoma either.

Thus we can anticipate the potential for two effects, one welcome and one unwelcome.

The welcome effect will be a reduction in the number of benign tumours being referred to sarcoma specialist centres.

The unwelcome one is the potential for a rise in late diagnosis and A&E diagnosis of sarcoma because “false negative” information has been given to a GP, who has also inappropriately re-assured the patient.

We shall keep a close eye on the NHS data on referral pathways in the coming years to see if the latter concern does appear.

Sarcoma UK’s initiatives on raising sarcoma awareness and using the idea of a golf ball as a suspicion indicator seem to be having an effect, although it is still too early to try and evaluate that through what is happening in specialist centres. The BMJ OnLine Learning Module developed by the team in Liverpool is freely available through Sarcoma UK’s support. There are pressures within the British Sarcoma Group to reduce the size of the suspicious lump to 40mm (currently 50mm) and the new approach by NICE opens the way for this.

What is happening through the charities and what NICE is offering fit well together, hopefully opening up the way for a general improvement in sarcoma diagnosis.

I do have one small complaint about the new NICE Guidance. In its glossary it defines sarcoma as:

A particular type of cancer, usually affecting muscles or bones.

I think that this is inaccurate, glib and pathetic. It has about as much value as saying “Dogs are a particular type of animal, usually with a leg at each corner”.  It is sloppy original writing, bad editing and deficient clinical oversight, regardless of the context in which it is published, in this case a glossary.

What does “particular type” mean? “Usually” is non-specific and has different implications for each reader’s understanding. About 50% of all sarcomas are visceral (GIST, gynae, retroperitoneal, abdominal). Most paediatric sarcomas affect muscle or bone but in adults bone sarcomas are uncommon. There are vastly greater numbers of adults than children diagnosed with sarcoma.

We need major organisations to take sarcoma seriously, so NICE (and others) please note that a more accurate and useful description is needed in the future.


Its been a strange few weeks. Getting back mobile has been my main priority after nearly three months of immobility and then slowly increasing capability. I had been looking for ward to getting into the swim again and was able to attend the Cancer Outcomes Conference organised in Belfast by NCIN, more of that in a later blog.

On Saturday I was at the Sarcoma UK Talking Research event in Manchester. What a great day ! Sarah Macdonald (SUK’s Head of Research) had done a tremendous job in selecting and briefing top scientists and clinicians and the audience of patients and carers (about 200) (plus a few non-speaking doctors and nurses) engaged and learned. Everyone spoke at a sensible level of understanding, scientific terms were explained, and concepts which are difficult to get hold of used explanatory slides. As a scientific meeting with a patient focus it was exemplary. I’ve been to a few in my time but none to beat this.

Dr Gareth Veal from Newcastle gave the best explanation of cancer pharmacology and its role in helping get the best dose of drug suitable for an individual patient. A translational study is running alongside the EuroEwing 2012 clinical trial so the Newcastle unit is turning its research understanding into clinical value and, hopefully, increased benefit for each patient in the study.

Dr Robin Young is a medical oncologist in Sheffield with an academic research role as well. I first met him some years ago when he was working on his PhD and was impressed by his commitment to a dual clinical/science role. He was working on angiosarcoma then and his work has taken an unusual direction looking at the commonalities between angiosarcoma in humans and dogs. This stemmed from discussions at the British Sarcoma Group four years ago with a leading veterinary oncologist. Angiosarcoma is common in larger dogs. The tumour similarities are apparently strong and the study is looking at how development of new treatments might be trialled in dogs and those results could benefit human patients too.

I had the privilege of giving a short lecture in memory of Paul Robson, who died in a heart operation in January. Paul was a long-standing sarcoma survivor, an active advocate locally in the East Midlands and latterly working with Sarcoma UK nationally too, on behalf of sarcoma patients. My personal reflections about involvement in research as a patient go back more than 12 years, starting when times were different. I kept it short. I was joined by Mike Francis and Chris Copland who are both deeply involved with EuroEwing. Chris is also attending and speaking at international paediatric cancer conferences making the patient/carer voice heard. Sarah Welby, the sarcoma research nurse from the Christie Hospital, described her role and how they worked to ensure that patients in clinical studies received the best care.

After lunch Professor Ted Hupp from Edinburgh talked about the p53 gene and his research into how this gene, which seems ubiquitous in cancer, probably has a key role to play in the treatment of sarcomas. A study with an experimental drug targeting p53 showed benefit for a cohort of liposarcoma patients. Sadly the company owning the agent decided against developing it further – a story we have heard rather too often with sarcoma drugs. It is clear that the pharmaceutical industry business model is far too focussed on common cancers.

Dr Paul Huang from the ICR in London looked at drug resistance to tyrosine kinase inhibitors, with a focus on pazopanib (Votrient). He started with a diagram of a cancer cell, and then said it was a simplified version, to everyone’s gasp of horror. He described how pathways could be defined and using a London Underground metaphor explained how cancer was clever, and found new routes to its objective when its first route was blocked. Understanding this in sarcoma patients will help identify those more suited to targeted therapy and also point to other therapies if applicable. This research is opening up new understanding of how cells work and could have ramifications much more widely for development of tyrosine kinase inhibition.

The last speaker was Dr Nick Gough, a palliative care specialist who undertook one of the first studies funded by Sarcoma UK. It is an extensive view of quality of life in advanced sarcoma with both qualitative and quantitative elements to it. It generated a lot of interesting data and Nick provided an updated view (there have been posters and previous presentations at various conferences). The final paper has been prepared and will hopefully be in print later in the year or early 2016.

The morning session was chaired by Dr Mike Leahy, medical oncologist at the Christie, and the afternoon session by Professor Lee Jeys, orthopaedic surgeon from Birmingham and Chair of the NCRI Clinical Studies Group for Sarcoma. Both have a relaxed and easy approach which patients readily appreciate and which the speakers could echo. There was real appreciation of the accessibility of the talks.

To close the day Richard Whitehead MBE, Sarcoma UK’s patron, Paralympics gold medal winner and the world’s leading marathon runner on prosthetics, talked about his 40-day 40-marathons run from John O’Groats to Lands End. A truly inspiring man, a great story and a real high with which to finish a great day.

Quality Standard for Sarcoma creates new opportunities


I found the publication of the NICE Quality Standard for Sarcoma (link at bottom of page) quite personally rewarding. The process of developing it was fairly intense and took into account a lot of views, some quite trenchantly held. To be a patient in a process at NICE is always one of the better patient involvement experiences there is. I wrote about the Quality Standard a few weeks ago and I have had time to think more about it.

This simple set of six statements could generate a big evolution in the way that sarcoma treatment is delivered in England and I hope the opportunity is not missed. The statements are aimed at Commissioners, Networks and service providers. They set standards for improving the outcomes for patients built upon recent evidence and real experience. They are also intended to help patients understand what to expect.

Sarcoma treatment structures have been reorganised over the past eight years following the NICE guidance on which I also worked. Improving Outcomes for People with Sarcoma has been instrumental in helping us arrive at the 12 treatment specialist centres we have today. Five of them treat bone and soft tissue sarcoma, the other seven soft tissue alone. All of them have a Clinical Nurse Specialist within the multi-disciplinary team (MDT), alongside surgeons, oncologists, radiologists and pathologists.

Some of these centres are multi-site – hospitals linking together to provide the total service. Many of these treatment teams also undertake outreach. Some have outlying diagnostic and treatment units with clinicians who are “extended members” of the MDT. Some also hold clinics in hospitals other than their home centres – recognising that patients often live far from the main site.

Sarcoma specialist MDTs all have a character of their own, reflecting the host organisations and the individual doctors who work in them. Some have special interests (eg younger patients, people with retroperitoneal tumours), or additional qualifications and skills (eg specialist surgical techniques), many are involved in research, and some have oncologists who have an interest in supporting sarcoma patients with gynae or gastrointestinal tumours.

Now the Quality Standard is opening the way for greater networking.

One of the new standards requires retroperitoneal sarcomas to only be treated where there is specific expertise. It is for the NHS England Sarcoma CRG to determine which centres have expertise but the NICE committee was clear that such centres should have a high patient volume and thus be few in number.

All sarcoma MDTs are required to make public the pathways they have with other treatment teams eg for metastectomy and the specific special skills which they have within their own team. This should open up a better understanding of how individual patient experience can be improved. Could this lead to referral between sarcoma MDTs to maximise patient outcomes?

Gynae and GI MDTs are also required to collaborate with sarcoma MDTs on patients they diagnose with sarcoma. This is already a requirement but it is rather patchy and it is questionable whether it adds value for many patients. The Quality Standard puts it onto a new footing. GI and Gynae cancer teams will have to reach out to Sarcoma MDTs because they must agree a care plan for every sarcoma patient. This should build stronger links with Gynae and GI centres which can benefit patients (eg access to trials) but will only do so if the sarcoma teams take active involvement in their care.

There is the opportunity for new guidelines. Bringing practitioners together to share knowledge and experience to create consensus guidelines and discuss treatment protocols is a huge opportunity, if only the cost of doing it can be found. I hope that the British Sarcoma Group can rise to this challenge.

So the next three years will be very interesting. We have a new government promising that the NHS will have new funding. NHS England is starting to look better organised. NICE will remain largely unchanged and with questionable influence. CQC is making waves. Cancer Peer Review is being revitalised. Yes, we might (hopefully) have a practicable process for evaluating and funding new drugs. In all this I want so see sarcoma MDTs working more closely together with some more formal networking and I do believe that we will see an improvement in outcomes for sarcoma patients.

The NICE Quality Standard for Sarcoma can be found here: