Connect info@sarcoma.org.uk www.sarcoma.org.uk
The bone & soft tissue cancer charity
Winter 20 13
All hands on deck! Lindsay Evans sails the seas for sarcoma See page 3
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The race of your life
Follow Lindsay on board the World’s Clipper Yacht Race
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Sarcoma Voices
“The Big Conversation!” – Join in and sign up today!
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Rhabdomyosarcomas
Insight from the West Midlands Knowledge & Intelligence Team
From the Chief Executive
Sarcoma UK’s key messages UK is the main charity in the UK focusing on all • Sarcoma types of sarcoma UK provides information and support for • Sarcoma anyone affected by sarcoma –patients, carers, family and friends Sarcoma UK’s aim is to achieve the best possible standard of treatment and care for patients with sarcoma. It does this through: Funding scientific and medical research into causes and treatments; Delivering a range of support and information services covering all aspects of sarcoma; Raising awareness of sarcoma amongst the public, healthcare professionals and policy makers; Campaigning on behalf of sarcoma patients for improved treatment and care Sarcoma UK relies solely on voluntary donations and fundraising activities to fund its work Sarcoma UK is staffed by a small professional team, managed by a board of trustees (many with personal experience of sarcoma), and supported by experts in the sarcoma field Sarcoma UK works collaboratively with healthcare professionals and other cancer charities
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s 2013 comes to a close, it’s a good time to reflect back on the year, as well as look to the future. This year, Sarcoma UK has provided more sarcoma information and support and raised more awareness than ever before. Richard Whitehead Runs Britain; Sarcoma Voices; and your awe-inspiring and unique fundraising helped us strengthen the sarcoma community. We have also sadly lost dedicated friends and supporters of Sarcoma UK, and our thoughts are with all the families and people who are approaching Christmas without their loved ones. Supporter Lindsay Evans is taking positive action to change her future and in early 2014 we launch our new Strategy to 2020 to transform the landscape for everyone affected by sarcoma.
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Season’s Greetings and a very happy New Year from everyone at Sarcoma UK!
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PS Tune in to BBC Celebrity Mastermind over the Christmas period – our Patron has taken to the hot-seat!
Impact Research UK has funded over £455,000 of scientific and • Sarcoma medical research are awarded by our Research Advisory Committee • Grants to leading scientists, researchers and clinicians in centres of excellence around the UK Support Sarcoma UK offers online support to patients and carers through GroupSpaces groupspaces.com/sarcoma. Subscribers chat to each other by email and gain valuable support from other patients in the same situation Sarcoma UK provides support to 12 local sarcoma groups around the UK, and helps new groups to get set up Sarcoma UK has an active Facebook and Twitter page where the sarcoma community are able to communicate with each other in a social online environment
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Information Sarcoma UK’s patient information is rated highly amongst patients and healthcare professionals. 50,000 leaflets about sarcoma are sent out to individuals and hospitals each year
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Awareness
Sarcoma UK’s publication is distributed to a • Connect database of 5000 Voices is our active sarcoma community – • Sarcoma anyone affected by sarcoma can upload their photo and share their story – sarcoma.org.uk/voices Campaigning Sarcoma UK is an active member of Cancer 52 (alliance of charities representing less common cancers) and the Cancer Campaigning Group (alliance of cancer charities representing ‘third sector’ interests in the delivery of cancer services)
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Connect
• Sarcoma UK • Winter 13
Lindsey Bennister Chief Executive
What is sarcoma?
• Sarcomas are rare
cancers that develop in the muscle, bone, nerves, cartilage, tendons, blood vessels and the fatty and fibrous tissues
• There are around 100
different sub-types of sarcoma
• There are around 3,800 new cases of sarcoma diagnosed each year in the UK: – 3,330 people are diagnosed with a soft tissue sarcoma (including GIST) – 500 people are diagnosed with a bone sarcoma
• In Scotland, just under
300 new cases of sarcoma are diagnosed each year – Approximately 20 children and young people (0-24) are diagnosed with sarcoma each year
Types of sarcoma Sarcomas fall into three broad categories: Soft tissue cancers Primary bone cancers Gastro-intestinal stromal tumours (a type of soft tissue sarcoma found in the stomach and intestines commonly known as GIST)
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There are around 100 different sub-types of sarcoma within these broad categories. These sub-types are determined by the tissue of origin (the tissue in the body where the tumour originally formed), genetic characteristics or by other molecular analysis undertaken by expert pathologists. The most common sub-types are: Soft Tissue
• Leiomyosarcoma Fibroblastic sarcoma • Liposarcoma • Gastrointestinal stromal tumour (GIST) • Kaposi’s sarcoma (KS) • Angiosarcoma • Malignant peripheral nerve sheath • tumour (MPNST) Synovial sarcoma • Rhabdomyosarcoma • Bone • Chondrosarcoma • Osteosarcoma Ewing’s sarcoma • Chordoma • www.sarcoma.org.uk
Personal experience
Do something extraordinary! What do an accountant, rugby player, IT consultant and student all have in common? They are currently on board Team Talbot, one of twelve identical, 70-foot, stripped down racing yachts. The challenge? To win the 2013-14 World Clipper Race. The accountant? Lindsay Evans.
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came back from a skiing holiday, saw the Clipper Race poster at the tube on my way home, and decided to apply! I didn’t even consider doing anything less than the whole thing. My husband James was diagnosed with sarcoma, and unfortunately after much treatment and a painful fight he passed away. He was given some cutting edge treatment at The Royal Marsden in London, and whilst this was not successful, research into this and other treatments is so important, given the fact that the cancer is so rare. I wanted to combine raising sarcoma awareness with an adventure, and decided now was a good time to go for it! My mum was pretty unsure and worried when she heard I had signed up, but a friend of the family saw on Facebook that I was doing it, and she phoned mum up to say “wow, that’s amazing, you must be so proud...” fun, and there was a real buzz about and then I think my mum thought, the day. I was really pleased to have oh, maybe I am! She says she won’t Simon (Talbot) as a skipper – he looked sleep until I get back... Everyone else very smiley and happy, and our team I know is very excited! I have 10 seemed full of great people. I was on tickets for friends and family on the the same team as one of the girls spectator boats. The fact from my level 1 training, and that we are leaving then another girl I had from St Katherine’s “I think that met at the interview docks is great (I pushing myself which was brilliant. live in London), The training sessions so colleagues outside my comfort are great as you get from work are zone for such an extended to meet so many planning to come down, period of time will have people, and then at Crew Allocation it and friends are a significant impact was good to catch up going to come with them, and meet and throw woolly on my life” new people. I loved it, and pants at me as we came away even more excited leave! about it. The Crew Allocation was brilliant – I I think that pushing myself outside met a load of people on the train at my comfort zone for such an Waterloo (the red “uniform” jackets extended period of time will have were brilliant!) so the trip down was www.sarcoma.org.uk
a significant impact on my life. Already, completing level 1 and 2 of training have made me see that everyone has a role to play, and that you can achieve far more than you ever imagine that you can, especially as part of a team. I have also made friends with people that I would never have met in my everyday life, and it is these relationships that I believe will make a big difference to my life. I also have the role of victualler within my team, and if I can do the shopping for a 20 man crew, around the world, then at the end of this I will not be phased by a dinner party again! Work have given me a 12 month sabbatical, so there will be a job for me to come back to... I will have to return to some kind of work, but couldn’t say if it will be what I do now! When I come back I would really like to do 4 days, and do something charitable on the day off work. Lindsay Evans on calmer waters
Sarcoma UK is the main sarcoma charity in the UK, and they help to fund research into the many types of the disease. I have also met some wonderful, inspiring people through my involvement with the charity, who prove that together, we can make a difference. I view this as a huge personal challenge, also as an opportunity to raise funds and awareness of sarcoma. I hope you follow me on my journey. By the time you read this, I’ll be far out at sea! To sponsor Lindsay: justgiving.com/Lindsay-Evans1 To follow the Clipper Race (GB, Team Talbot): clipperroundtheworld.com
All picturess courtesy of Clipper Ventures
@Team_Talbot Connect
• Sarcoma UK • Winter 13
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Fundraising
One Richard Whitehead; one team 23 September 2013 and our Patron, Richard Whitehead MBE took his final steps as he ran towards the finish line, at 16:00 in Land’s End finishing 40 marathons in 40 days! Hear from those behind the scenes of Richard’s marathon, his support team and Claire McIntyre, a sarcoma patient who took part with Richard for 10 days. We want to thank everyone involved, for collectively raising funds and awareness of sarcoma the entire length of the country!
“Despite the constant aches, pains and endless hills there was one thought that kept me going. That thought was a determination to prove that anyone and everyone can live a life without limits. Once you have accepted this, you can push the barriers as far as they can go. I hope I have been able to leave that message with the people across Britain. All your support has kept me going! Thank you.” Richard Whitehead MBE, Sarcoma UK’s Patron
“Richard’s completion of the challenge has proven what those of us in his team have known for a long time, he is an incredible athlete and the one true Paralympic superhuman. Those who were in some way involved are in a unique position to fully appreciate what a difficult challenge it was to complete and how hard Rich had to work to get to the finish. It was an incredible journey and one that I am immensely proud to have been part of.”
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Tim Stevenson, Richard’s Strength and Conditioning Coach oneathlete.co.uk Connect
• Sarcoma UK • Winter 13
www.sarcoma.org.uk
Fundraising
“Running alongside Richard and Lindsey (Sarcoma UK’s Chief Executive) across the breath-taking scenery in John O’Groats will stick with me forever. Here I was, running behind a gold-medalist Paralympian, on day 1 of his epic challenge. What a once in a lifetime opportunity, and for all the sarcoma patients that ran alongside him, too. The project team were incredible and we are so lucky to be part of this and have Richard as our Patron. Huge thanks to everyone involved.” Vicki Smith, Head of Fundraising & Marketing, Sarcoma UK
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first became aware of sarcoma and Sarcoma UK when I was diagnosed with a leiomyosarcoma in February of this year, which came as a huge shock. Following surgery in March one of the most frustrating things I found was having to rest up. I’ve always kept myself pretty busy, filling any spare time, and getting out cycling, running and keeping myself healthy as often as I could. During the summer a member of my running club mentioned the Richard Whitehead Runs Britain event, I was keen to take part and combine my love of running with helping out Sarcoma UK by raising money and awareness. Initially I was torn between running a 10km stage either near Manchester where I currently live, or Lancaster where I grew up, but somehow this snowballed into running five consecutive 10km stages in the North of Scotland and then another five from Cumbria down to Manchester. And as if that wasn’t enough I decided to take my bike with me and cycle between them, and so began my 100km run and 200 mile cycle challenge.
“It was an amazing experience for me to photograph Rich on his incredible journey from John O’Groats to Land’s End, not just to witness his determination and passion running each day but the opportunity to meet the hundreds of people throughout the UK who were inspired by him running.” David Baird, Official Photographer davidbaird.photoshelter.com
“Having had the privilege of working with elite athletes for the past 20 years, Richard’s run has to be one of the greatest achievements I’ve ever witnessed. Determination, courage, positive attitude and pure class from a great man. And to see first-hand what Richard’s run meant to those people who supported him, or who simply saw him run past as they went about their day, was truly inspiring.” Rob Woodhouse, Richard’s Manager, Elite Sports elitesportsproperties.com
“It was a pleasure to work with Richard from the planning stages of his run all the way through to the celebration at the finish line in Land’s End – after an epic 40 days. We’re proud to have been part of this amazing project that has truly made a difference to so many people’s outlook on life.” Threshold Sports - thresholdsports.co.uk www.sarcoma.org.uk
With a mixture of trepidation and excitement I met Richard and the team in Dornoch in the North East of Scotland, incredulous that Richard had already run three consecutive marathons, an amazing achievement in itself, yet only a fraction of the whole challenge. This was the start of five days of crossing the country to Fort William, many big hills, thankfully not too much rain, fantastic public support, and a very hard-working team of people ensuring the smooth running of the event. For several of the stages I was the sole public runner and it was such a privilege getting to know Rich and witness his utter selflessness taking on this event, always insisting it was about who he was helping, and the example he was setting, over and above his amazing personal achievement. Highlights of the Scottish section would have to include meeting a lady who had sarcoma in 1976. She’s now helping others providing drinks and snacks by the side of the road for people completing the End to End journey. The encounters with her and other sarcoma survivors along the way have made me feel more optimistic about life and less alone. And I have to mention the wonderful surprise 33rd birthday party thrown for me at the end of the 10km stage outside Fort Augustus, I was so touched. Birthdays and getting older are definitely something to celebrate now, when six months ago my future seemed uncertain. The English section took me from Penrith down to Manchester, and it was fantastic to get to know other runners en route and swap motivations for taking part, and again seeing the enthusiasm and support from the public. A highlight has to be witnessing the speed at which Rich completed the final 10km on my penultimate day with him, absolutely phenomenal to observe a true athlete giving his all. My journey ended in South Manchester on 3 September, ready for a rest but sad to have to say goodbye to Rich and the team, and completely in awe of his resilience and determination. Claire McIntyre Connect
• Sarcoma UK • Winter 13
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Fundraising
Fundraisers – we salute you! Your dedication and commitment to our cause, never ceases to amaze us! Keep up the great work! Left: Danny Atkins and his team
The William Carling Memorial Cup £1,300 The charity rugby game that took place at new Milton RFC club, was in aid of Sarcoma UK and in memory of a great friend, William Carling – fellow rugby player for Highcliffe school. The Will Carling Memorial Cup, comes in all forms that support some of Will’s passions in life; golf days, basketball matches and now a rugby game! We played against a side from New Milton RFC, the day had massive support, with side lines packed out and the bar over flowing! The game was very equal throughout the match, with tries being scored by both teams, one after the other! With a final score of 21-20 to Highcliffe school alumni, we narrowly beat
New Milton RFC clenching our fists and gritting our teeth, we definitely weren’t going to lose! Thanks to all the support from everyone, especially New Milton RFC. Danny Atkins
The Tough Mudder crew
Tough Mudder £994 Last year we decided our annual sarcoma fundraising would be to do Tough Mudder. Eleven miles of the toughest race on the planet, designed to push us to limits of endurance. Obstacles included waist high mud run, nettle crawl, ice cold dip, electric shocks, death march up and down hill, monkey poles and 21ft half pipes, just to name a few! Together we went round the course and as challenging
as it was we had a fantastic day. We lost our good friend Grieg to sarcoma and it was our stories and thoughts of him that helped us round. Craig Scott
Sandie’s Stars £4,559 Sandie’s Stars fundraising team was originally set up to take part in a 10K run following Sandie Young’s uterine sarcoma diagnosis. Sandie’s Stars have continued to raise funds and awareness through a Zumba fundraiser, a 10K sponsored walk and a social fundraising evening. A new fundraising target of £10,000 has been set, with future plans including an 8-strong half-marathon team, a skydive and a Black & Red Ball fundraising evening. Our progress can be followed on our Facebook page “Sandie’s Stars For Sarcoma UK”. Deborah Ebbrell
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The Sandie’s Stars are (from L-R): Hanna Price, Louise Hayes, Clare Watt, Deborah Ebbrell, Serena McAlister and Meryl Miller (and Nikki Hulin, missing from the photo)
Connect
• Sarcoma UK • Winter 13
www.sarcoma.org.uk
Friends
Our friends We work collaboratively with other organisations - take a peek at what our partners are getting up to and get involved! BOOM!
Friends on the Run! £2,110 I was very apprehensive about completing the run as I’ve never done any sort of long distance running so when I agreed to sign up I did have a bit of a panic! Myself and two of my best friends that I have known for years and went to school with had been saying for ages that we would like to do something to raise money for my dad’s cancer charity, and a 10k run seemed a good place to start. I raised over £1000 before I had even completed the race. Raising this kept me so motivated with all the training and especially on the day knowing we had raised such a large amount of money it kept me going right until the end! Doing the run made me feel very proud of myself and my friends, and knowing how many people donated was very heart warming. Abbie Levitt
Sign up today! Dust off your lycra and lace up your trainers! Want to join thousands running around the famous Formula 1 circuit? Adidas Silverstone Half Marathon Northampton Sunday 2 March adidashalfmarathon.co.uk Grab a Sarcoma UK place today! fundraising@sarcoma.org.uk
www.sarcoma.org.uk
Above: Abbie Levitt and friends
Sarcoma UK is delighted to be working in partnership with the Boom Foundation in Northern Ireland. Boom was launched in spring 2013 in memory of Philip Wilson who sadly lost his battle to sarcoma in March that year, just seven weeks before he was due to get married. His fiancée, Leona Rankin set up the Foundation with the aim of filling the gaps in the support available for patients and their families. The Boom Foundation aims to raise public awareness and funds, of which 50% will go towards support initiatives in Northern Ireland including a new sarcoma support group for patients
and families and financial grants for individuals and families. The other 50% will go to Sarcoma UK to support its nationally-focused work to improve standards of treatment and care for patients in the UK and to fund vital research. Leona Rankin, founder of The Boom Foundation said: “Sarcoma UK played a hugely supportive role to Philip and I throughout his illness and through The Boom Foundation we hope to give this charity the recognition that it deserves whilst offering local support to those affected by sarcoma throughout Northern Ireland. We are delighted to be working alongside a charity with such a vast amount of knowledge and expertise. I am confident that we will accomplish great things here in Northern Ireland for those
affected by sarcoma as a result of our partnership with Sarcoma UK.” theboomfoundation.co.uk @Boom_Foundation
The Willow Foundation The only UK charity supporting seriously ill 16-40 year olds to live their lives to the full by providing unique and positive Special Days. Each unique Special Day is a positive focus away from diagnosis and treatment or marks recovery from illness. The planning, anticipation and excitement of the day boosts confidence, provides inspiration to make every moment count and creates lasting memories. willowfoundation.org.uk/ specialdays @Willow_Fdn
Brightlight BRIGHTLIGHT is a study looking at cancer care received by young people aged 13-24 years at diagnosis. You are invited to take part, providing valuable information that can improve cancer services for current and future patients. brightlightstudy.com @bR1GhTLiGhT Connect
• Sarcoma UK • Winter 13
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Research
Call for proposals to fund sarcoma research open now A quarter of a million pounds into sarcoma research!
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more research into sarcoma to the tune of a quarter of a million pounds – all thanks to your support!
hanks to fantastic support from the sarcoma community of patients, relatives, friends, health professionals and other stakeholders, we are significantly increasing the amount available for grants to sarcoma researchers this year. For each of our two previous grants rounds, we have been able to award £100,000 to sarcoma researchers, leading to innovative projects like Dr Wackerhage’s below. This year, however, we are able to fund even
Let’s break it down!
Researchers can find more information on how to apply for a research grant by visiting sarcoma.org.uk/ researcherinfo
Each grants round begins with a call for proposals. We contact networks of researchers and spread news across the sarcoma community that we are inviting applications for research grants. A researcher will write a proposal for a project looking in to a particular area of sarcoma - this may be looking at genes, a drug target, a new treatment or a study into
the effects of treatment. They let us know how much money they will need and what they will use it for. Next, we put the applications through a rigorous selection process, which involves asking experts around the world to peer review the proposals. They are assessed using a range of criteria including scientific quality, value for money, and potential to benefit sarcoma patients. Once we receive the reviews (usually three for each application)
Focus on... Dr Wackerhage and his team in Aberdeen were awarded a Sarcoma UK grant for £24,080 in February 2013 for their project TAZ & Rhabdomyosarcoma: TAZ expression in human samples, TAZ transformation of myoblasts and YAP/TAZ drug discovery. Here he describes his project for us:
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Why did you embark on this project? In contrast to many colleagues in the sarcoma field, I am an exercise physiologist trying to understand how and why muscles develop, age and how they adapt to exercise. As part of this research, we studied a gene called Yap which we thought could play a key role in building muscles. However, to our surprise we found that this gene potentially causes a sarcoma which is termed rhabdomyosarcoma (in this cancer the cells resemble developmental muscle cells). Also, we observed high levels of the ‘sibling’ of this gene, named Taz, in rhabdomyosarcomas. The current scientific literature suggests that Taz could also potentially cause several forms of cancer. So to us it made a lot of sense to study Taz in rhabdomyosarcoma and to test whether we can therapeutically target Taz and
Connect
• Sarcoma UK • Winter 13
Yap in rhabdomyosarcoma. We are therefore very grateful that we obtained funding from Sarcoma UK to carry out this project. What steps are you taking to carry out this research? Because cancer is a complex disease, collaboration with various specialists is essential for this type of research project to succeed. For instance,
Dr Wackerhage and his team
we have obtained tumour samples from Dr. Janet Shipley at Institute of Cancer Research in London which were analysed for the amount of Taz by Prof. Graeme Murray, who is a pathologist in Aberdeen with a lot of experience in sarcoma. Also, Dr Roby Urcia who is a postdoctoral researcher in my group has worked in cancer research and Abdalla Diaai, one of our PhD students who carries www.sarcoma.org.uk
Research
our Research Advisory Committee meets to discuss the applications and make recommendations on the best way to allocate the funds we have available. The final step is a trustees meeting in which the decisions on the grants are formalised, then we inform the researchers so they can get to work! Awarding grants is not the end of the story; we receive regular updates from researchers through their projects and beyond, and we keep track of published papers and other outcomes for years to come. The increased amount we have to invest is an opportunity to make a significant impact on sarcoma research for the benefit of patients. We are looking to fund groundbreaking scientific projects that will move forward the knowledge and understanding of sarcoma, always with the ultimate aim of transforming the lives of sarcoma patients in the future.
out much of the actual research is a pharmacologist from Egypt. Together with my expertise in muscle cell biology, our goal is to study whether the level of Taz is high in subforms of rhabdomyosarcoma and whether Taz can indeed transform normal cells into rhabdomyosarcoma cells. Most importantly, we will screen drug candidates that can potentially target Taz and Yap with the hope of identifying and finding new drugs against rhabdomyosarcoma. What impact could this research have? All researchers in sarcoma research hope to discover new drugs that effectively treat patients with rhabdomyosarcoma and so do we. The success rate is very low and many options have to be tried before a successful treatment is discovered. However, as the discovery of Penicillin shows it is hard to say where and when success occurs and so many options have to be explored. We very much hope that targeting Yap and Taz in rhabdomyosarcoma is effective. www.sarcoma.org.uk
Meet the new RAC members As part of continuing to improve our management of research grants and striving to gain a more varied and expert Research Advisory Committee (RAC), we are welcoming two new members to the committee. Professor Adrienne Flanagan Professor Flanagan holds positions as consultant pathologist at the Royal National Orthopaedic Hospital; honorary consultant at Nuffield Orthopaedic Centre, Oxford; and professor of musculoskeletal pathology at University College London (UCL). She is also lead scientist of the cell and genetics of sarcoma team at UCL Cancer Institute. Clinically she is interested in cell and molecular pathology of bone and soft tissue tumours and nonneoplastic musculoskeletal disorders, whilst her research interests include cell biology and genetics of sarcoma, discovering new diagnostic signatures for sarcoma and identifying markers to predict clinical outcome for sarcoma. Professor Flanagan is considered a leading expert in chordoma research.
Dr James Spicer
“I am delighted to join Sarcoma UK’s Research Advisory Committee. Focussed charities, such as Sarcoma UK, play an ever increasing role in ensuring that research for patient benefit is undertaken in rare diseases”
Dr Spicer is senior lecturer in the Cancer Studies Division “I am delighted to of King’s be joining the RAC. College Sarcoma patients are in London, and need of new approaches honorary consultant in medical oncology at Guy’s and St Thomas’. He has a PhD to treatment, and in cancer biology from the Institute of it is through the Cancer Research in London, and a degree in biochemistry from the University of coordinated efforts Oxford. He is a member of the NCRI Clinical of Sarcoma UK that Studies Group for advanced lung cancer, we can make fastest the steering committee of the British Thoracic Oncology Group, and the London progress” Lung Cancer Group. His specialist and research areas are early phase trials and novel therapies for lung cancer and thoracic malignancies. He has established a phase 1 programme in solid tumour oncology at Guy’s Hospital, and is lead for thoracic medical oncology at King’s Health Partners. His pre-clinical research interests include discovery of novel immunotherapies and pharmacogenetics. Connect
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Awareness
Sarcoma Voices
The bone & soft tissue cancer charity
Sarcoma Voices are people who have been affected by sarcoma cancer, either as a patient, carer or family member, who want to share their story and experiences to help shape and improve sarcoma services and care, and to raise awareness. Hear from one of our Sarcoma Voices, Suzel.
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he guys and gals at Birmingham will take that out for you. It’s a sarcoma tumour, rare, but treatable”. Wow! Those words went round and round in my head for a few days afterwards but I knew I had to remain positive. I’d had an MRI scan, then two weeks later I could see the tumour on an x-ray – it was the size of a potato. However, I didn’t know if it was benign or malignant. After a biopsy at the Royal Orthopaedic Hospital in Birmingham, I received a call confirming it was a low grade malignant tumour that was in the soft tissue in my shoulder and that it had to be removed in an operation scheduled for a month later. Thankfully, my operation was successful. I was lucky. During my time in hospital I met some inspirational people, some of whom I’m still in touch with.
I began my radiotherapy treatment about a month later at The Christie Hospital in Manchester – 30 ‘zappings’! The team were brilliant and very reassuring. Whilst waiting for my treatment one day, I got talking to a lovely lady named Sheelagh who told me that her husband Roger was having radiotherapy for a very rare cancer, less than 1% of all cancers diagnosed. At this point I interrupted and said “a sarcoma?” - and proceeded to tell her my story. It was incredible really to meet someone who knew about sarcomas. Roger is honorary president of Sarcoma UK, this is why I am writing this story as both Roger and Sheelagh have been an inspiration. I believe you have to stay as positive as possible. It’s not what you have but how you deal with it. I have since given my GP some information on sarcomas and am continuing with physiotherapy at my local infirmary. I’m also especially pleased to say that so far all is good.
I will be celebrating a significant birthday next February. I do my best to enjoy every day, as much as possible. I have been blessed with an amazing husband and my heart fills with love and pride every time I look at him and my son. My family are also incredible and have always been supportive and there for me. I have recently joined a gym with a pool and am trying hard to stay in shape as it really does enhance my wellbeing, physically and mentally. As you read this, it will be 2 years ago that I found the tumour was malignant, and I cannot express, in words, how grateful I am to the brilliant surgeons and healthcare professionals who treated me. So, I would like to end by saying “try and keep as positive as possible, it really does help!” Share your story, become a Sarcoma Voice – “Speak out!” sarcoma.org.uk/voices
‘Changing the landscape for sarcoma’ The bone & soft tissue cancer charity
The Big Conversation
Sarcoma UK’s one-day event aims to bring together anybody affected by sarcoma – bone, soft tissue and GIST - to get actively involved in changing the landscape for sarcoma.
Learn how sarcoma is managed and treated in the UK and the
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key challenges for the future. Understand how sarcoma services are set up in the NHS and hear about the current experiences of sarcoma patients. Discover how you can contribute to improving local and national sarcoma services. Explore how to be an effective voice for people affected by sarcoma using your own personal experiences. Discuss how to support other people affected by sarcoma using your own personal experiences, through support groups or giving individual support. Meet other Sarcoma Voices and share your story and ideas.
Connect
• Sarcoma UK • Winter 13
Who should attend?
• People affected by sarcoma. Those who already act as a
‘Sarcoma Voice’ locally and nationally, and those who want to become a ‘Sarcoma Voice’ • Support group leaders and active members of support groups • Anyone involved in providing support for people affected by sarcoma
Register your interest now! Saturday 22 March 2014 • 10am – 5pm The Studio, 7 Cannon Street, Birmingham B2 5EP This event is free (places are limited). Email: voices@sarcoma.org.uk or call 020 7250 8271
www.sarcoma.org.uk
Awareness
Medical Student Awareness Campaign During Sarcoma Awareness Week 2013, an innovative new national learning initiative to raise awareness of sarcoma amongst medical students and trainee doctors was launched, developed by the sarcoma team at the Royal Liverpool and Broadgreen University Hospitals NHS Trust.
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tudents and trainee doctors from medical schools around the country were invited to take part and the top scoring students received a short term funded clinical fellowship at a sarcoma specialist centre. We talked to one of the successful participants, Philip Broadbent, about his motivation for taking part, what he learnt and his thoughts about sarcoma education. Philip is a trainee doctor (Foundation Year 1) working at the Glasgow Victoria Infirmary as well as a lifelong Bolton Wanderers fan!
Philip Broadbent and fiancée, Rachel
What inspired you to want to learn more about sarcoma? During our final examinations, What did you learn? our year group was universally The single biggest thing I learnt was flummoxed by a question on the importance of prompt diagnosis osteosarcoma. At first I felt indignant in the management of sarcoma and that all of my months of revising how big an impact this can have on heart failure and diabetes were futile, prognosis. I also learnt about the but the more I thought about it, classification of sarcoma and it “Lack of the more I realised that we certainly alleviated some of the should be just as well versed mystery surrounding sarcoma. understanding or on sarcoma as we were I gained valuable insights awareness of sarcoma, on scabies, or sclerosing into how patients regard cholangitis or second both among patients and their disease and how degree heart block for people come to terms with practitioners is one of example. their diagnosis. Sadly, I also saw at first-hand how the biggest hurdles to What did you do as part patients have to cope with early diagnosis and of your fellowship? delayed diagnosis and the I spent a week working with anger and upset this can cause. treatment” different professionals involved in sarcoma management at the What are the key things you will Beatson Cancer Centre in Glasgow. take away from the experience? I attended new and return clinics at As a doctor, always be vigilant, centres across the city, scrubbed in particularly when faced with patients for theatre with the surgeons, and with unusual lumps or bumps. It attended Multi-Disciplinary Team could be sarcoma and we should meetings where the management of include this in a list of things to complex cases was discussed. rule out. www.sarcoma.org.uk
I will also take away the incredible optimism that I found among the patients I met. The sarcoma team of professionals was also inspirational. The team was so cohesive and each member of the team - medical, surgical and nursing staff - had a vital role to play. They were all determined to treat patients to the best possible standard but also to increase awareness of sarcoma. This was a fantastic experience that will stay with me throughout my career as a doctor. Medical students and trainee doctors are a key group in terms of improving understanding and knowledge of sarcoma. Since taking part in this Fellowship, I regularly collar medical students on placement at my hospital and force them to watch a slideshow I put together about sarcoma! I’d advise any medical student to jump at an opportunity like this. Connect
• Sarcoma UK • Winter 13
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Awareness
National Cancer Patient Experience Survey 2013
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he National Cancer Patient Experience Survey (NCPES) is undertaken by the Department of Health and is designed to provide an insight into the care experienced by cancer patients across England who are treated as day cases or inpatients. The first survey was carried out in 2010 and since then, it has been repeated in 2012 and 2013 in order to monitor national progress on cancer care. The experiences of sarcoma patients have been amongst the worst of all the cancers. This year’s survey noted that “the results for sarcoma in particular have improved substantially in relative terms over 2012”. Here is a summary of sarcoma patients’ experiences in key areas.
Seeing a GP
64% of sarcoma patients saw their GP no
more than twice before referral to hospital in 2013 compared to 62% in 2012. The number of sarcoma patients who felt they were seen as soon as necessary decreased from 73% in 2012 to 72% in 2013.
Written information
58% of sarcoma patients in 2013 were given
written information about sarcoma compared to 50% of patients in 2012.
78% of sarcoma patients in 2013
were given written information about what they should or should not do after leaving hospital, compared to 77% in 2012.
Clinical nurse specialists
86% of sarcoma patients had been given the name of a Clinical Nurse Specialist in 2013 compared to 79% in 2012.
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• Sarcoma UK • Winter 13
Taking part in research
34% of sarcoma patients in 2013 said that taking part in research had been discussed with them compared to 33% in 2012.
72% of sarcoma patients who said they
were asked then went on to take part in cancer research.
Support
78% of sarcoma patients in 2013 who
said it were necessary reported having been given information about support or self-help groups for people with cancer by hospital staff compared to 76% in 2012.
Sarcoma UK comment: Sarcoma UK welcomes the positive improvements shown for sarcoma patients in the National Cancer Patient Experience Survey 2013 in some key The bone & soft tissue cancer charity areas. This reflects the increasing recognition within the NHS about the importance of improving care and treatment for sarcoma patients and the commitment of sarcoma specialist centres in improving their services. Of equal importance is the role that patient organisations have played in raising the profile of sarcoma with health professionals and policy makers. However, the survey shows that much still needs to be done to improve the experiences of sarcoma patients so that they are consistently amongst the best of cancer patients. In particular, the role of the GP in prompt referral, and the provision of written information throughout the treatment pathway for sarcoma patients need to improve significantly in order to improve overall experiences. For more detail, analysis and comment from Sarcoma UK, read the full briefing at: sarcoma.org.uk/PSE
www.sarcoma.org.uk
Support & information Research
Sheffield Support Group What happens at a sarcoma support group? Barry Davis and John Beeden, from the Sheffield Sarcoma Support Group share with us the way their group works and how it “isn’t always about sarcoma!”
T
he Sheffield Sarcoma Support Group (SSSG) was formed in 2009 by a small group of sarcoma patients with the support of the sarcoma clinical nurse specialists and clinicians and it remains a patient-led group. Its members and their relatives/carers are drawn from a wide geographical area around the Weston Park Hospital, including Barnsley, Doncaster, Rotherham, Sheffield, Worksop, and Chesterfield. Although the group is run by the Chairman with the support of its members, all members have the opportunity to input their ideas on the group’s activities.
are informed of the existence of the group at diagnosis by the clinical nurse specialists, who then leave it up to individuals to decide whether they wish to join the group.
Sheffield Support Group
The aim of the group is to allow patients and their relatives/ carers to meet regularly, on a social basis and to have discussions on almost any topic of interest. Discussions around sarcoma may be short and do not necessarily dominate the meetings. The SSSG meets on the second Friday of January, March, May, July, September and November. Most meetings are held in the large Committee Room “Discussions or lecture theatre at Weston Park Hospital beginning at around sarcoma 6.30pm and last for about may be short and two hours. The evening usually begins with a talk do not necessarily by a guest speaker. Topics dominate the have been wide-ranging, including medicine in extreme meetings” locations, British steam railways, the history of Sheffield, guide dog training and current research into butterflies and moths. We also have an occasional clinical meeting where a member of the sarcoma medical staff reports on advances in sarcoma We have 12 research and treatments. In addition support groups set up over the we have had two or three visits by country, find members of the team at Sarcoma UK one near you: to tell us about their work. Each talk sarcoma.org.uk/ lasts for about 50 minutes and then support-groups time is allowed to ask the speaker www.sarcoma.org.uk
questions. This is then followed by refreshments and general chat amongst the members. In summer the refreshments often include a strawberry cream tea. The November meeting usually takes place in a local church hall where we indulge in a fish and chip supper and a Christmas quiz. After each talk/activity, the Chairman and other members of the group give an update on any information that may be of relevance, for example meetings and conferences attended, and reports on latest treatments and developments. As well as our regular meetings the group also runs some sort of event, such as a raffle during Sarcoma Awareness Week to raise some funds for Sarcoma UK. Last year sky diving by one of the clinical nurse specialists and the daughter of one of our patient’s raised a substantial amount for Sarcoma UK. The group currently has around 40 members, including relatives and carers, clinical nurse specialists, as well as the patients, and we regularly get between 15 and 25 people at each meeting. The summer meetings (July and September) usually attract fewer members owing to holidays, but overall the number of people who attend is generally governed by how well people are at the time of the meetings and personal circumstances. New members join the group on a regular basis. New sarcoma patients
The Chairman also writes a short report about each meeting that is put into a sarcoma file that contains all sorts of other information on various sarcomas. The file is then left on a desk in the Outpatients Department at Weston Park Hospital for people to browse through while they are waiting to see their consultant. Alongside this other information is also provided by Sarcoma UK and GIST Support UK. In addition to this we have a pull-up plastic information banner on display at the sarcoma clinics also giving information about the group. The SSSG works well and serves a very important purpose in that sarcoma patients and relatives can meet and know that they are not alone, and that there is a mutual support group in the area. One of the major difficulties in running such a group is to find funds for suitable speakers. So far we have been fortunate, in that friends and relatives of patients as well as some of the patients themselves have done most of our talks. We are aware that the group needs to develop further, and we are looking at the possibility of doing one or two short walks in the Peak District and possibly a theatre visit to widen our activities. We are also looking at the development of a new web site to allow for easier dissemination of information. These ideas will form the basis for future discussion by the group. Connect
• Sarcoma UK • Winter 13
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Support & information
Sarcoma UK launches R new GIST booklet We are excited to give you a sneak peek of our new GIST booklet, available in January 2014.
G
IST is a type of sarcoma, rare cancers that develop in the connective tissues: muscle, bone, nerves, cartilage, tendons, blood vessels and the fatty and fibrous tissues. GIST is the most common type of sarcoma; it develops in the gastrointestinal (GI) tract, a long tube running along the body from the oesophagus (gullet) to the anus (back passage) and includes the stomach and intestines. Most GIST tumours are found in the stomach and small bowel but can occur anywhere along the GI tract.
Sublingual gland
Parotid gland Submandibular gland
Oesophagus
Liver
Diaphragm
Gall bladder
Stomach
Duodenum
Pancreas
Ascending colon
Small bowel
Caecum
Descending colon
Appendix
Rectum Anus
Most GISTs occur because a change in the cells (mutation) tells the GIST cells to grow and multiply. There are also a number of rarer types of GIST: GIST • Wild-type A type of GIST not caused by a cell mutation.
GIST • Paediatric A GIST affecting children and young adults. Paediatric GIST is very rare.
GIST • Syndromic A type of GIST linked to Carney’s Triad Syndrome and CarneyStratakis Syndrome.
GIST • Familial A rare inherited form of GIST.
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You can pre-order your copy by email info@sarcoma.org.uk or phone 020 7250 8271 Connect
• Sarcoma UK • Winter 13
habdomyosarcomas (RMS) are sarcomas of the skeletal muscles and can occur at any anatomical cancer site. They are one of the rarer forms of soft tissue sarcoma, and collectively account for approximately 4% of diagnoses. However, rhabdomyosarcomas account for 50% of soft tissue sarcomas diagnosed in children less than 10 years of age. Rhabdomyosarcoma age standardised incidence rates were 1.94 per million in 2007-2009. Age standardised rates are higher in males (2.2 per million in 20072009) than females (1.7 per million in 2007-2009). These sex specific differences are not statistically significant (Figure 1). Historically, most rhabdomyosarcomas were recorded as rhabdomyosarcoma NOS (not otherwise specified), although the three most common specific variants of rhabdomyosarcoma are embryonal (most commonly associated with children but also diagnosed in adults), alveolar (most commonly associated with adolescents and young adults) and pleomorphic (most commonly diagnosed in adults over the age of sixty years). There were 2,438 new diagnoses of rhabdomyosarcoma in England between 1985 and 2009. Of these, 45% were rhabdomyosarcoma not otherwise specified (NOS), 29% were embryonal, 16% were alveolar and 10% were pleomorphic. Age specific rates are highest in young children and the elderly (Figure 2). Approximately 38% of rhabdomyosarcomas are diagnosed in children less than 10-years of age, and a further 18% are diagnosed in patients between the age of 10 and 19 years (Figure 3). Rhabdomyosarcomas can arise within any anatomical site, but most commonly occur in the head, face and neck (26%), the connective and soft tissue of the trunk (18%) and the www.sarcoma.org.uk
Statistics
Key facts • Most common anatomical sites of
Rhabdomyosarcomas
diagnosis: head, face and neck, soft and connective tissue of the trunk and limbs • 2,438 rhabdomyosarcomas diagnosed in England 1985-2009 • Age standardised incidence rate: 2 per million in 2007-2009 • Number diagnosed in 2008 and 2009: 91 and 100 • Sub-types: – Rhabdomyosarcoma NOS: 1,081 diagnosed 1985-2009 • Embryonal rhabdomyosarcoma: 710 diagnosed 1985-2009 • Alveolar rhabdomyosarcoma: 385 diagnosed 1985-2009 • Pleomorphic rhabdomyosarcoma: 249 diagnosed 1985-2009 • Mixed type, spindle cell and RMS with ganglionic differentiation: 13 diagnosed 1985-2009
The West Midlands Knowledge & Intelligence Team (Public Health England) continues its articles for Connect, with a specific focus on soft tissue sarcomas – rhabdomyosarcomas record of metastases at diagnosis.
connective and soft tissue of the limbs (17%). The proportion of rhabdomyosarcomas diagnosed at each anatomical site varies with histological sub-type (Figure 4)
Although five-year relative survival rates are relatively high for rhabdomyosarcoma patients less than ten-years of age, much improvement is still required in order to improve outcomes for patients in the older age groups.
Five-year relative survival rates are 78% for patients less than ten-years of age with no Figure 1: Age standardised rhabdomyosarcoma incidence rates – males and females (England: 1985-2009)
Figure 2: Rhabdomyosarcoma age specific incidence rates in males and females (England: 1985-2009)
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Males
Females
Males Age specific incidence rate (per million population)
4 3 2 1
8 6 4 2
07-09
05-07
03-05
01-03
99-01
97-99
95-97
93-95
91-93
89-91
87-89
0 85-87
0
Year of diagnosis (3-year rolling)
Figure 3: Counts of rhabdomyosarcoma diagnoses in males and females (England: 1985-2009)
350
Males Females
300
Number of daignoses
Females
0 5–9 10–14 15–19 20–24 25–29 30–34 35–39 40–44 45–49 50–54 55–59 60–64 65–69 70–74 75–79 80–84 85+
Age standardised incidence (per million population)
5
250
56% of diagnoses
200
Age at diagnosis Figure 4: Rhabdomyosarcoma sarcoma variants diagnosed in the most common anatomical sites (England: 1985-2009)
Embryonal RMS Alveolar RMS
36
273
82
Pleomorphic RMS
150
Rhabdomyosarcoma NOS
100
19 13
229
92
82
121
100
187
111
204
50
98
47
98
16 21
46
51
13 11
36
69 85
188
0 20 40 60 80 100
50
Diagnosed (%) 0-4 5-9 10-14 15-19 20-24 25-29 30-34 35-39 40-44 45-49 50-54 55-59 60-64 65-69 70-74 75-79 80-84 85+
0
Age at diagnosis
www.sarcoma.org.uk
Other sites Gynaecological organs Connective tissue of trunk Head, face and neck
Connect
Male genetalia Organs within trunk Retroperitoneum Limbs
• Sarcoma UK • Winter 13
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Online
support.sarcoma.org.uk/ donate
By bank
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Patron Richard Whitehead MBE Honorary President Roger Wilson CBE Scientific/Medical Advisor Professor Ian Judson Chief Executive Lindsey Bennister Chair of Trustees Peter Jay Board of Trustees Lesley Abraham Dr Jane Barrett Karen Delin Leigh Hibberdine Nicky Mellows Glyn Wilmshurst
Disclaimer: Please note that personal views and opinions expressed are not necessarily endorsed by Sarcoma UK. The material in this publication is provided for personal, non-commercial, educational and informational purposes only and does not constitute a recommendation or endorsement with respect to any company, medical professional or product. Sarcoma UK makes no representations and specifically disclaims all warranties, expressed, implied or statutory, regarding the accuracy, timeliness, completeness, merchantability or fitness for any particular purpose of any material contained in this or attached document/s. The information contained in Connect is not intended to replace advice or medical care from your doctor. No part of this publication may be reproduced in any way without prior permission from Sarcoma UK.