Connect info@sarcoma.org.uk www.sarcoma.org.uk
The bone & soft tissue cancer charity
Summer 20 1 2
Did you see our
Olympic Torchbearers? Four inspirational supporters tell us about their once-in-a-lifetime opportunity – carrying the torch at London 2012 and representing anybody touched by sarcoma. See page 4
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A carer’s perspective
Sarcoma affects everybody, not just the patient
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Research update
Dr Janet Shipley gives a personal view on her research project into sarcoma
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Leiomyosarcoma Statistical insight from The West Midlands Cancer Intelligence Unit
From the Chief Executive
Sarcoma UK’s key messages UK is the main charity in the UK dealing with • Sarcoma all types of sarcoma UK provides information and support for • Sarcoma anyone affected by sarcoma – patients, carers, relatives 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 on voluntary donations and fundraising activities to fund its work Sarcoma UK is staffed by a small 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 doctors, nurses, researchers and other cancer charities
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Impact Research Sarcoma UK has funded over £355,000 of scientific and medical research since 2009. Grants have been awarded to leading scientists, researchers and clinicians in centres of excellence around the UK Support Sarcoma UK runs three email support groups – for patients, carers and patients with gynaecological sarcomas. Subscribers chat to each other by email and gain valuable support from other patients in the same situation. In a recent survey of subscribers, respondents overwhelmingly found the postings on the site informative Sarcoma UK provides support to 10 local sarcoma groups around the UK, and helps new groups to get set up Sarcoma UK has active Facebook and Twitter pages where sarcoma patients, family members and carers are able to communicate with each other in a social online environment – join us today! Information Sarcoma UK’s patient information is rated highly amongst patients and healthcare professionals. Almost 50,000 leaflets about sarcoma are sent out to individuals and hospitals each year Awareness Connect (Sarcoma UK’s publication) is sent out three times a year and distributed to a database of 5000 Campaigning Sarcoma UK is an active member of Cancer 52 (the alliance of charities representing less common cancers) and the Cancer Campaigning Group (the alliance of cancer charities representing ‘third sector’ interests in the delivery of cancer services)
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Connect
• Sarcoma UK • Summer 1 2
W
elcome to our Olympic edition of Connect! London 2012 has significantly raised the profile of sarcoma. Four inspirational supporters with personal experience of sarcoma had the honour of carrying the Olympic Torch. Pippa, Jordan, Jo and Paul’s mission: to increase the public’s knowledge and understanding of sarcoma. Read about their once-in-a-lifetime achievement on page 4. Vicki Aggar, a sarcoma survivor, former athletics and rowing world champion and now athlete services manager of the GB British Paralympics squad, shares her amazing story on page 10. Vicki knows at first hand that in order to achieve excellence, you must have a clear vision and a plan setting out what you will do to achieve your goals. This is exactly our culture at Sarcoma UK. We will develop a strong vision for the future, and a clear pathway to maximise our impact and make a bigger difference to the lives of people affected by sarcoma. I ask you to take five minutes to fill out the enclosed survey or online at www.sarcoma.org.uk. As well as having clear goals, athletes constantly monitor and check their individual performance so that they know whether they are on track for achieving the gold medal. Sarcoma UK is no different. It is vital that we report on what we have achieved and exactly how your money has been spent. Our Annual Review for 2010-2011 is published this September – download it from our website. Summer has been a time to look back on what our charity has already achieved, as well as looking forward, in order to grow and improve the lives of even more of you touched by sarcoma. Best wishes
Lindsey Bennister Chief Executive
What is sarcoma? Sarcomas are rare cancers that develop in the supporting or connective tissues of the body such as muscle, bone, nerves, cartilage, blood vessels and fat. are around 3200 new cases of • There sarcoma diagnosed each year in the UK account for about 11% of • Sarcomas childhood cancers and about 14% of cancers in teenagers sarcomas (about 55%) affect • Most the limbs, most frequently the leg. About 15% affect the head and neck area or are found externally on the trunk, while the remainder will be found internally in the retroperitoneum (abdominal area) Types of sarcoma Sarcomas fall into three broad categories:
There are around 70 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 • Fibromyxosarcoma • Liposarcoma stromal • Gastrointestinal tumour (GIST) sarcoma (KS) • Kaposi’s • Angiosarcoma peripheral nerve • Malignant sheath tumour (MPNST) • Synovial • Myxofibrosarcoma • Rhabdomyosarcoma • Desmoid tumour
• Soft tissue cancers Bone • Primary bone cancers • Osteosarcoma Gastro-intestinal stromal tumours • (a type of soft tissue sarcoma found • Chondrosarcoma sarcoma • Ewing’s Chordoma in the stomach and intestines • Giant cell tumour (GCT) commonly known as GIST) •
www.sarcoma.org.uk
Awareness
Sarcoma Awareness Week 2012 Thank you to all of you who supported ‘The Many Faces of Sarcoma’ online community
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ver 300 of you got involved: patients, carers, friends, family and healthcare professionals uploaded your photo on to our website www.sarcoma. org.uk – we are overwhelmed at the response and impact of messages in supporting one another. You helped us raise awareness of sarcoma and put a face to anybody touched by this rare cancer. Please take a moment to browse the photos – there’s still time to upload yours!
Lauren Armstrong takes the leap!
Emily 28, cardiac angiosarcoma... fuas! x
We are also delighted that 14 supporters rose to our skydive challenge – raising £6,500 – what a fantastic effort, thank you! Lauren Armstrong took the leap to support her mum. She said: “It was a terrifying Isaac &Harriet 2, experience but one totally Supporting Granny with LMS worthwhile to raise money for a cause close to my family’s heart. Shout out to my mum and the Sheffield Sarcoma Support Group as we wanted to raise awareness for Sarcoma UK.” Many of you got together with friends and family to organise a fundraising event during Awareness Week. Take a look at our community fundraisers’ stories on page 7 – be inspired!
Sarcoma Awareness Week 2013: 17-23 June
Scott 38, fighting pleomomorphic liposarcoma..yeh!
Conquer Kilimanjaro! Step up to our Sarcoma Awareness Week challenge and raise much needed funds for our charity. Put the enclosed poster up on your school, work or club notice board. Located on the north-eastern tip of Tanzania, Mount Kilimanjaro is one of the world’s highest peaks and the setting for a truly amazing charity trek! Kilimanjaro (Tanzania) 20th - 29th June 2013 Deposit: £449 Sponsorship level: £4,150 Book online today: http://sarcoma.org.uk/fundraisingevents or email info@sarcoma.org.uk for more information. www.sarcoma.org.uk
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London 2012
Carrying the torch They may have finished carrying the Olympic torch, but our sarcoma torchbearers are still keeping the flame burning and raising money for sarcoma cancer research. Not only did they represent their nation, they represented everybody in the sarcoma community and we are very proud of them all Jordan Anderton, 18 • 20 May When I was nominated to carry the Olympic torch by my mum’s friend and co-worker Louise Parker, I never thought I’d be chosen. Living in Plymouth, the event on May 20th would be Day 2 of the relay and Olympic fever would be at its height. When I received the call to say I’d been selected, it’s not surprising I didn’t believe it. I had to ask them to repeat it twice! After being diagnosed and treated for a myxoid liposarcoma on my left knee when I was just 14, I began raising money for Cancer Research UK, Teenage Cancer Trust and Sarcoma UK. One event, Relay For Life, raised £86,000. Even so, carrying the Olympic torch was the best day of my life. I had the best bit because my torch got lit by the lantern, so I held the torch longer than the others. I started off walking, then I started running because I saw my friends and they were cheering for me. The route was a little bit downhill so I started running faster than I thought and it went by quite quickly! Everyone who takes part in the relay is given a replica torch as a memento of the day. I took the opportunity to tour my torch around local primary schools and so far, have raised £250. One girl was really excited to see the torch, she was jumping up and down. It makes you remember how cool and special it is. Now when these kids see the torch on television they can say they’ve held it!
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I work in a bar and I served a Connect
• Sarcoma UK • Summer 1 2
girl the other day, who said she recognised me from the television, and that I was the one who carried the torch! Then she said it was nice to meet me. That was really surreal. It made me realise that she must have really looked at me!
Paul Barden, 51 • 7 July My wife, Helen Patterson, was diagnosed with metastatic deep softtissue angiosarcoma in March 2011. Helen was a consultant oncologist with a PhD in sarcoma molecular genetics: no one could know more about their disease. Helen was treated with radiotherapy and chemotherapy and did well at first, I nominated her to carry the Olympic torch, in recognition of her charity fundraising as well as the outstanding care she gave to her patients, and we were both delighted when the nomination was accepted – Helen was booked to carry the torch in Newport, Essex, on July 7th. Helen was still quite well in February, and we had a successful family skiing holiday, but by March the cancer was no longer controllable. Helen died on 18th April.
From left to right: Jordan Anderton, Paul Barden...
crowds, torch held high. The route was packed with cheering spectators braving the rain. My run had been increased to 600m at short notice, and I wasn’t sure where my family would be, but near half way there they were. I veered to the side of the road to hug our children, scaring the security guards who kept their cool. Back on course the torch was getting heavy. I kissed my wedding ring, held the torch high, and ran on. It seemed to take forever, but still not long enough, to reach the next runner. We lit his torch from mine, and the officials hustled me onto the waiting bus. Back at base, the sun came out again. I walked half a mile to where I’d parked my car: it took nearly an hour as I stopped for passers-by who wanted to be photographed with the torch. The event had caught the public imagination, and it was a special way to remember Helen.
I was thrilled to be told that I would be able to carry the torch in Helen’s memory. There was a bus to take the torchbearers to our starting points; we were not far away when the heavens opened and the sunshine changed to driving rain.
Jo Bryant, 29 • 17 July
The rain made the experience all the more memorable. The torch lit up easily enough even in the wet; I struggled out of the official plastic poncho, and set off waving to the
My graduation coincided with London winning the Olympic bid and that was when I decided to try my hand at a career in sports events. So, off I went, down to London
After leaving university in 2005 I was a little lost as to what to do next. The only thing I knew I loved was sport.
www.sarcoma.org.uk
London 2012
and set about making my dream of working at the Olympics a reality. Six years of working in the sports industry and with only one year to go to the Games, excitement was building. But, for me, it was not meant to be. In February 2011, aged 28, I was diagnosed with a cardiac sarcoma in my left atrium. Since then, I have undergone open heart surgery twice and battled with two rounds of chemotherapy. Although I had a brief period of remission, the disease returned and spread to my lungs. With my dreams of working at the greatest sporting event on the planet in tatters, you can imagine my joy when I was asked to carry the torch through Crawley on Tuesday 17 July, day 60 of its journey around the country.
Pippa Hatch, 17 • 20 July Cancer... a word I tried not to give much thought to. It was something that happened to older people, never anyone my age, but how wrong was! Following around 18 months of repeated visits to our local doctor’s surgery, I was eventually diagnosed with a rare form of sarcoma known as Paediatric Wild-type GIST (Gastro Intestinal Stromal Tumour). Following my nomination by Sarcoma UK, I received the amazing news that I’d been selected as one of the 8,000 torchbearers to take part in the London 2012 Olympic Torch Relay, which was not only a huge honour, but extremely exciting!
Crowds lined the route, with children waving their own homemade torches. There were chants of “Go JB” from friends that had come to watch. I ran the whole 0.3 miles, quite an achievement these days from this ex marathon runner. A once in a lifetime experience, which is difficult to put into words.
I didn’t expect to be nervous, but when it dawned on me that I was going to be the only person in the world carrying the Olympic Flame later that afternoon, I suddenly realised that everyone would be watching. We arrived in Ascot to first meet the other torchbearers, as well as the jockey Frankie Dettori and athlete Denise Lewis who were the celebrities accompanying us that afternoon (it was also here that I got to learn that I’d been chosen to take the flame from Frankie!).
Thank you so much to Lloyds TSB for making it possible.
It was the most incredible feeling and I will never forget the atmosphere:
www.sarcoma.org.uk
...Jo Bryant and Pippa Hatch
over 20,000 people were there cheering me on as I ran with the flame, including over 60 friends and family who had come to support me. It was lovely to be able to share part of my experience with them all. The following day I was invited to a local primary school to show the children the torch. Each year group had nominated one of their classmates to take part in their very own Torch Relay. As part of the lead up to my ‘Moment to Shine’ I was also offered an incredible opportunity to take part in a professional photoshoot and interview for Olympic Review Magazine, the official quarterly publication produced by the International Olympic Committee. The photoshoot took place in London and was a brilliant day. The same photo is used on the front cover of this edition of Connect! I wish I could do it all over again. I am very grateful to Sarcoma UK for nominating me and would like to say how much I appreciate all they have done to support me and my family. I would also like to say a massive thank you to “TEAM GIST” for all they do to help me raise awareness and funds for Sarcoma UK, and for supporting me throughout my cancer journey. Connect
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Personal experience
A carer’s perspective What have Wendy Watkins and six million people in the UK got in common? They care for people, through sickness and in health
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ife for us changed late in the night of March 2011, when my husband Derek was taken to hospital with what I now know to be ‘the rigors’. He was freezing cold, couldn’t stop shaking and by the time I joined him in A&E he was crying with pain. It turned out that a tumour the size of a melon had burst through the wall of his bowel and he needed immediate surgery. We’d had no warning. I went into robotic mode. I was on top of everything, absolutely on top of everything. One of the few times I cried was when he was in theatre because I knew he might not come out, or if he did he might have a colostomy bag. Derek was also worried because the operation would cut through his stomach muscles and might mean the end of his career – he’s a musician, an internationally renowned trumpet player. It was horrible.
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to be 70 before I die’. And I say, ‘But you’re not going to die’. My mother had cancer 30-odd years ago and was told she had six months – she’s living in a nursing home up the road! It was her attitude. I keep saying to Derek, ‘You’ve got to be determined’. He is, but he has his black moments.
doctors are worried. We have a scan booked but they’ve said that if there’s any pain or anything like that, they’ll perform an emergency operation.
We haven’t cried in front of him ever, haven’t done anything that would make him feel different. The music business is like any business, there are rumour-mongers, so we’ve been very honest about things that have been going on, except the very personal things. He might Originally Derek was diagnosed with a not get work because people know myofibroblastic sarcoma, later revised he’s got cancer, it has happened a bit. But he’s fine, he’s at work. He to synovial sarcoma. What’s in a went back to work six weeks to the name anyway? It’s just as frightening day after his major operation. He when attached to the word cancer. started practising at four weeks, was He’s receiving treatment at the Royal Marsden and we are confident that he back doing film work, then a show. I had people watching his back with is getting the best care. emergency numbers all the time. The Professor just laughs For three months post when Derek tells him operation he was “If you what he’s been doing. symptom free, but encounter then the sarcomas something that you Right this minute came back. He had six months can’t control, there’s it feels like we are sitting on a of chemotherapy, nothing you can do. time bomb. Derek but two lots is worried about of secondaries You’ve got to roll providing for me after appeared, the with it.” he dies, making sure first of which have I’ve got enough money. responded very well to He’s really head down and trying the chemo. Sadly the second to work. At the same time I can’t lot appear to be chemo resistant. envisage him not being here. He’ll say There’s a very large tumour that’s to me, ‘I’m too young to die. I need pressing on his bowel and the Connect
• Sarcoma UK • Summer 1 2
Cheryl and Derek Watkins at the Brighton Marathon; and inset: Wendy Watkins
Stress-wise, the impact on the family has been enormous. Derek was always head of the family, he’d take care of things, even when the kids were married. Him getting ill has taken the wind from our sails. Horrendous. I’m still a mother and I’m sure my kids are in pain. I know they’re stressed because I’m stressed, obviously, but sometimes I just can’t give them sympathy. I haven’t got it, I’m running on low. Sometimes I feel I’m being unkind. I almost have to turn around, and I don’t, I try to do it in a tactful way, to say ‘Leave me alone. I can’t take your problems on. I know he’s your dad, or your grandad, or your best mate, but I can’t take on your problems because I’m just about coping with mine’. I think there is a need for something along the lines of a sarcoma nurse to be there for carers. The sarcoma nurse made it clear that she was there for Derek, for me as a sideline. They would talk and listen and have the knowledge of what is going on for the patient. So when Derek starts saying, ‘I’m not going to live for long’, I can ask the nurse if there is anything specific that I should know? How do I cope with that kind of talk because I find it terribly negative? Am I being hard on him? I don’t want to be hard on Derek by saying, ‘Don’t be so downbeat, you haven’t only got a year left’. I need to support him. A specific place or person to go to for carers would be really helpful. I know there’s Carers UK but I’m talking www.sarcoma.org.uk
Fundraising
specifically about cancer. Having cared for my mother who has vascular dementia, it’s different. When you care for somebody who has a potentially life-threatening disease it’s different to coping with someone with an age-related condition. Last year I was on a diet with Slimming World and I was doing really well. I’m an asthmatic so I have to be careful about my weight. But I gave up Slimming World when Derek became ill and I’ve only just restarted it. It’s indicative of the things you do for yourself as a carer that you let go or ignore. Personal care for at least a year went by the wayside. A diet – I really couldn’t take it on. Going to the cinema with friends, I kind of withdrew. The world got smaller. But I think that kind of goes with the territory because there’s only so much you can hold in your head. If I stop and analyse it, it’s very complicated. If I stop to think for a moment about what he’s going through and what might happen... I mean, I cry at the daftest things on the telly, which I never used to do. I haven’t read a book for goodness knows how long because I can’t concentrate. I’ve got self help books up to the ceiling and they just weren’t read. Concentration goes. That’s why it’s nice to go on holiday. We’d booked to go to Venice two weeks after he was taken ill last year. Obviously that had to be cancelled. He keeps saying, ‘We’ll get there’ and I believe we will. My daughter in law, Cheryl, ran the Brighton marathon this year for Sarcoma UK and raised nearly £6,500. Through going into the studios Derek has blagged a lot of money from the musicians. And the guy who runs Derek’s website designed a t-shirt for Derek and for every t-shirt they sell, £2 is going to Sarcoma UK. Last week he put in £56... we’re all chuffed to bits about it! It’s my maxim that if you encounter something that you can’t control, there’s nothing you can do. You’ve got to roll with it. No point in getting bitter and twisted. www.sarcoma.org.uk
Personal challenges Sarcoma Awareness Week was celebrated by the nation, with many of you taking up a personal challenge or putting on events to raise funds and raise awareness of sarcoma cancer. Hear first-hand from our supporters and what motivated them Fun run, no sun! When the idea came that the London Sarcoma Service would run 5km on 24 June to support Sarcoma Awareness Week there was concern that the heat might wilt their running efforts. No need to have worried as some members of the team donned beanie hats and long sleeved running tops to try and keep warm! That said, spirits certainly weren’t as damp as the weather and all embraced the challenge. Representatives from across the disciplines including Oncologists, Occupational Therapists, Physios, Surgeons and a huge effort from histopathology led to a squad of 20 runners raising in excess of £500 for the charity and with t-shirts worn, balloons being waved by spectators and a very public team photo, awareness was certainly raised in Finsbury Park. Well done to all who took part! Abby McCarthy
£10,000. Knowing that all this walking was raising funds for Sarcoma UK really underpinned everything, making it one of the most rewarding things I’ve ever done. Guy Hinton
The Nightrider
Guy Hinton embarks on his challenge
Best foot forward 9 May, 10.30am, I set off from Monginevre in the French Alps and headed east. 44 days later, I arrived in Rome having walked around 570 miles along the Via Francigena, the medieval pilgrims’ route through Italy. In between, I saw some wonderful scenery, met many lovely people, stayed in charming monasteries and ancient hostels, ate too much ice cream and generally had a wonderful experience. I wanted to raise money for Sarcoma UK in memory of my fiancée Federica, who died last summer. Never having raised money for a charity before, I was overwhelmed and touched by the generosity of friends, family and especially those I’d never met. As of mid-July, we’ve raised over nearly
London Sarcoma Service fun runners
Team GIST
Heading off through SouthEast London close to midnight was pretty brisk with fresh legs and a heap of adrenaline, tempered with the knowledge that there were over 60 miles to cover. Ahead was a stream of strobing red tail lights and orange vests, bunching up at traffic lights and thinning out again in between. There were bits of London we’d rather not see again – anyone else on the ride will know what we mean – but cycling through the blue-lit arches of Tower Bridge, the sight of dawn breaking over the city from the terrace at Alexandra Palace and the early morning sunlight on the Thames from Waterloo Bridge wiped all that away. As if the climb to “Ally Pally” wasn’t tough enough, North London, we found, is in fact a largely mountainous region where bikes probably shouldn’t go – Highgate
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Fundraising
Support Group Spotlight
London Sue Harris checks out her local group
I The rowing challenge at Chequers shopping centre
deserves its name! Soon we were riding across the cobbles in Covent Garden, through the West End under endless Union Jacks and finally over Chelsea Bridge before the final uphill stretch back to Crystal Palace.
over £5,000. Thank you to everybody involved! Selina Lawrence
Great North Swim
My husband Jim is truly inspirational. I am so proud Definitely a night to of him; words simply are not remember for all the enough. This is the second right reasons. Would significant health issue he I do it again? Hmm – has had. He was diagnosed maybe your turn! (You with an insulinoma back can register for Nightrider in 2007 having been wrongly Dina Coldwell diagnosed for six years previous as 2013 at www.nightrider.org.uk). On behalf of TEAM GIST 2012, being epileptic. Following major thank you for your support! surgery, all was going well. He lost six Nick Keir - Team GIST stone and discovered running, however, an innocuous ‘ganglion’ cyst turned out to be a highly malignant synovial sarcoma. He underwent surgery Bobbies on the beat! removing four bones from his wrist and As a course of 20 Kent Police probationers replacing with fibular bone, followed by we chose to raise money for Sarcoma a course of radiotherapy. UK after a close friend and colleague of ours was diagnosed with sarcoma. We He is an amazing man and wonderful arranged: a cake sale; a charity Cinema dad to our two young boys aged 4 Night and raffle and a fitness challenge at and 1. I just hope whatever I can raise the Chequers Shopping Centre. Twenty from the Great North Swim can in Student Officers competed against the some way go to help eradicate this evil Chief Constable of Kent Police and his that had robbed so many people of so team. Each team rowed 11 miles, and many things. cycled 35 miles. Finally, I completed a tandem skydive. Altogether we have raised Dina Coldwell
Book today for Sarcoma UK! London - Brighton Cycle
Great South Run
Santa Run
28 October 2012
9 December 2012
16 September 2012
Location: Portsmouth Registration: £40 Sponsorship: £400 Distance: 16km
Location: Greenwich Park Registration: £20 Sponsorship: £100 Distance: 5km/10km
Registration: £70 Sponsorship: £100 Distance: 86km
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Email info@sarcoma.org.uk for more information Connect
• Sarcoma UK • Summer 1 2
’d been saying to myself for ages that I wanted to go to the monthly Sarcoma Support Group meetings, but somehow they always coincided with chemo days or when I wasn’t feeling too good. Then I got the latest email, for the Sarcoma UK dinner event at the Maggie’s Centre, Charing Cross Hospital, and for once the timing was perfect. Sue and her partner Neil I don’t really know what I expected, but I was surprised and impressed by the number of people there. Some, like myself, were cancer sufferers, others were partners and carers, but there must have been 20 people present. We were quite late in arriving but we were made to feel very welcome. Cancer can make you feel very alone: no-one really understands what it’s like to live with this every single day unless they have experienced it themselves, and suddenly, here I was, with a whole group of people who knew exactly what it’s like. To hear the struggles that people had overcome was inspiring, and just to sit and chat with fellow sufferers was uplifting. I think it was important for Neil too: all too often, the carers are just left to cope as best they can whilst us patients have the benefit of an entire medical team watching our every move, so to speak. For the first time, Neil met other people in the same position as him, people who have to sit and watch while we go through whatever it is we need to go through, and I think he found it both reassuring and comforting. Thank you!
www.sarcoma.org.uk
Support groups
Join the sarcoma community! Contact vicki.smith@ sarcoma.org.uk for help with marketing materials like leaflets and banners for your area.
Scotland - Glasgow
Meets: Third Wednesday of every month, 2.30 – 4pm Venue: Maggie’s Centre, Gartnavel General Hospital, 1053 Great Western Road, Glasgow G12 0YN Dawn Currie, Sarcoma CNS, 0141 301 7599 Fiona Murdoch, Maggie’s Centre, 0141 330 3311 (Mon-Tues) or 0141 357 2269 (Weds-Fri)
Newcastle and Tyneside
Meets: First Monday of every month, 7 – 10pm Venue: Function Room, Education Centre, Freeman’s Hospital Cuth Earl, Group secretary, 0191 520 1824 E: cuth_earl@yahoo.com
Manchester
Meets: Last Tuesday of Jan, Mar, May, Sept and Nov, from 7pm Venue: Manchester Royal Infirmary, Seminar Room 1 (adjacent to Ward 1) Contact: Lena Richards, Specialist Sarcoma Physiotherapist at the Christie 0161 446 3795 and 0161 446 3000 (bleep 12539) Ann Buchan, Sarcoma Clinical Nurse Specialist at the Christie 0161 446 3094 or 0161 446 3000 (bleep 12906) Helen Murray, Sarcoma Clinical Specialist Nurse at the MRI 0161 276 6167 (Pager 07659 537596) Maxine Cumbo, Specialist Sarcoma Physiotherapist at the MRI 0161 701 0267 or 0161 276 1234 (bleep 1954)
Sheffield (and surrounding areas)
Meets: Second Friday of Jan, Mar, May, July, Sept and Nov, afternoon and occasionally evening Venue: Cancer Support Centre, 23 Northumberland Road, just behind Weston Park Hospital, Sheffield or Royal Hallamshire Hospital Contact: Maxine Eades, Clinical Support Nurse E: maxine.eades@sth.nhs.uk
Merseyside and Cheshire
Meets: 3 - 4 times a year, 4-6pm Next Meeting - Tuesday 4 September 2012 Venue: University of Liverpool Cancer Research UK Centre, 200 London Road, Liverpool L3 9TA Sarah Massey, Acting Sarcoma Nurse Specialist, 0151 7065997 E: mcsarsup@gmail.com
East Midlands (and eastern counties) Meets: Third Tuesday of every month, 5 – 7pm Venue: Helen Webb House, 35 Westleigh Road, Leicester, LE3 0HH E: emssg@live.co.uk Oxford (inc Thames Valley, south and parts of south west England)
Meets: First Thursday of every month, 2-4pm (Contact below for room info) The Oxford Centre for Enablement (OCE), Nuffield Orthopaedic Centre, Windmill Road, Oxford OX3 7HE Pip Large, 01865 737861, philippa.large@ouh.nhs.uk Helen Stradling, 01865 738282, helen.stradling@ouh.nhs.uk W: www.oxfordsarcoma.co.uk/2011/01/oxford-sarcoma-support-group-2011
Bristol and South West England
Meets: Third Monday of alternate months, 17 Sept & 19 Nov, 4 - 6pm Venue: Jones Lang LaSalle (Boardroom), Berkley Square, Clifton, Bristol BS8 1HU Leigh Collins, Saroma CNS, 0117 342 4849, leigh.collins@UHBristol.nhs.uk, Chris Millman, Sarcoma CNS, 0117 340 3381, christine.millman@nbt.nhs.uk Website: www.bristolsarcomasupport.co.uk
London
Meets: Alternate first Weds and Thurs (once a month), 4 – 6pm Venue: Weds - Ground Floor Physio Gym in The Markus Centre, Royal Marsden Hospital, London SW3 6JJ. (NB: Easiest access to this.) Venue: Thurs – The Seminar Room, RNOHT, Central London Outpatient assessment Centre, 45 Bolsover Street, London W1W 5AQ W: www.londonsarcomasupport.net
South of England Exeter
Next date to be confirmed, likely to be in October. 10.30 - 12.30 am Venue: FORCE cancer centre, Corner House, Barrack Road, Exeter EX2 5DW Contact: Robert Oliver, 01392 406 151
Meets: 12 Sept; 14 Nov, 2 – 4pm Venue: Wessex Cancer Trust, Bellis House, 11 Westwood Road, Southampton SO17 1DL Louise Sharif, Sarcoma Clinical Nurse Specialist 07769 234598 and 02380 796752 E: louise.sharif@suht.swest.nhs.uk
Always check with your local group direct before attending, in case details have changed. This information is provided by the individual support groups and is the latest we have received from the groups.
www.sarcoma.org.uk
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News
News round-up The latest sarcoma-related news from around the country Vicki Aggar: sarcoma survivor and paralympian
metres athletics at the World Amputee and Wheelchair Games at Rio de Janeiro.
A sarcoma survivor who was once told she had just months to live, but miraculously recovered to become a paralympian and multiple world champion, is now responsible for helping other ParalympicsGB athletes fulfil their dreams at London 2012.
She then switched sports and went on to win gold at rowing’s 2006 World Championships at Dorney Lake, Eton, in the LTA mixed coxed four. An incredible career also brought her a bronze medal at the Beijing 2008 Paralympics before she retired after winning another gold in the adaptive mixed coxed four at the 2009 World Championships in Poznan, Poland.
Inspirational Vicki Aggar, 32, was just 21 years old when doctors gave her the devastating news that the golf ball-sized lump in her right heel was synovial sarcoma and that it had spread to her lungs. Having been given a less than 5% five-year survival prognosis by her medical team, the then Vicki Hansford initially chose to forgo any treatment or surgery and recalls that she spent the next 12 months “planning my funeral and blowing the house deposit I had saved on a trip to Australia”. But her first follow-up tests one year after diagnosis showed that the sarcoma had not advanced, so Vicki had a lower leg amputation in March 2004 followed by surgery to remove the lower lobe of her right lung. A talented teenage athlete, Vicki immediately threw herself back into sport post-surgery and while working at the University of Surrey in sports administration was accepted into the sprint training squad of legendary coach Margot Wells (wife of Olympic champion Allan Wells). “Sport gave me a lot of confidence after my surgery,” she recalls. “Initially when I was going for a run with a carbon fibre leg I was quite self-conscious and uncomfortable but after a while I started not to think about it.”
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Within 18 months of her surgery Vicki won a gold medal in the 100 Connect
• Sarcoma UK • Summer 1 2
The rowing training Vicki undertook, a similar programme to the stars of Team GB’s Olympic squad, was so intense that chest x-rays showed that Vicki’s right lung had grown bigger than it had ever been pre-surgery.
Vicki Aggar at the 2006 World Championships
Now as athlete services manager of the ParalympicsGB team, Vicki is responsible for the welfare of a hugely talented squad that includes Vicki’s husband, the Paralympic and world champion rower Tom Aggar. “I’ve always been a driven person but I’m probably more determined than ever now, because life is too short,” says Vicki. “In those early, dark days I never believed I’d ever be happy again. It may sound a cliché but I can honestly say I’m now living the happiest days of my life.”
Penny Brohn Cancer Care centre
Chapel Pill Lane Bristol BS20 0HH Helpline 0845 123 23 10
Being diagnosed with cancer isn’t a money spinner so my ears pricked up when a friend said the magic words regarding cost: ‘voluntary donation’. I rang up and booked places for myself and my partner on the two-day residential workshop ‘Living Well with the Impact of Cancer’. I was looking forward to talking to other people who have cancer, and I was
All hands on deck We are pleased to introduce Maya Wiles, our new Administration Assistant. Maya deals with general enquiries, research grants and fundraising. With a degree in Maths and an attitude to really make a difference, we are very excited to have her on board! Scuba diving, cycling and live music are a few of Maya’s hobbies.
pleased that my partner’s thoughts and feelings would be given the same weight at my own. I had heard of the Bristol Approach to cancer, which I understood to be nutritional. I didn’t realise it was a total mind, body and spirit approach and I certainly didn’t realise how organised the centre had become in its 32 years of service. The centre itself is modern, clean and offers couples separate rooms, if wanted. The grounds are landscaped, there is an art room, quiet areas for contemplation, a devotional room for prayer or contemplation, a library and many areas for socialising. The kitchen provides healthy meals and snacks throughout the day. The ‘Living Well with the Impact of Cancer’ workshop is broken down into seven components that range from nutrition to finance to relaxation. The experience was both relaxing and informative and back in London I do use some of the techniques we were taught. Linda Gibson
23&Me 1,000 strong! This international philanthropicallyfunded study is looking at the genetics of sarcoma. They recently announced that they have hit their 1,000 participant from the sarcoma community! A huge thank you to everyone who helped reach their target. Visit www.23andme.com for updates. www.sarcoma.org.uk
Research
Clinical trials in sarcoma If you feel that a clinical study might be of value you should talk to your doctors. Most of the trials below are multicentre studies. See our website for more information: http://sarcoma.org.uk/Looking-for-research-to-join Trial Name
Description
Status
ADULT SOFT TISSUE SARCOMA VORTEX
Phase III randomised trial - volume of post-operative radiotherapy in adult extremity soft tissue sarcoma
Open
VORTEX BIOBANK
Prospective sample collection for the VORTEX randomised radiotherapy trial
Open
TRUSTS (EORTC62091)
Phase III study of the safety and efficacy of trabectedin versus doxorubicin-based chemotherapy in first line for patients with untreated metastatic or advanced sarcoma. (Only open in Manchester)
Open
Axi-STS
Axitinib in patients with advanced angiosarcoma, leiomyosarcoma or synovial sarcoma (other arms now closed): a phase II open-label parallel-group (non-randomised) study
Open
CASPS
Phase II study of cediranib (AZD2171) in the treatment of patients with alveolar soft part sarcoma
Open
STRASS (EORTC62092)
A phase III randomised study of preoperative radiotherapy plus surgery versus surgery alone for patients with retroperitoneal sarcoma (RPS)
In set up
PARAGON
Phase II study of aromatase inhibitors in women with potentially hormone responsive recurrent/metastatic gynae cancers including sarcomas
Open
ULMS adjuvant study
Adjuvant chemotherapy in patients with high-grade uterine leiomyosarcoma. An international study with NCI(US), EORTC and NCRN (UK)
In set up
PICASSO
A study to evaluate the clinical benefit of palifosfamide tris administered with doxorubicin in combination, compared with single-agent doxorubicin for patients with unresectable or metastatic soft-tissue sarcoma
Closed
ERIBULIN (NCRN313)
A randomised open label phase III study to compare efficacy of eribulin versus dacarbazine in third line for patients with advanced soft tissue sarcoma
Open
Adults and young people soft tissue sarcomas GeDDIS
Phase III randomised – gemcitabine+docetaxel compared with doxorubicin as first line treatment in previously untreated locally advanced, unresectable or metastatic soft tissue sarcoma. Eligibility age 13 +
Open
VIT
Phase II randomised study of vincristine and irinotecan plus/minus temozolomide in advanced rhabdomyosarcoma patients aged <50 years
In set up
Paediatric soft tissue sarcomas EpSSG RMS 2005
Treatment of children with non rhabdomyosarcoma soft tissue sarcomas. Open to adults aged up to 21
Open
EpSSG non-Rhabdo
Treatment of children with non rhabdomyosarcoma soft tissue sarcomas. Open to adults aged up to 21
Open
BERNIE
A study of avastin (bevacizumab) in combination with standard chemotherapy in children and adolescents with metastatic rhabdomyosarcoma or non-rhabdomyosarcoma soft tissue sarcoma. Randomised phase II design
Open
primary BONE SARCOMAs EUROEWING 99
Multi-modal therapies treating patients with Ewing’s sarcoma
Open
EUROEWING 2012
Study of treatment for patients with newly diagnosed Ewings family tumours
In set up
EURAMOS 1
Phase III – strategies for resectable osteosarcoma based on response to pre-operative chemotherapy
Closed
OTIS
Phase II study to determine the efficacy and safety of conventional dose pral treosulfan in patients with advanced pre-treated Ewing’s Sarcoma
Open
Denosumab GCT
Safety study of denosumab in patients with recurrent or unresectable giant cell tumor of bone
Open
www.sarcoma.org.uk
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• Sarcoma UK • Summer 1 2
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Research
Treating advanced sarcoma Choices for doctors treating advanced sarcoma are growing, says Roger Wilson
I
t has been an important part of our charity work to track and support what is happening to develop new treatments for those who face advanced disease. Surgery and radiotherapy have a role to play, especially for disease which is localised to one area, and they can in some instances cure advanced disease, but chemotherapy is the mainstay of treatment. Chemotherapy is known as a ‘systemic’ treatment because it treats all parts of the body, looking for tumour cells to kill. Because of this indiscriminate activity there can be quite unpleasant side-effects. The two chemotherapy drugs most often used in sarcoma are doxorubicin and ifosfamide. These are readily available to oncologists and will be the ones first used to treat a patient. If there is no response, or if the patient relapses after treatment with these drugs, at one time there was little choice left. Now we have Trabectedin (Yondelis – Pharmamar) for many sarcomas, though not for bone or for all soft tissue tumours. It was only four years ago that trabectedin was licensed by the regulators and it took almost another year to persuade NICE that the NHS should fund it for sarcoma treatment.
use in sarcoma, though again it is not recommended for all sarcomas. We are hoping that this summer will see the drug quickly made available to oncologists once it is licensed by the EU. The Department of Health has decided not to refer pazopanib to NICE because it is already available to kidney cancer patients. This means that regional funders are asked to support the drug through the Cancer Drugs Fund set up two years ago.
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Now another new drug will shortly become available. The European Medicines Agency (EMA) has recommended that pazopanib (Votrient – GSK) is licensed for Connect
• Sarcoma UK • Summer 1 2
Genomic and expression profiling of recurrent well differentiated and dedifferentiated liposarcomas Researchers: Dr Janet Shipley, Dr Anastasia Constantinidou Grant award: £25,000 Duration: 2012 – 2014
Pazopanib is technically known as a ‘targeted therapy’, as opposed to a chemotherapy. It is taken orally – a pill a day – so it requires less hospital treatment. It is one of the new generation of therapies that aim to stop cancer cell growth by limiting the activity of certain proteins present in cancer cells. These proteins act as stimulants, sending signals to cells in the tumour to multiply or stopping them from dying naturally. This approach works well with GIST, a gastrointestinal sarcoma. A drug known as imatinib (Glivec – Novartis) is now standard of care worldwide for patients with advanced disease and sunitinib (Sutent – Pfizer) is also available for GIST patients who develop further problems. However clinical trials have shown that neither of these drugs works in the wider group of sarcomas.
What first piqued your interest in sarcoma research – and what keeps it going?
For some specific sarcomas there are other drugs available and in clinical trials. Often these are drugs which work well in more common cancers and the signalling proteins that they target are present in just one specific sarcoma.
How long have you had your own Sarcoma Molecular Pathology Team and how would you like to see it develop?
“Surgery and radiotherapy have a role to play, but chemotherapy is the mainstay of treatment.”
Clinical trials of a combination of two newer chemotherapies licensed for other cancers, gemcitabine and docetaxel, have also resulted in another option for oncologists and patients. A current trial is underway to assess whether this combination should replace doxorubicin as the first line of treatment.
I
t is your money that enables us to fund such high quality research into sarcoma. Sarcoma UK staff and Dr. Chris Hiley had the pleasure of meeting Dr. Janet Shipley and her dedicated team at The Institute of Cancer Research. Currently, we are funding their project:.
This changing world is very welcome. It offers new challenges for doctors to decide which treatment is best for any one patient at any one time but the sarcoma community worldwide has become very effective at sharing its knowledge.
My introduction to sarcomas came when I was brought into The Institute of Cancer Research (ICR) many years ago to provide particular technical expertise for a research programme on synovial sarcomas, a rare form of cancer that usually occurs near the joints of the arm, neck or leg. As a biologist, I was immediately struck by the diversity of sarcomas and fascinated by their resemblance to a range of normal tissues. This presents unique scientific opportunities and exciting challenges to our work of understanding the molecular mechanisms that cause sarcomas. Our focus is translating these new discoveries and insights into advances in patient care, and this is what continues to drive me.
I have run my own research laboratory at the ICR for many years. Through links with the Paediatrics Unit in The Royal Marsden NHS Foundation Trust, I have developed a long-standing interest in rhabdomyosarcomas, which are sarcomas that resemble muscle tissue and are more frequently found in younger people than adults. In the last few years, we have focused our interest more exclusively on www.sarcoma.org.uk
Research
Where the magic happens... Ever wondered what goes on in the mind of a sarcoma researcher? Janet Shipley reveals all... given the scale involved. We can use this to determine the genes that are abnormal in particular sarcomas, which takes us a step closer to finding new diagnostic and prognostic tests and also discovering new drugs related to these abnormalities that could ultimately be used to treat sarcoma patients. This machine is crucial to our work – so it is my least favourite piece of equipment when it breaks down!
rhabdomyosarcomas and other sarcomas, including those in adults such as liposarcomas. To reflect this dedicated focus, we recently changed our team name from the Molecular Cytogenetics Team to the Sarcoma Molecular Pathology Team.
What are the challenges a sarcoma researcher faces – and what do you and your team need to overcome them? Sarcomas represent around 1% of all adult cancers and 8% of childhood tumours, but there are many types of sarcomas and they can be quite different in how they behave clinically, so they need to be considered as separate entities in most research investigations. This rarity means that collecting specific material for studies is challenging. We collect the rarer childhood cancer samples from centres around the UK through the Children’s Cancer and Leukaemia Group and for adults locally through The Royal Marsden’s Sarcoma Unit, which sees around one third of those with soft tissue sarcoma in England. Historically, there has been less focus on sarcomas compared to more common cancers, including less funding available and less known about them. Today, the competition for funding with research on major cancers such as breast and prostate is still severe. Having more funds available for sarcoma research would definitely help us improve our knowledge of these diseases and ultimately help patients who develop them.
What is your sarcoma lab’s favourite/least favourite piece of cancer research equipment – what’s it called, how much was it and what does it do? We have one piece of equipment in our laboratory that has the pleasure and misfortune of being both my favourite and least favourite instrument. It is an automated digital microscopy www.sarcoma.org.uk
Dr Janet Shipley; Dr Zoe Walters talks about the use of laboratory equipment including pipettes; Dr Anastasia Constantinidou preparing liposarcoma cells for experiments
system that cost several hundred thousand pounds. It allows us to automatically capture images of cells from hundreds of different sarcoma samples from patients, all on a single microscope slide. The microscope slides have been processed to allow us to visualise and orient genes in individual cells, which is remarkable
Which is your most valuable piece of research equipment and why? Our most valuable piece of research equipment? – people. People are usually the most important component to any research project. Having the funds available to employ the brightest, most innovative and able scientists is crucial to making the advances that are going to help future sarcoma patients.
September is coming! Time to publicise our next ‘Call for Proposals’. This is an annual ‘event’ where all UK based scientific researchers – that includes doctors – are invited to bid for Sarcoma UK’s research funds. These funds are what our many generous supporters – you, basically – have raised for Sarcoma UK’s research over the last year or so. If you have made a stand against sarcoma by raising money for sarcoma research the ‘Call for Proposals’ is the first step in the process that decides where your money will eventually land up. We’re still funding what are relatively modest amounts in cancer research but we will increase this amount as soon as we can. Simply put – we will spend more as we raise more. We’re not quite in Cancer Research UK’s league yet but the advantage of donating money for cancer research to us means that every research pound that comes our way is guaranteed 100% to be spent solely on tackling sarcoma. We’ll be announcing the ‘Call’ on the website and sending direct messages to all our scientist contacts and medical friends to say “Here we are again, send us your best ideas”. They then have 8-10 weeks to think and construct a proposal and fill in the extensive Sarcoma UK application form, by the November deadline. We’ll then get them peer reviewed in our annual competition, share them with our Research Advisory Committee to assess and then make awards to the best ones in January. This year as we are improving our scope and services all the time, we have some new dedicated administrative help with research. Maya Wiles, who joined the charity only a couple of months ago, is getting stuck into her first round of running Sarcoma UK’s research processes. Welcome Maya.
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• Sarcoma UK • Summer 1 2
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Reports
Chordoma Foundation Europe Sarcoma UK is working collaboratively with the Chordoma Foundation to provide information and support to chordoma patients in the UK. Our Chief Executive, Lindsey Bennister reports back
I
n June, the first round table conference on the treatment of chordoma in Europe took place in Amsterdam, attended by leading experts from across Europe. It was organised by the Chordoma Foundation, which has just set up their European arm of the organisation and followed a chordoma patients’ meeting the previous day. Key areas of discussion included how to share expertise and improve coordination between medical specialists across Europe. The UK was well-represented at the conference. Adrienne Flanagan, pathologist, University College London, gave a presentation and described her recent research that identified brachyury as a clear marker for chordoma. Adrienne collects sarcoma tissue samples for a biobank and is keen to receive chordoma tissue samples from patients. At the conference, it was agreed that key priorities for the future are: Building knowledge of where the sarcoma experts are in Europe. Developing a consensus statement or position paper on the care and treatment of chordoma patients across Europe.
• •
• Improving information and •
What is chordoma?
is part • Chordoma of the sarcoma family of cancers and is a rare form of sarcoma that occurs in the bones of the skull and spine. Chordomas can occur anywhere along the spine, from the head to the tailbone. The most common locations are in the bone in the middle of the head (the clivus), and the vertebrae at the bottom of the spine (the sacrum or coccyx). Incidence is very small. Less than 450 people are diagnosed each year in the UK with primary bone sarcomas. Of these, around 28 people (6%) will have a chordoma (NCIN Bone Sarcoma
•
•
This event, held on 20th June in Dundee, was one of a series of study days organised by the Scottish Sarcoma Network throughout the year, for clinicians and professionals working in the sarcoma field. The study day, held during Sarcoma Awareness Week, was attended by over 30 people, including clinicians and specialist nurses from sarcoma services in Aberdeen, Dundee, Edinburgh, Glasgow, and Inverness. Representatives from Sarcoma UK, Teenage Cancer Trust, and Maggies in Scotland also attended, providing a patient input to the day. Presentations were given by The Teenage Cancer Trust about their ‘Jimmyteens’ website project for teenagers affected by cancer, and Maggie’s Edinburgh presented information about the “Psychological impact of delays in diagnosis for sarcoma”. More information about sarcoma services in Scotland is available at www.ssn.scot.nhs.uk. Connect
• Sarcoma UK • Summer 1 2
• •
guidance to patients in Europe. Building a network of chordoma experts, with a further meeting hopefully taking place at the Connective Tissue Oncology Society (CTOS) conference in November 2012.
Scottish Sarcoma Network Summer 2012 Study Day
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Incidence and Survival. Report number R12/05 May 2012). There are no drugs currently approved for the treatment of chordoma. Chordomas are generally slow growing, but are relentless and tend to recur after treatment. Chordomas occurring in the head are sometimes called brain tumours because they grow inside the skull towards the brain, however they do not actually develop from brain cells. Metastasis (spread of the tumour to other body parts) occurs in 2040% of patients with chordomas of the spine, and less than 10% of patients with skull-based tumours. Metastasis usually only occurs when the primary tumour is advanced or uncontrolled and rarely is reported at the time of initial diagnosis. (Information provided by the Chordoma Foundation)
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• Hans Keulen, Chordoma Foundation For more information visit the Foundation’s website: www. chordoma.org
National Sarcoma Study Day for Nurses, AHPs & Senior Clinicians Hillscourt Conference Centre Rose Hill, Rednal, Birmingham, B45 8RS Wednesday 24th October 2012 • 09.30 to16.00 Aim of the Day • To bring together health professionals working in sarcoma • To update knowledge and share good practice Guest Speakers • Bass Hassan • Rob Grimer • Matt Cadby (Picker Institute)
Topics include • Surgery and oncology updates • New initiatives in sarcoma care • Feedback on national patient survey and the patients perspective Quiz Ethics and dilemmas of sarcoma treatment
FREE registration
Contact luan_suckling@o2.co.uk or ring 07515 113915 Tea, coffee and lunch provided Supported by educational grants from
The bone & soft tissue cancer charity
Also supported by
www.sarcoma.org.uk
Statistics
Leiomyosarcomas
Key facts • Most common sites of diagnosis:
The work of the West Midlands Cancer Intelligence Unit, and their lead registry role for bone and soft tissue sarcomas, was introduced in the Spring 2012 edition of Connect. In this edition, incidence and common sites of diagnosis for patients with leiomyosarcoma are presented
L
eiomyosarcomas develop from the smooth muscle cells found all over the body. The overall age standardised leiomyosarcoma incidence rate fluctuates around nine cases per million population. There has been some variation in overall leiomyosarcoma incidence rates in the 25-year period 1985-2009. Between 1992 and 2004 the overall age standardised incidence rate rose significantly above the incidence rate observed in 1985. Prior to obtaining their own ICD-O3 morphology code in 2003, gastro-intestinal stromal tumours (GISTs) were registered Figure 1: Variation in age standardised leiomyosarcoma incidence rates with sex (England: 1985–2009. All sites)
as leiomyosarcomas. This partly explains why incidence rates of leiomyosarcoma have decreased from the year 2000 onwards. Leiomyosarcoma incidence rates are significantly higher in females than males, with age standardised rates of approximately 6.6 per million in males and 9.8 per million in females between 2007 and 2009 (Figure 1). Leiomyosarcomas are most commonly diagnosed in females aged 45 years and over, and the number of cases diagnosed in females Figure 2: Variation in number of leiomyosarcoma cases with sex and age group (England 1985-2009) 1000
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Males
Females
12 10 8 6
700 600 500 300 200 100
2
0 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+
4
85 87 89 91 93 95 97 99 01 03 05 07 09
Year of diagnosis
Figure 3: Leiomyosarcoma age specific rates in males and females (England: 1985 – 2009)
Age group
Figure 4: Proportion of leiomyosarcomas diagnosed at each anatomical site in each age group for males and females 100 90
50
Males
Percentage (%)
45
80
Females
40 35 30 25 20
70 60 50 40 30 20
15
10
10
www.sarcoma.org.uk
80+
80+
70-79
70-79
60-69
50-59
60-69
50-59
40-49
30-39
40-49
30-39
0-29 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+
Age group
0-29
0
5 0
is higher than in males for all age groups (Figure 2). Leiomyosarcoma age specific rates are also higher in females than in males under the age of 65 years, while this trend reverses in more elderly patients (Figure 3). This is primarily due to females having a higher life expectancy, and the comparatively smaller number of males inflating the male age specific rate in the older age groups. Leiomyosarcoma diagnoses are exceptionally rare in patients younger than twenty years of age.
400
0
Age specific rate (per million)
Females
800
Number of cases
Age standardised rate (per 1,000,000 persons)
Males
900
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limbs, retroperitoneum, gastro-intestinal tract, female genital tract • 12,199 leiomyosarcomas diagnosed in England 1985-2009 • Age standardised incidence rate: 9 per million persons • Number diagnosed in 2008 and 2009; 554 and 470 • Sub-types: – Leiomyosarcoma NOS (M8890, 11,764 diagnosed 1985-2009) – Epithelioid leiomyosarcoma (M8891, 279 diagnosed 19852009) – Myxoid leiomyosarcoma (M8896, 128 diagnosed 19852009) – Smooth muscle tumour (M8897, 28 diagnosed 19852009)
Leiomyosarcomas most commonly arise in the female genital organs (40% of female diagnoses) and in the limbs (16%). However, leiomyosarcomas can be diagnosed anywhere in the body, including in the connective tissues of the trunk (13%), the GI tract (14%) and the retroperitoneum (6%). Incidence rates in each anatomical site of diagnosis vary according to age; leiomyosarcomas of the gynaecological organs are most common in females aged 40 to 59 years, and limb and trunk leiomyosarcomas are most common in patients aged less than 30 years (Figure 4).
F M F M F M F M F M F M F M
Age group: male and female
Other sites Male genetalia Gynaecological organs Skin Organs within trunk GI tract Connective tissue of trunk Retroperitoneum Head, face and neck Limbs
Five year survival rates for under 60s have improved by 18% in the last 25 years but there is still much work to be done. Connect
• Sarcoma UK • Summer 1 2
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Donate
We rely solely on voluntary donations to fund vital sarcoma research, information and support
Online: www.sarcoma.org.uk By cheque: Make payable to Sarcoma UK and post to us at 49-51 East Road, London, N1 6AH At the bank: Made via any branch of HSBC use the following details to fill out one of their paying-in-slips: Payee: Sarcoma UK
Sort Code: 40-52-40
Account No: 00019763 Bank name: CAF Bank Ltd Branch: 25 Kings Hill Ave, West Malling, Kent ME19 4JQ By text message: Text SAUK00 £10 to 70070 Minimum donations £1 and maximum donation is £10. Gift Aid can also be added. Whether you are fundraising or raising awareness, we have many materials to support you. Email vicki.smith@sarcoma.org.uk to order t-shirts, running vests, sponsorship forms, wristbands and leaflets. www.sarcoma.org.uk 020 7250 8271 info@sarcoma.org.uk @Sarcoma_UK uk.sarcoma Registered charity: 1139869 (England and Wales) A company limited by guarantee: 7487432 (England and Wales)
Connect editorial and production team Editorial: Vicki Smith, Glyn Wilmshurst, Linda Gibson, Lindsey Bennister & Roger Wilson Design: INQ Design Ltd 020 7737 5775
Chair of Trustees Peter Jay Chief Executive Lindsey Bennister Honorary President Roger Wilson CBE Scientific/Medical Advisor Professor Ian Judson Board of Trustees Lesley Abraham Dr Jane Barrett Karen Delin 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.