Sarcoma UK: Connect, Spring / Summer 2013 by Sarcoma UK

Connect info@sarcoma.org.uk www.sarcoma.org.uk

The bone & soft tissue cancer charity

Spring/Summer 20 13

2 brothers

1 vintage bentley 7,610 miles 33 days

support them on their epic journey!

“Speak out!”

Become a Sarcoma Voice during Sarcoma Awareness Week

See page 5

Sarcoma UK research grants Four of the highest quality research projects are selected for grants worth a total of £100,000

Liposarcoma

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 all • Sarcoma types of sarcoma UK provides information and support for • Sarcoma anyone affected by sarcoma – patients, carers, family and friends

UK’s aim is to achieve the best possible • Sarcoma 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 carey donations and fundraising activities to fund its work Sarcoma UK relies solely on voluntary donations and fundraising activities to fund its work Sarcoma UK is staffed by a small team of five, 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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Impact Research UK has funded £455,000 of scientific and • Sarcoma medical research over four years. We have awarded a total of 12 grants to leading scientists, researchers and clinicians in centres of excellence around the UK Grants are awarded by our Research Advisory Committee 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: www.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 Information Sarcoma UK’s 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 Awareness Connect (Sarcoma UK’s publication) is sent out three times a year and distributed to a database of 5,000 Sarcoma UK has an online community where anyone affected by sarcoma can upload their photo and share their story: www.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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his edition of Connect is packed with information about our supporters’ inspiring and unique personal stories and activities that support Sarcoma UK’s vital work. Not everyone can run marathons, but everyone can contribute to the fight against sarcoma. Get involved during Sarcoma Awareness Week (17-23 June) – Remember when we asked you to upload your photo last year? It’s back, but with a twist! We are asking you to upload your photo AND share your story – Become a Sarcoma Voice and “Speak out!” (page 9). Sarcoma UK has been quietly making progress on the research front. Another four research grants were awarded in 2013, bringing our total investment into ground breaking sarcoma research to just under half a million pounds. Read about our new research grants on page 10. I am delighted that we have been able to fund innovative research into targeted therapies for sarcoma that may lead to new treatments and ultimately a cure. Sarcoma UK is also funding important research into two new technologies that aim to help the recovery of people following their sarcoma treatment, thereby improving quality of life for sarcoma survivors.

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 about 100 different subtypes of sarcoma that fall into three main types:

and Osteosarcoma. Other types, such as Myxofibrosarcoma and Chondrosarcoma, are more common in older people. Ten people every day are diagnosed with sarcoma in the UK and 14% of all childhood cancers are sarcomas.

The most common sub-types • Soft tissue cancers of sarcoma • Primary bone cancers Soft Tissue stromal tumours • Gastro-intestinal • Leiomyosarcoma or GIST – a soft tissue sarcoma found in the stomach and intestines • Fibroblastic sarcoma • Myxofibrosarcoma They can affect almost any part of • Liposarcoma the body, on the inside or the outside. stromal • Gastrointestinal Sarcomas commonly affect the arms, tumour (GIST) legs and trunk. They also appear in sarcoma (KS) • Kaposi’s the stomach and intestines as well as Angiosarcoma • behind the abdomen (retroperitoneal peripheral nerve • Malignant sarcomas) and the female reproductive sheath tumour (MPNST) system (gynae sarcomas). sarcoma • Synovial Rhabdomyosarcoma • About 3,800 new cases of sarcoma are diagnosed each year in the UK which makes up approximately 1% of all cancer diagnoses. Some types of sarcoma are more common in children and young people, such as Rhabdomyosarcoma, Ewing’s sarcoma

Bone Chondrosarcoma Osteosarcoma Ewing’s sarcoma Chordoma Giant cell tumour (GCT)

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www.sarcoma.org.uk

10/6/13 16:56:57

Personal experience

Turning the corner Long-haul travel is back on the schedule for customer service manager Emma Tickle, 29, less than nine months after she had surgery to remove a 31cm-long soft tissue sarcoma

ast September I was looking forward to going on holiday to Thailand with my partner John when I noticed a lump in my right thigh, which was only noticeable when I tensed my leg. I visited my GP who immediately instructed me to cancel my trip and referred me to an Orthopaedic specialist.

the distance I had to travel. I only suffered side effects of the treatment with three days to go! I had nasty burns at the back of my leg and on my bottom, which made it extremely painful to sit down (ouch!) but this only lasted a week to ten days (and was only a small price to pay!).

I had my first ’12 week’ check up on The specialist conducted an MRI* my lungs in January and it was all scan which revealed a 21cm-long clear – fingers crossed for the rest! lump. I was referred to the Sarcoma Multidisciplinary Team (MDT)** at I started physio again once my burns Emma and John I was determined to stay positive. I Liverpool. I was sent for a biopsy, had settled and am making great thought to myself ‘I am only 29, there which confirmed that I had a progress. I am driving and I have are so many things I still want to do… soft tissue sarcoma, and required gone back to work after five months have kids, visit Bora Bora… – I am immediate surgery to remove absence. *Magnetic Resonance going to fight this thing’. the tumour. Prior to meeting my Imaging (MRI) sarcoma specialist, I had been on This experience has really changed uses magnets to After I left hospital I had a leg brace the internet to ‘self diagnose’ and me – I’m a lot more patient, create an image and had to have physiotherapy to sarcoma had popped up a few times understanding and caring. I have a of the tissues of help me gain movement in my leg. so I had an idea what it was fresh perspective on both my personal the body. I worked hard to get better – although to hear an and work life and am much more **Multidisciplinary and get my leg working official diagnosis of carefree and relaxed. “This team (MDT) so I could regain my something so rare includes a experience has independence. was extremely Travel is one of my passions. As a key worker or shocking, and customer service manager for a sarcoma clinical really changed me – In December I started nurse specialist, I was already loyalty card company I have been surgeon and I’m a lot more patient, a six-week course obviously very lucky enough to travel the world. So other healthcare of radiotherapy at upset as my nana it was extra special that to celebrate understanding professionals Clatterbridge Cancer had passed away Valentine’s Day I recovered in time to involved in your and caring” Centre. Clatterbridge is a the same week. go to Amsterdam with John. And this care. Your MDT will support you 90 mile round trip from my week we’re going to book our first throughout your house so this took up a lot of On 16 October I was long-haul holiday since my operation. treatment to time, especially as the treatment was admitted to Broadgreen Hospital ensure you get less than a minute each day! The staff where my tumour was successfully I live life to the full (even more than the right were lovely and really accommodated removed, along with one and I did before!!) and am always looking treatment as and when you need it. me changing appointments due to three-quarters of the muscles in for the next adventure. my thigh. The vastus lateralis was completely removed and most of my intermedius muscle. The tumour was a whopping 7.7lb and 31cm long One thing that I did struggle with was talking about my illness, especially as I was confused, - incredibly it had grown 10cm since scared and so emotional, and had so many friends and family who wanted to know what was my MRI in just three weeks. going on, so I wrote a blog – www.dizzytix.wordpress.com. It’s had over 30,000 views so far and I have had other sarcoma patients and carers contact me via this channel which has been The official diagnosis was a ‘mixed so lovely. soft tissue sarcoma, grade 3’. I just My Clinical Nurse Specialist (CNS) also advised me of a Sarcoma Support Group which is held wanted the tumour out of me. After in Liverpool every eight weeks. I have attended the last two meetings and it’s been fantastic to the surgery I stayed in hospital for meet other people and share experiences. (See page 12 for support groups in your area.) six nights, but from the day of the surgery I felt I had turned a corner.

My support network

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• Sarcoma UK • Spring/Summer 13

10/6/13 16:57:04

Fundraising

Keep on running If 36,000 people actually run the London Marathon, could you be one of them in 2014? Download an application form at www.sarcoma.org.uk/running Cheika TIME: 04.26.53 On Sunday 21 April, the hottest day of the year so far, I ran the London Marathon – my first ever and having the Sarcoma UK’s one official place. As a keen, but not particularly talented runner, I was eager to take on this personal challenge for a cause close to my heart. I am a Consultant Radiologist working with the East Midlands Sarcoma Network. A chance enquiry at the Sarcoma UK stand at the British Sarcoma Group (BSG) conference 2012 got me into this predicament. So five months of training in the worst weather ever, 16lb lost, two dress sizes less and £3,800 later I’ve done it and I am absolutely delighted!

Michael TIME: 04.30.00 At 55, my best running days were behind me! Having only ran 10k, I started to look at the websites of various charities in the hope of making an informed choice as to the charity I should support. I was attracted to Sarcoma UK because I had recently become aware of the disease. I reckoned that if I could raise £2,000, that would actually make a difference to their published figures and more importantly, to the research and awareness projects it is committed to. Without doubt, the Marathon is a wonderful event. It was an experience like no other. The crowds were magnificent. It was like the Olympics had come back to London for the day!

Adam TIME: 04.27.35

Almost three years ago my sister was diagnosed with a rare form of cancer. The shock of the diagnosis hit us all but with the help of her medical team in Leeds she has now received her two and a half year all clear. Sarcoma UK was recommended to her as Connect

a place for advice. Training was tough with the British weather, niggling injuries and my own laziness to confront, but the end goal of crossing the finishing line in one piece and the thought of raising money for such a good cause has kept me going. Hopefully I will enjoy the day itself but I am sure I will look back on the experience with very fond memories... Just don’t ask me to do it again!

Megan TIME: 04.44.38 I want to tell you about an amazing person, Rob – whom I met at university – who made such an impact on everyone he met, in such a positive way. It is a horrible thing that someone we all knew would do so much with his life should be taken at the age of 21. If he had come through this he would have done so much good. I will never forget him, his passing left a huge gap in my life. I signed up to the Marathon because I hope that what will be an amazing year and an amazing experience for me, will in turn be an amazing year for Sarcoma UK that deserves so much more funding and recognition. Most of all I hope I will do Rob proud and do some of the good I know he would have done.

Ashley TIME: 04.10.25 18 weeks, 72 days, 345 miles, 3,105 minutes, 51.75 hours, 2 pairs of shoes, and £2,000 raised for Sarcoma UK, and I ran the 2013 London Marathon for my friend Pat Searle who bravely battled sarcoma cancer. With every mile I ran and with every pence donated I could see the hope and satisfaction in Pat’s eyes. The day of the Marathon came and I knew that Pat was not well enough to cheer me on at the race. Like many journeys the Marathon was easy in the beginning, but by the end it was simply a matter of putting one tired beaten down foot in front of the other. As I struggled I thought of Pat’s ability to endure and when I felt tempted to quit or walk away I thought about her and fought my way to the finish. I did it. We did it. It saddens me to say that Pat passed away one month after the Marathon was finished. The Marathon symbolises the triumph of human spirit, and so does Pat.

Anna TIME 04.10.55 I ran in memory of Jo Bryant, who lost her battle to sarcoma in January, after an incredible and inspirational fight. I had never previously heard of this cancer and wanted to help create an awareness whilst raising money to help others. The crowds were absolutely incredible with

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every section of the route full of people cheering and shouting. The camaraderie amongst runners continues to be inspiring and I would urge anyone thinking about it to don their running shoes and give it a go! I’ve done 14 marathons and London is the best!

Anna Taylor TIME: 04:30:02 From top to bottom: Cheika, Michael, Adam, Pat & Ashley, Anna, Megan and Anna with her family

I love running because as well as keeping me fit it clears my mind. My ambition has been to do the London Marathon. I chose to run for my mum who was diagnosed with a sarcoma. After a biopsy it was found to be a schwannoma, which is benign. My mum received treatment from sarcoma specialists at The Queen Elizabeth Hospital Birmingham and the schwannoma was successfully removed. My husband Ben, Mum, Dad, brother Dan, family and friends have been there for me every step of the way! www.sarcoma.org.uk

10/6/13 16:57:06

Personal experience

Driving force Daniel and Antony Woodcock are driving a vintage Bentley from Peking to Paris to honour their late father Louis’ long-held ambition to take part in the rally, while raising vital funds for Sarcoma UK. Here, Antony explains how Louis’ courage and love of life is the real driving force behind the adventure

y younger brother and I will have finally found ourselves at the footsteps of the Great Wall of China, as you read this, revving the engine of our late father’s pride and joy, a 1927 Vintage Bentley, and about to embark on the journey of a lifetime. Ahead of us will lie a 33 day long, 12,247 km route across two continents, eight countries and some of the remotest places on planet Earth. Our goal, to complete the gruelling Peking to Paris endurance rally – the longest and toughest challenge for man and motorcar – all in aid of Sarcoma UK and in loving memory of our father, Louis Peter Woodcock. With little over a month to go, and with no mechanical experience to our name, both my brother and I are eagerly awaiting the challenge ahead. However, getting to the start line has not been easy for us. It has taken two long, hard years to do so and has involved many tears and much heartache in the process. The hardest of all has been the recent loss of our father, who at the age of 54 sadly passed away in September 2012 after a long-fought battle with cancer. The Peking to Paris rally officially commences on the 28 May 2013. However, for my brother and I our journey officially began over two years ago on the 24 December 2010. It is a day we will both never forget… It had snowed in Scotland and my brother and I, who both work in London, had flown home to spend Christmas with our parents.

www.sarcoma.org.uk

Daniel and Antony Woodcock and their vintage Bentley

For anyone who knew our father On the morning of Christmas Eve this would come as no surprise. He our father took us both for a long walk during which time he explained was a man with a strong “gung-ho” attitude, a love of classic that he had been diagnosed cars and a passion for with cancer, something “In his adventure. It would no son wishes to hear. He went on to mind this meant therefore seem only that his next explain that in the achieving more of his fitting great adventure two months since wacky goals in life and would be the diagnosis he had already received top of his list was the Peking to Paris rally! treatment at the Peking to Paris Royal Infirmary Unfortunately it in Glasgow. This rally” was not to be… In treatment had resulted in March of 2011, after regular an operation to remove monitoring of my father’s condition, a large sarcoma tumour from the sarcoma had returned, only his left shoulder. At the time this time it had spread further into he believed the operation had been successful and as a his left arm. A further operation in result of this scare he told us June of 2011 would see a second sarcoma tumour removed, but again that he wished to take full this was to no avail. In September advantage of the second of 2011 the sarcoma had become so chance life had granted him. aggressive that my father was faced In his mind this meant achieving with only one option if he wished more of his wacky goals in life and top of his list was the Peking to Paris to survive – amputation of his left arm. For a man of over 6ft tall with rally, which he wished to complete a strong physical presence and with both my brother and I. Connect

• Sarcoma UK • Spring/Summer 13

Personal experience

It is difficult when I look back at my father’s battle with cancer, but when I do I am comforted by one lasting memory – that throughout his entire struggle there was not a day went by that my father let cancer get the better of him. He would get out of bed each morning as if there was no cancer, no pain, no discomfort. He For my family the next 12 months never stopped travelling with my would be a continuous emotional mother, he never stopped working rollercoaster. Like most cancer and growing his own company (BDL patients my dad underwent a Hotels); even after the cancer took lengthy course of chemotherapy, his left arm he still did everything constantly changing drug type the way he had before. He even and dosage in an effort to beat “He never still drove his beloved 1927 the disease. He travelled stopped travelling Bentley! up and down the country for advice, changed his with my mother, After his passing my brother diet and his lifestyle in an he never stopped and I found an old blue file effort to boost the effects working and in his home office simply of the chemotherapy. By entitled Peking to Paris. Within July 2012 my father had growing his own this file were all the necessary been administered all known company” forms and documents required chemotherapy drugs available in to compete in the rally along with the world for sarcomas, but nothing a short note addressed to us both. had halted the onslaught of such an Originally my dad had planned aggressive unknown and no one to compete with both my could give us answers. brother and I. As time went on I sense even By August 2012 my father he feared he would was half the man he was not be able to make and only a glimmer of it, but it still drove his former self from a him to go on with physical perspective. his preparations. It He had aged twenty was upon reading years in the space this note that my of two, lost over brother and I knew 30kg in weight, had we had to finish almost no colour left what he had begun, in his complexion and, for all our sakes. although he would never admit it, he was in constant Although my father is no pain and discomfort. After longer with us I would like to believe battling courageously for almost two Louis Woodcock that on the 28 May 2013 as we stand years the cancer finally took its toll and wife Carol at the footsteps of The Great Wall of and my father sadly passed away on China and look out at the long road the 9 September 2012. ahead we are not alone and in some way he is still with us giving us all Talking about this as I do now I can the help we will need to complete say that my father endured much such a challenging journey… from personal hardship during his two Peking to Paris. year battle with cancer, a disease that threw everything at him. As a son it is heart-breaking to lose a We hope to raise £50,000 for father at any age, and to any cause, Sarcoma UK - to donate or to but to physically watch a loved simply learn more about one be slowly worn away by such a Team Woodcock please visit relentless disease is soul destroying and few words can describe the www.teamwoodcockp2p.co.uk emotional adversity. an active lifestyle this is no easy decision, but my dad was a fighter. In September of 2011 his left arm was successfully amputated giving him what we hoped was a stronger chance of beating such an aggressive yet unknown disease.

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You are running from John O’Groats to Land’s End, doing a marathon a day - Why? The reason I’m doing the Run from John O’Groats to Land’s End is simple – to prove that any barrier can be overcome. I’m living proof that having a disability shouldn’t stop you from achieving your goals. I’m a strong believer in living a life without limits; what my life has been about is accepting who you are and making the most of it. Once you’ve done that, you can push the barriers as far as they’ll go. Winning a Gold medal at the 2012 Paralympics in London was a stepping stone on this mission and the Run is the next stage for me on this. Hopefully I can pass on a message of hope through my dedication to sport and be an inspiration to all. Where did the idea for the Run come from? My inspiration is a man called Terry Fox. Terry was an amputee with sarcoma cancer who attempted to run the breadth of Canada before his death at the age of 22. Sadly he never completed his challenge. The idea of a run the length of Britain came from him and has been in my mind for about five years. Who are you doing the Run for? I’m running for two charities, Sarcoma UK and Scope. Both are fantastic causes and I chose them for specific reasons. I had never run a mile when I first met Simon [Mellows], my close friend and mentor. Sadly, Simon died of chondrosarcoma and is a constant inspiration on my incredible journey from running my first marathon, to becoming the marathon world record-holder for leg amputees, and more recently, Paralympic 200m champion. Simon and Terry became a major driving force behind my Run. Sarcoma UK is the main charity in the UK dealing with all types of sarcoma, and aims to achieve the best possible standard of treatment and care for patients with sarcoma. Scope’s vision is also very close to my www.sarcoma.org.uk

10/6/13 16:57:09

Fundraising

Marathon man Remember the excitement when he won gold in the 200m Paralympics last year? Richard Whitehead MBE, Sarcoma UK’s first Patron, reveals the details of his challenge this year: 40 marathons in 40 days, with a target to raise £1 million for charity! www.richardwhiteheadrunsbritain.com heart. Its vision is a world where disabled people have the same opportunities as everyone else. It is important to drive change across society also. Who is supporting the Run? Virgin Media are the title sponsors of Richard Whitehead Runs Britain – and it’s safe to say that without their support the Run simply couldn’t happen. Virgin Media are committed to a programme of accessibility, and the Run is just one of the ways that this manifests itself. How much do you hope to raise? It’s very difficult to predict, but the aim is £1 million. Members of the public can go to www. richardwhiteheadrunsbritain.com to register interest in supporting me on the Run. This can be one of three ways. 1) A simple donation 2) Register to run with me (Marathon, 10km, 5km and 1km distances) 3) Join me in the family fun day event, in my hometown, Nottingham on Sunday 8 September. When is the Run and what is the route? I’ll be starting in mid-August and the Run should take around 40 days. I’ll be running down the west of the www.sarcoma.org.uk

country and will be visiting various locations on the way – the route will be available on my website! How are you preparing for the Run? This will be the biggest challenge I’ve ever attempted

not just physically but mentally as well. I’ll need to be in top physical condition, I have a great team behind me to make sure I’m in the shape of my life. And then on the mental side, we are creating various strategies – but the best way of combating any mental stress is seeing people cheering me on! I’ll need to dig deep, but I’m confident I’ll succeed.

More about Richard... Richard in training!

What is the reason for your disability? I am a congenital above the knee double amputee, which means that I was born with my disability.

How has running changed your life? When I first began training for the marathon I did my running at night. I was very unsure about what kind of reaction I would get from the How did you first get into sport, public. It’s not every day that you and then into marathon running? see someone running outside with no legs. Like any other runner it’s My parents first encouraged me tough when you begin training to get involved in sport. They introduced me to mainstream clubs and you require a lot of motivation to train hard. Mentally it is just because they wanted me to get as tough and I needed to remain involved. I started with swimming strong for the challenges ahead. and gymnastics in local clubs and progressed from there. There was a I always wanted to be accepted as an great support mechanism in those athlete at races and not to be singled clubs, they were all very friendly out as a disabled runner. Running and encouraging and that gave me has given me a great opportunity to a great starting point. hopefully inspire others to overcome I hadn’t run until 2004 because up until then the technology was very expensive, but I needed a new challenge so joined an athletics club. I ran my first marathon in 5 hours and 19 minutes, but I am now the Marathon World Record holder for a leg amputee with a time of 2 hours 42 minutes and 52 seconds. I am also the leg amputee World Record holder for the Half Marathon with a time of 1 hour and 14 minutes.

barriers set by others. Can you describe the feeling of running with artificial legs? When running on my flex runs (artificial legs) I feel a sense of freedom. The technology has enabled me to realise an ambition of being able to run and I have found great reward from being able to do so. When I run, I run with no knee joints so my legs are straight. This means that I run differently to other runners and use twice the amount of energy to run.

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• Sarcoma UK • Spring/Summer 13

Sarcoma Awareness Week

Sarcoma Awareness Week 17-23 June 2013

“Speak out!” Feel inspired!...

There are many ways in which you can help us raise awareness during this week and beyond! Remember the ‘Many faces of sarcoma’ online photo montage of anyone touched by sarcoma? Thanks to over 300 of you – patients, carers, friends, family and healthcare professionals who put your picture up on our website. It’s back again for Awareness Week 2013, but with a twist! This year, we are asking you to become a ‘Sarcoma Voice’ and “Speak out!” about your personal experience of sarcoma (postcard enclosed). Every face tells a story – log on to www.sarcoma.org.uk/voices and share yours today! We want everybody to get on board and shout louder than ever before!

Probably the toughest event on the planet! A challenge made for big kids who are tough enough to reduce themselves to screaming like little girls! Jumping into a pool of ice might not sound appealing but it certainly makes you feel alive. Repeated jolts of electricity as you crawl through water isn’t something you’ll want to do daily, but it’s definitely funny to see your mates yelping and squirming their way through it! 12 miles and 22 obstacles of facing fears. Drudging through mud. Jumping and falling into cold and muddy water. And lifting and pulling anyone who needs it isn’t easy, but it makes for great memories! Michael Maguire

do it!

sarcoma voices “speak out!” Are you enthusiastic? Would you be willing to share your sarcoma experience? Who? Sarcoma Voices are people like you, who have been affected by sarcoma cancer, either as a patient, carer or family member, who want to share their story to help raise awareness and improve services.

The bone & soft tissue cancer charity

Sarcoma Voices are people with experience of any type of sarcoma – bone, soft tissue and GIST. They are from any age group and live anywhere in the UK.. What can you do? • Use your experience to improve sarcoma services • Use your experience to raise awareness of sarcoma so that more people understand more about it

how do i get involved? Log on www.sarcoma.org.uk/voices and tell us your story and add your photo! Email us voices@sarcoma.org.uk with a short summary of your personal sarcoma story and contact details Phone us 020 7250 8271 to talk to a member of the team

“Following my sarcoma diagnosis and treatment, I was motivated to set up a sarcoma support group with the assistance of Sarcoma UK and my consultant oncologist. The group gives members the chance to share experiences and identify areas of common concern around, for example, information provision and rehabilitation services. The group has begun to use its collective ‘voice’ to work collaboratively with sarcoma health services to improve patient experiences and outcomes.” Tony Grover, East Anglia sarcoma support network

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• Sarcoma UK • Spring/Summer 13

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Sarcoma Awareness Week Feel inspired!... Feel inspired!... Face your fears: freefalling I7 April 2013... That’s a date we will never forget; and if the date does manage to fade away from our memories, the experience we shared that day is as set as the grooves one would find on a rock.... permanent. Our group of jumpers, “The Earth Watchers”, included Mrudula Jadhav, Ketaki Purohit, Pranali Deshmukh, Sherron Furtado and myself. We could hardly dare imagine what we would feel like during those few seconds of free-fall! The 45-minute wait after getting registered and harnessed-up at the meet-and-greet just fed our collective anxiety and while the shouts and screams of plunging jumpers did not help that nagging feeling of “It’s still not too late to quit!”, the smiles on their faces just encouraged our curiosity to hold on to the mission at hand. On top of the Transporter Bridge, it was an altogether different story; at 160ft above ground you tend to see the world in a different light and we realise we might be a little in over our heads. But we remembered that we were expressing our support for the brave individuals who face fears similar to ours; similar yet more real and serious than anything we had awaiting us. When someone faces fear and conquers it on a day-to-do basis, our concerns with taking a leap into the known appeared trivial... and trivial it was indeed! The seemingly never-ending seconds of free fall... the feeling of the wind getting sucked out of you... the tug of the rope at your ankles and your body going stiff... And when you realise that you don’t have to fight it, but rather work with it... That’s not a life-changing experience, it’s a life making experience! To all those who fight the good fight; you have our support and respect and you are not alone. Together we will fight sarcoma in whichever way we can!. Aravind Rajagopal

Feel inspired!...

First army finisher – support from the Falkland islands Running the Port Stanley marathon was one on the toughest things I have done to date. I trained for just four weeks beforehand after I found out that my younger sister Verity had a nasal sarcoma. It was diagnosed as quite an aggressive cancer and grew at an alarming rate. I thought that the marathon would be a perfect opportunity to raise awareness and hopefully raise her spirits a bit and help her in her fight against cancer. I found out about Sarcoma UK and immediately set up the webpage through JustGiving. My fiancée Alice publicised the website amazingly and filled it with pictures of me and Verity. The response that we got was amazing. We were all overwhelmed by the kind donations and messages of support that we received from family and friends old and new – not to mention the kindness of strangers from all over who showed their support for our cause. In the end we raised £3,285 for Sarcoma UK including one mystery, anonymous donor of £510. The last few miles of the marathon were incredibly tough, but I was undoubtedly spurred on by all the support that we had received and the inspiration that is my little sister Verity, who manages to stay positive through thick and thin and is one of the bravest people I have ever met. I ran in a time of 3hrs 19minutes and I have no doubt that I shaved a fair few minutes off through strength that I drew from my sister. When I returned to the UK, Verity was finally operated on. The surgeons at the Royal Marsden have done an excellent job and completely removed the tumour from her face. Early signs are very encouraging and she now faces a course of either chemo or radiotherapy. It has been a rough ride so far but we are increasingly positive. I was incredibly proud to run the marathon for Sarcoma UK and for my sister Verity and I wholeheartedly thank all of those who helped and supported us along the way. David Landon

rolling into the right side of the weekend! Sarcoma UK came to Bristol on the evening of Friday 3 May. After a long week’s hard work in the office the descent began to the local pub, Slug and Lettuce St Nicholas Street. There we were armed with Tabitha and Peter Sarcoma UK literature, T-shirts, wrist bands, jewellery and DJ H’Inglish to start the weekend vibe. Guessing games to win a bottle of bubbly, raffle tickets galore with wonderful prizes saw us raise £200 for Sarcoma UK. Thank you to everyone involved to make this small affair a successful one. We look forward to seeing you at the next event. Tabitha Taya www.sarcoma.org.uk

do it!

london-brighton sunday 8 september 2013 Snap up one of our places in this momentous cycle ride, power to the pedal! Psyche yourself up to sign up for the 54-mile for Sarcoma UK! Registration Fee: £25 Sponsorship Level: £100 Book your place today! www.sarcoma.org.uk/Fundraising

Connect

• Sarcoma UK • Spring/Summer 13

Research

New sarcoma research grants Following our rigorous peer review process and meetings of our Research Advisory Committee and Board of Trustees, four of the highest quality sarcoma research projects from across the UK were selected for grants worth a total of £100,000. The projects range from working directly with sarcoma patients to improve rehabilitation after treatment, through to research carried out in the lab to discover new drug targets that may develop into new treatments for patients in years to come. They will be carried out in centres of excellence across the UK from London to Aberdeen. Read on to find out more... Looking for new targeted treatments for high grade sarcoma…

Investigating Rhabdomyosarcoma… TAZ & Rhabdomyosarcoma: TAZ expression in human samples, TAZ transformation of myoblasts and YAP/TAZ drug discovery

Validation of clinically relevant oncogenic receptors in high grade human sarcoma as potential drug targets

Dr Henning Wackerhage, University of Aberdeen Funding: £24,080 over two years

Professor Ted Hupp, University of Edinburgh Funding: £17,000 for one year Despite advances in conventional chemotherapy and radiation, complete cures for most cancer types, including sarcoma, remain elusive. The challenge is to develop highly targeted therapies that kill cancer cells but leave normal cells healthy. A big advance in cancer treatment in the past 20 years has been the discovery and application of ‘targeted therapies’. Targeted therapies “Professor are medicines that Hupp and his team specifically act on parts aim to investigate these of the sarcoma cells and either kill the cells or targets to determine whether stop them growing. As they should be ‘shortlisted’ into they act preferentially on the sarcoma a larger therapeutics programme cells they cause less aimed at improving the health damage to normal and longevity of patients calls and have fewer side effects. So far, the with high grade use of targeted therapies in sarcoma” sarcoma has been limited. This team in Edinburgh plans to rectify this situation.

The first step in producing targeted therapies is to identify ‘drug targets’ by using cutting edge instruments that can capture targets from very small biopsy samples. They will be focusing on ‘high grade’ sarcoma, as this is one of the most aggressive types affecting a relatively large number of people. This project builds on pilot data that has already identified three promising ‘drug targets’ from biopsies. Professor Hupp and his team aim to investigate these targets to determine whether they should be ‘shortlisted’ into a larger therapeutics programme aimed at improving the health and longevity of patients with high grade sarcoma. Connect

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This project is based at the University of Aberdeen, but will involve collaborators from London (Institute of Cancer Research) and as far afield as Switzerland (Swiss Institute of Bioinformatics). Rhabdomyosarcomas are cancers where cells resemble dividing muscle cells. These cancers are aggressive and occur mainly in children. In this project, Dr Wackerhage and his team will study a gene called TAZ that they have found to be highly active in rhabdomyosarcomas. During the project, the team will study various aspects of the relationship between TAZ and rhabdomyosarcoma. They will then go on to screen around 300 natural compounds to search for ones that will inhibit this gene, as such compounds could be future drugs to treat rhabdomyosarcoma patients. Further, they will develop “They will assays (experimental screen around procedures) that can be used in future to 300 natural test for drugs that compounds to search could be used to treat for ones that rhabdomyosarcoma.

will inhibit this gene”

Dr Henning Wackerhage and his team in Aberdeen www.sarcoma.org.uk

10/6/13 16:57:18

Research

The search for new chordoma treatments… New therapeutic agents for chordoma Professor Adrienne Flanagan, University College London Cancer Institute Funding: £28,000 over two years Professor Flanagan is considered a leading expert in the field of chordoma research, both in the UK and internationally. Chordoma is a primary cancer of the bone “Thanks to that occurs in people of these efforts, the all ages. Due to the size, location and scientific community nature of these now has the opportunity for tumours, surgeons can often find them the first time to test compounds difficult to remove on a number of chordoma fully. Despite cell lines to see if there is this, surgery is the mainstay of a drug that can stop treatment because the tumours the tumours are resistant to radiogrowing” and chemotherapy. This project is undertaking lab-based Richard Whitehead with experiments to identify new therapies to treat this grantholders, disease. Professor Flanagan and her team have made Craig Gerrand 5 chordoma cell lines (chordomas that grow in the and Sherron laboratory and can be used as models of the disease). Furtado Thanks to these efforts, the scientific community now has the opportunity for the first time to test compounds on a number of chordoma cell lines to see if there is a drug that can stop the tumours growing.

tracking equipment, will provide new, meaningful information about physical activity and functioning in adults who have been treated for lower extremity bone or soft tissue sarcoma. Following a successful application to Children with Cancer to investigate “Researchers these technologies in survivors of childhood in Newcastle have bone and soft tissue been working on two sarcoma, Sarcoma UK is providing the new devices which Newcastle team with can directly measure a further grant to physical functioning extend their findings to cover all age groups. in hospital and at

home” Researchers in Newcastle have been working on two new devices which can directly measure physical functioning in hospital and at home. One is a digital activity monitor, similar to a pedometer, and the other is a wireless motion tracking system, similar to those used in the film industry. If this study shows the devices to be useful, there is a good chance that the use of these devices would become a more standard part of the assessment of physical functioning in patients after treatment for sarcoma. This in turn may help us better understand the impact of different treatments on the lives of this complex and varied group of patients.

They will study the effects of approximately 1000 different compounds on the 5 cell lines they have created, and on a further 3 chordoma cell lines that others have made. Any compounds that look promising will be tested in various ways using forefront technology. They hope to find a small number of ‘hits’ that will stop the tumours growing, and this will lead to clinical trials where drugs related to the successful compounds could be used in the treatment of chordoma patients.

Studying the impact of treatment on sarcoma survivors… Evaluation of physical functioning in survivors of bone and soft tissue sarcoma – a feasibility study of two new technologies Mr Craig Gerrand, The Newcastle Upon Tyne NHS Foundation Trust Funding: £30,040 for six months The aim of this project is to test whether two new devices, a digital activity monitor and Xsens motion www.sarcoma.org.uk

Sarcoma News Spring-Summer final version 2013.indd 11

Connect

• Sarcoma UK • Spring/Summer 13

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Support & information

Support groups around the UK Join the Sarcoma UK community! Scotland – Glasgow

Contact: Vicky Wren, Associate Advanced Nurse Practitioner, 01865 738 282 or 01865 741 155 Bleep 173, vicky.wren@ouh.nhs.uk Wendy Perrin, Specialist Nurse Practitioner, 01865 737 861 or 01865 741 155 Bleep 221, wendy.perrin@ouh.nhs.uk Website:www.oxfordsarcoma.co.uk

Meets: Third Wednesday of every month, 2.30pm - 4pm Venue: Maggie’s Centre, Gartnavel General Hospital, 1053 Great Western Road, Glasgow G12 0YN Contact: Dawn Currie, Sarcoma CNS, 0141 301 7599 Fiona Murdoch, Maggie’s Centre, 0141 330 3311 (Mon-Tues) or 0141 357 2269 (Weds-Fri)

Bristol and South West England

Meets: Third Monday of alternate months, 4-6pm. Venue: Jones Lang LaSalle (Boardroom), Berkley Square (top left hand corner of square), Clifton. Bristol BS8 1HU More information: Next meetings – 17 September and 19 November Contact: 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

Newcastle and Tyneside

Meets: First Monday of every month, 7-10pm Venue: Function Room, Education centre, Freeman’s Hospital Contact: Cuth Earl, Group secretary, 0191 520 1824 E: cuth_earl@yahoo.com

Merseyside and Cheshire Sarcoma Support Group

Meets: 3 - 4 times a year, 4-6pm Venue: Roy Castle Foundation, 200 London Road, Liverpool L3 9TA Contact: Sarah Massey, Acting Sarcoma Nurse Specialist, 0151 7065997, mcsarsup@gmail.com Rob Myers, Patient, 07710 123960, rob.myers51@googlemail.com Lesley Abraham, Patient and Sarcoma UK Trustee, lesleyabraham@hotmail.com

Exeter

Meets: Next date to be confirmed, likely to be in October. 10.30am – 12.30 pm Venue: FORCE cancer centre, Corner House, Barrack Road, Exeter EX2 5DW Contact: Robert Oliver, 01392 406 151

Manchester

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.

Meets: On the fourth Tuesday of May, Sept and Nov, from 7pm to 8.30pm. Venue: Manchester Royal Infirmary, Seminar Room 1 (adjacent to Ward 1) from 7pm 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 the following alternate months (January, March, May, July, September and November), 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

Meets: Southampton (July 10th, Nov 13th); Bournemouth (June 22nd, Sept 11th ). The group is from 2-4pm Venue: Sunrise of Bassett, 111 Burgess Rd, Southampton SO16 7AG, (02380 799449) and also in Bournemouth at The Grove Hotel, 2, Grove Rd, Bournemouth BH 1 3AU (01202 552233) www.thegrovebournemouth.co.uk Contact: CNS Helen Coundley (Southampton) and Imogen Batty (Royal Bournemouth Hospital –Nurse Practitioner 01202 704938) W: www.sarcoma-support-south.org.uk

London

Meets: Alternate first Wednesdays and Thursdays (once a month) 4-6pm. Venues: First Wednesdays of alternate months: Ground Floor Physio Gym in The Markus Centre, Royal Marsden Hospital, London SW3 6JJ. (NB: Easiest access to this). OR First Thursdays of alternate months: The Seminar Room, RNOHT, Central London Outpatient assessment Centre, 45 Bolsover Street, London W1W 5AQ Website: www.londonsarcomasupport.net

East Anglia Support Group

Meets: Last Friday of every month 1-3pm Venue: The Big ‘C’ Centre, Norfolk and Norwich Hospital, Colney Lane, Norwich, NR4 7UY Contact: Tony Glover on 07941 434351 or eassn@talktalk.net

Rehabilitation factsheet We are currently developing our range of information materials so we can help provide an even greater source of support. We have recently updated our popular factsheet, Rehabilitation for sarcoma patients.

East Midlands and eastern counties

This factsheet is for anyone who has been diagnosed with sarcoma. It explains what services are available, how they can benefit your recovery and how you can be referred to these services.

Oxford (including Thames Valley, south and parts of south west England)

Available July 2013 Pre-order your free copy on 020 7250 8271 or info@sarcoma.org.uk

Meets: Third Tuesday of every month, 5-7pm Venue: Helen Webb House, 35 Westleigh Road, Leicester, LE3 0HH E: emssg@live.co.uk

South of England

Meets: First Thursday of every month, 2-4pm Venue: The Oxford Centre for Enablement (OCE), Nuffield Orthopaedic Centre, Windmill Road, Oxford OX3 7HE More info: Contact below to find out which room/confirm dates etc. Connect

• Sarcoma UK • Spring/Summer 13

www.sarcoma.org.uk

Information Research

Ten years on… Our founder, Roger Wilson CBE, looks back at Sarcoma UK’s newsletter

ow can it be ten years ago that we sent out the first sarcoma newsletter?! Our approach was unusual in the world of cancer patient information and support. Most small cancer patient organisations were membership organisations, run like a club. They relied on their members for funding and their ambitions were limited, even if admirable. We knew that there were very few sarcoma patients and that they were widely dispersed. We knew that quite often patients did not meet others facing a similar diagnosis. We also knew that many of the leading doctors treating sarcoma wanted sarcoma specific information for their patients. If we provided it, they would distribute it. We decided to focus on information and foster contact between patients. We set out to deliver information to a standard which respected our readers. To do that, design and content were important and we felt that print quality had to be the best we could afford. Leading doctors gave us information and checked the medical accuracy of our articles. The first edition came out in April 2003 and was distributed by specialist doctors and the (then very few) sarcoma specialist nurses. However good the newsletter looked the organisation behind it (Sheelagh and myself) was seriously challenged! The kitchen table was submerged in paper – envelopes, labels, stamps. Journeys to the car with boxes of newly printed newsletters, parking on the double yellow lines by the Post Office, the adventure grew with each edition. We had a commitment as a patient www.sarcoma.org.uk

no centre. We looked at research and identified a number of new drugs in clinical studies. Looking at these drugs today one of them has failed to show any benefit, two of them are now licensed and are mainstays of treatment, and a fourth is currently in a major study. As a snapshot of where we were in 2003 it is interesting to make a comparison with today. Professor Judson’s meeting has evolved to become the British Sarcoma Group – with over 250 delegates at its last three day conference in March.

Honorary President, Roger Wilson CBE with his wife, Sheelagh

and a carer to help things change, but we really did not know how this would help, we just believed it could. Looking back at the content of the first edition it seems very naïve today. We reported on a one-day meeting at the Royal Marsden hosted by Professor Ian Judson for 50 specialist clinicians. We looked at the incidence of sarcoma – the best data we could find suggested about 1800 cases per year in the UK, but we did say that seemed to be an under-estimate. We looked at what a MultiDisciplinary Team (MDT) meant for patients (and got ticked off by a radiologist for confusing radiographers and radiologists!). We noted that where there was a regional centre offering specialist treatment, the process of diagnosis and the time to treatment was better than where there was

The work of the West Midlands Cancer Intelligence Unit (page 15) as a sarcoma lead registry for the National Cancer Intelligence Network tells us that the incidence of sarcoma in the UK is at least twice that reported in 2003. This does not mean there are many more cases – it is just that they are being better identified and the data submitted about them to the cancer registries is accurate and more complete. The MDT is at the heart of all treatment. The majority of patients now go for treatment at a centre with a specialist MDT because of the NICE Guidance which was developed between 2004-2006 by a small team of specialist doctors, patients and NHS managers. And what you are reading now, is our latest newsletter, Connect – ten years on! Collated and edited by a team of professional staff at Sarcoma UK’s Headquarters and over 5,000 copies distributed. Something tells me that these ones are not all hand stamped!

Connect

• Sarcoma UK • Spring/Summer 13

News

News round-up Find out what’s been happening in the world of sarcoma and see how you can get involved! Patients & Relatives: Lectures & Forums for those we serve Venue: Nottingham Conference Centre, United Kingdom Date: 8 September 2013 The Centre for Spinal Studies and Surgery of Nottingham University Hospitals would like to invite you to our NSpine patient day! This will take place on Sunday, 8 September 2013 at the Nottingham Conference Centre located in the heart of the city centre. This day will be full of

lectures on popular spinal conditions and coping strategies, as well as forums led by our participating guest charities. These lectures will be hosted by our own faculty, as well as patient organisation representatives, addressing any questions you may have about the spine. This is a great opportunity to meet our faculty and find out what support is available for you.

British Sarcoma Group conference report Challenges in Sarcoma East Midlands Conference Centre, Nottingham - 27 February 2013 In partnership with Sarcoma UK, GIST Support UK, and Bone Cancer Research Trust Almost 200 delegates took part in a working day that brought together people affected by sarcoma and professionals in the sarcoma field. Hosted by the British Sarcoma Group as part of its Annual Meeting, this was the first time that a whole day was dedicated to sessions for patients and professionals together.

Delegates were people personally affected by sarcoma who actively raise awareness, campaign, Thanks to the exclusive sponsorship run support groups, or act as a of the League of Friends of the “Very Queen’s Medical Centre, valuable exchange representative on health bodies. The day provided opportunities registration is free of charge; of experience for them to meet professionals in however we will be accepting into their the sarcoma world and take part donations which challenges.” in interactive workshop sessions. will go to all “Highly Challenges in Sarcoma participating attendee motivating to charities meet patients present on and share insights the day.

into their challenges.”

Registration Challenges in Sarcoma is now open, attendee come along and meet Sarcoma UK!

Visit www.nspineforpatients.co.uk for more information! Connect

• Sarcoma UK • Spring/Summer 13

Sarcoma News Spring-Summer final version 2013.indd 14

iposarcomas account for 11-12% of all soft tissue sarcomas. They develop from the fat cells (adipocytes) found all over the body, and so can occur at any anatomical site. The overall age standardised liposarcoma incidence rate has increased significantly over the last 25 years, from 3.8 cases per million in 1985-87 to 6.2 cases per million in 2007-09 (Figure 1). Liposarcoma incidence rates are significantly higher in males than females, with age standardised rates of approximately 8.0 cases per million in males and 4.4 cases per million in females in 2007-09. Further research is required to investigate the significant increases in male agestandardised incidence rates in more recent years. Historically, most liposarcomas were classified as liposarcoma NOS (not otherwise specified) or myxoid liposarcomas. More recently, three major specific sub-types of liposarcoma have been identified: well-differentiated liposarcoma (now synonymous with atypical lipomatous tumour), pleomorphic liposarcoma and myxoid liposarcoma. There were 6,370 liposarcomas diagnosed in England between 1985 and 2009. Of these, 49% were liposarcoma NOS, 24% were myxoid liposarcoma, 14% were well-differentiated liposarcoma and the remaining 13% were pleomorphic liposarcoma. In 200709 the incidence rates of the four main sub-types were significantly different, with liposarcoma NOS being the most common (2.5 per million), followed by welldifferentiated liposarcoma (1.5 per million). Myxoid liposarcoma and pleomorphic liposarcoma were the least common specific types, and showed very similar incidence rates (1 per million). Liopsarcomas occur in adults of all ages, but are most common in people aged 50-79 years (Figure 2). They are exceptionally rare in people under the age of 30. The difference between male and female liposarcoma rates becomes greater with increasing age. Age specific www.sarcoma.org.uk

10/6/13 16:57:32

Statistics

Key facts • Most common sites of diagnosis:

Liposarcomas

soft and connective tissue of the trunk, limbs, retroperitoneum • 6,370 liposarcomas diagnosed in England 1985-2009 • Age standardised incidence rate: 6 per million persons • Number diagnosed in 2008 and 2009: 398 and 361 • Sub-types: – Liposarcoma NOS: 3,153 diagnosed 1985-2009 – Well-differentiated liposarcoma: 877 diagnosed 1985-2009 – Pleomorphic liposarcoma: 843 diagnosed 1985-2009 – Myxoid and round cell liposarcoma: 1,498 diagnosed 1985-2009

The West Midlands Intelligence Unit continues its articles for Connect, with a specific focus on soft tissue sarcomas – Liposarcomas incidence rates in males climb at a faster rate than female rates, to the extent that incidence rates in males are double those of females in patients aged 75 years and over (Figure 3).

(20%).This distribution is very similar for all four common subtypes, with the exception of myxoid liposarcoma, 55% of which arise in the limbs and less than 10% in the retroperitoneum (Figure 4).

Liposarcomas most commonly arise in the limbs (35% of diagnoses), the connective tissue of the trunk (20%) and the retroperitoneal cavity

Survival rates for patients diagnosed with liposarcoma have improved significantly since the mid 1990s.

Figure 1: Variation in age standardised liposarcoma incidence rates with sex (England: 1985–2009)

Figure 2: Variation in number of liposarcoma cases with sex and age group (England 1985-2009)

500

Males Females

Females 400

Number of cases

Age standardised rate (per 1,000,000 persons)

Males

6 4

300 200 100

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+

07-09

05-07

01-03

03-05

99-01

97-99

95-97

93-95

91-93

89-91

87-89

85-87

Age group

Year of diagnosis (3-year rolling)

Figure 3: Liposarcoma age specific rates in males and females (England: 1985-2009)

Age specific rate (per 1,000,000 persons)

Males

Females

Figure 4: Liposarcoma variants in the most common anatomical sites (England: 1985–2009)

Well differentiated liposarcoma

312

Pleomorphic liposarcoma

573

195

112

1090

188

142

885

Liposarcoma NOS/rare

155

336

Myxoid liposarcoma

272

681

130

330

100

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+

Age group www.sarcoma.org.uk

Sarcoma News Spring-Summer final version 2013.indd 15

Other sites Male genetalia Gynaecological organs Skin Organs within trunk Breast GI tract Connective tissue of trunk Retroperitoneum Head, face and neck Limbs Connect

• Sarcoma UK • Spring/Summer 13

10/6/13 16:57:33

By cheque Online

Make payable to Sarcoma UK and post to us at Sarcoma UK, 49-51 East Road, London, N1 6AH

Donate www.sarcoma.org.uk

Make via any branch of HSBC using the following details to fill out one of their paying-in-slips:

By bank

Payee: Sarcoma UK Bank name: CAF Bank Ltd Branch: 25 Kings Hill Ave, West Malling, Kent ME19 4JQ Sort Code: 40-52-40 Account No: 00019763

We rely solely By text Donate by on your text message voluntary donations Text SAUK00 ÂŁ5 to fund vital to 70070 Gift Aid can also sarcoma research, be added. information and support 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 Design and layout: INQ Design Ltd 020 7737 5775

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.