Page 1

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

The bone & soft tissue cancer charity

Winter 20 1 2/13

Richard Whitehead MBE

Cometh the hour,

double amputee, Paralympic gold medallist and now Sarcoma UK’s first ever Patron. See page 4

cometh the man

4

Richard Whitehead Our new Patron tells us why he is committed to our cause

13

Understanding sarcoma A new patient’s guide. Your personal questions, all in one place

15

Fibrosarcomas An insight into this specific type of soft tissue sarcoma


From the Chief Executive

Sarcoma UK’s key messages • Sarcoma UK is the main charity in the UK dealing with all types of sarcoma • Sarcoma UK provides information and support for 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

-

• • •

Happy New Year!

T

o kick start 2013 we are proud to announce Sarcoma UK’s first Patron – Paralympian Richard Whitehead MBE. I’m sure you will recognise Richard on our front cover, after he powered through to win the gold medal in the 200m in the London 2012 Paralympics. Richard has a very personal connection with sarcoma through his close friend and mentor, Simon Mellows (see page 3). Richard talks about his motivation for supporting our charity, what inspired him to break down personal barriers and his constant determination to achieve sporting success (page 4). We are delighted to work in partnership with Richard and feel privileged he is helping us raise much needed funds towards sarcoma research. We also have an exciting development in a research project that we recently funded, find out more on page 10. I hope you will join Richard in supporting Sarcoma UK in 2013. Best wishes

Impact Research Sarcoma UK has funded over £355,000 of scientific and medical research over three years. Grants were awarded to four leading scientists, researchers and clinicians in centres of excellence around the UK Support Sarcoma UK promotes online support for 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 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 UK 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 3000 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)

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.

• • • • •

2

Lindsey Bennister Chief Executive

Connect

• Sarcoma UK • Winter 1 2/13

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 100 different sub-types of sarcoma within these broad categories. These sub-types are determined by the tissue of origin (the tissue in the body where the tumour originally formed), genetic characteristics or by other molecular analysis undertaken by expert pathologists. The most common sub-types are: Soft Tissue                                                            

• Leiomyosarcoma • Fibroblastic • Myxofibrosarcoma • Liposarcoma stromal • Gastrointestinal tumour (GIST) sarcoma (KS) • Kaposi’s • Angiosarcoma peripheral nerve • Malignant sheath tumour (MPNST) • Synovial • Rhabdomyosarcoma

• Soft tissue cancers Bone • Primary bone cancers • Osteosarcoma stromal tumours • Chondrosarcoma • Gastro-intestinal (a type of soft tissue sarcoma found • Ewing’s sarcoma in the stomach and intestines • Chordoma commonly known as GIST) • Giant cell tumour (GCT)

www.sarcoma.org.uk


Personal experience

Little and Large Our Trustee, Nicky Mellows, shares with us her moving experience of her husband Simon’s fight with sarcoma and building a close relationship with our new Patron, Richard Whitehead MBE

S

imon first became aware of a very painful knee in late 2002. He underwent all kinds of treatments – physiotherapy, painkillers and an arthroscopy – and was told it was nothing serious. We persevered with finding out what exactly it was because Simon was now in so much pain he couldn’t sleep at night. The scan showed that there was a growth above his right knee and Simon was referred to the Birmingham Royal Orthopaedic Hospital (BROH) where he was diagnosed with Grade 3 Chondrosarcoma in the summer of 2003.

regarding his mobility over the coming 12 months. They suggested that walking with one stick would be a massive achievement; Simon was back playing his beloved game It had taken us about of cricket just ten weeks eight months to “Simon after his amputation and get to a correct no stick in sight. His diagnosis and this was back playing determination was form of cancer his beloved game really incredible and was relentless; of cricket just ten infectious; it was an we knew we were exceptionally happy up against it. weeks after his time. We had one We were hoping amputation.” daughter, Ellie, who was to opt for a limb 18 months old and I found salvage operation, out I was pregnant with our but, on the day of the second daughter Sophie, which was operation the surgeon declared like the icing on the that following the results of the scan cake. from the previous day, more drastic measures should be taken, so literally Simon joined the within an hour of the operation, Nottinghamshire Simon agreed to have his right leg Disabled Cricket Team amputated above the knee – no mean feat as Simon was six foot eight – it was here that he met Richard Whitehead, inches tall. After the operation, I saw him in the High Dependency Unit and who was born an above the knee, double legged his first words were, “Hi chick, I’m legless again!”. I didn’t know whether amputee. He was no more than four foot tall to laugh or cry but seeing as he was without his prosthetic making a joke out of something so legs, which he preferred massive, I had to be strong. After the when playing cricket, operation Simon was determined to so imagine if you were live as full a life as possible. Simon at six foot eight inches and Richard at We visited the Nottingham four foot as the star Limb Centre to have a talk about expectations. They asked Simon what opening batsmen of the team. They caused realistically he wanted to achieve www.sarcoma.org.uk

great amusement and tremendous difficulty to face for opposing sides and they were nicknamed ‘little and large’ for the obvious reasons!

Simon and Nicky Mellows with Ellie and Sophie

Nottinghamshire Disabled Cricket team. Simon is third from left in the back row and Richard is furthest right in the front row

Simon then started with a persistent cough. Our worst fears were confirmed when we were told that his cancer had returned to the centre of his chest and in his left lung, the tumour in the centre of his chest was inoperable. My world could have collapsed around me, but Simon was so strong that he pulled me along with him. Simon received two more rounds of chemotherapy, another scan showed that the tumours had started to grow again. The lovely doctor in charge of Simon’s case was amazing – just how do you tell someone news like this? He told us there was no point in continuing this treatment, it was a hard regimen to undergo and to put Simon through it without real hope was in all honesty pointless. This was an incredibly hard time: we had two young daughters and for the first time I was facing a grim reality that Simon had all the odds stacked

Connect

• Sarcoma UK • Winter 1 2/13

3


Personal experience

against him. I had attended all the hospital appointments and spent hours by his bedside and our lovely daughters had been spending most of their time with our fabulous families who pulled out all the stops for us. We had to tell them this news and it was so tough. In August 2005, Simon got a temperature, I called the hosptial and they said to bring Simon in as soon as possible. He had a scan and was told that his left lung had collapsed, his temperature stabilised, then in the shower one morning, Simon could not get breath in. Another scan showed that the tumour in the centre of his chest was blocking his airways and putting massive pressure on his heart, which was beating double time to cope with the pressure. He was put in an ambulance and taken to the Glenfield Hospital with blue lights flashing and me in hot pursuit in my car. Simon’s scans had been sent separately. On 29 August, Simon was watching the Ashes on telly in his room in the Glenfield, all the family visited, grandparents brought Ellie and Sophie and we all went to the hospital cafe, Simon wheeled himself, we all had lunch together and then back to Simon’s room. The rest of the family left wishing Simon luck for his operation the next day, I left at about 8 o’clock wishing I could stay. My dad rang me at 2am, 30th August to say the hospital had called him and we should go now. I was dressed and waiting for dad at the top of the road; we got to the Glenfield but we were too late. Simon had passed away, the tumour blocking his airway had grown a tiny bit more and obstructed his airways completely.

4

My lovely gentle man had gone. The following days passed in a blur but one vivid memory I have is when, after Simon’s funeral, I walked outside and there were all his cricketing friends and team mates stood there in their whites with their bats held aloft and there on the end, his good mate, Richard. Connect

• Sarcoma UK • Winter 1 2/13

My inspiration Richard Whitehead MBE, Sarcoma UK’s new Patron and longterm supporter, had never run a mile when he first met his close friend and mentor Simon Mellows (see page 3), who sadly died of sarcoma. Here, Richard recalls how Simon has been a constant inspiration on his incredible journey from running his first marathon, to becoming the marathon world record-holder for leg amputees, and now Paralympic champion

I

’d always dreamt of being able to run a marathon. I imagined the applause and support of the spectators and the feeling of crossing the finish line. But these were only dreams. Being an above the knee, double legged amputee, just being able to run at all was more realistic! I was inspired as a youngster by a Canadian athlete called Terry Fox. Terry became a single legged amputee after a battle with osteosarcoma – a type of bone cancer. After losing his limb Terry attempted to run from East to West of Canada. His strength and determination showed that with a big heart and the will to succeed you can overcome barriers put in front of you. So at the start of 2004 I entered the New York Marathon which would take place 11 months later. When I entered I had no running experience and had not even run one mile!

running on my knees using sport cups. That’s how I run when I don’t have my prosthetic legs. I then built enough confidence to brave the open roads. Mainly running at night so as not to attract any attention, I began to experience the freedom of running outside. I was hooked. Like any other athlete at the beginning running was hard work and a gruelling experience. I was getting pains on top of other pains; at times I felt I was getting nowhere and was just running backwards. At that stage I could only run for about 30 minutes. Getting the strength and belief to run further was one of the biggest obstacles to overcome.

By the time summer arrived the most I had ever run was ten miles. The ten mile runs destroyed me physically and mentally and the distance and heat had given me blisters the size of 50 pence pieces. This running was getting me down. With weeks to go before the marathon I hit rock I wanted to run not just for myself, bottom and didn’t want to run. It but I also wanted to raise money for “At that was the strength that Simon lots of charities that had helped me whilst I was growing up. time I was running showed me that I believe helped me get through those My decision was reinforced on my knees using final weeks. Simon is with me when a month before in every race I run and every the race my close friend, sport cups. That’s challenge I take up. I have Simon was diagnosed with how I run when I don’t been so lucky to have been Chondrosarcoma – another have my prosthetic great friends with Simon and I type of bone cancer. Simon learnt so much from him. I still and Terry, having both been legs.” believed that I would complete affected by sarcoma, became a the New York Marathon, even if it major driving force and inspiration took me a week.  behind my run. My training started in February 2004. I began running mainly on treadmills in my local gym. At that time I was

In the October, five weeks before the big race, I experienced a Eureka moment. A fellow amputee heard www.sarcoma.org.uk


Personal experience

That was until I was told I was ineligible for the marathon in the greatest sporting event held in my own country: London 2012. The International Paralympic Committee (IPC) said that I wouldn’t be able to compete in the marathon at the Paralympics as it is open only to arm amputee runners, and the classifications couldn’t be mixed. I wrote a letter to the IPC criticising their decision; the organisation is supposed to promote equality. My issue with Paralympic sport has been that certain events are exclusively available to certain people with certain impairments. Sport is about choices and opportunities, not about categorisation and groupings. 

was feeling nauseous and extremely distressed thinking I would struggle to make the journey across the Atlantic, never mind running a marathon. about some special running legs that were available. After a little research I found the technology that could help to make my running dream a reality. But there was a problem: the price tag of £2,000 per leg had put them out of my reach. Disappointed, but still determined, I continued the gruelling training sessions on my knees using my sport cups still believing. Then out of the blue I received some fantastic news. Ossur, the company behind the running leg technology heard about my marathon challenge and donated two flex run, running feet. With my local prosthetics team helping to fit and make sockets for these feet it now seemed realistic that I would at least start a race! With just 13 days to go before the New York Marathon my running legs were ready. These were my “saving grace” but time was running out. My Prosthesist, very aware that I am a determined individual, advised me to take it easy and just wear these new flex runs around the house for the first couple of days. So I listened to his advice and then hit the road that evening running for just over  two hours! With just two days to go before the big day, I needed to push myself to breaking point, to find out how far I could run. So with some water, a banana and mobile phone I ran until I could run no more. I managed 18 miles, but I could no longer walk, I www.sarcoma.org.uk

On the 7th November 2004 the New York Marathon had arrived at an early rise at 4.30am and I began preparing for the start of the race at 8.30am. My motivation in those hours before and during the race was that I wasn’t going to let anyone down. I have a lot of self belief and was going to give it my best shot.

Encountering yet another barrier, I focused my attention on the 200 metres. I won gold. I pointed to the sky and dedicated this to Simon. I came and saw and conquered. That’s why I gave the two-gun salute at the end. I’ve got all the support around me and that is why I’m successful. Along with my mum, dad and girlfriend, Simon’s widow, Nicky, and her two children were all in the stadium cheering me on.

The race was an amazing experience. Fellow runners and spectators support took me to a different level. I was inspired by the warmth and camaraderie during the entire race. Many people say that I am an It was an unbelievable experience. inspiration. All I can say is that I I finished the race in 5 hours 18 “With some am an athlete, who has been minutes and it was amazing. given the opportunity to run. Thousands of people were water, a banana Running is a sport that, due to pushing me to the finish and phone I ran until  advances in technology, I am line. Their words of encouragement and support I could run no more. now able to participate on a level playing field with my pulled me into the finish line I managed 18 miles, able-bodied counterparts. from 20 miles – 26 miles. The feeling when I crossed the finish line was the best thing I have ever felt. The last mile was so emotional, my goal was in sight. I had achieved something that I never thought I could achieve. In 2006, I took part in the New York Marathon a second time specifically for Sarcoma UK, raising £5,500. I beat my previous time and ran in memory of Simon. I wanted to run faster, longer and stronger with goals that reflect that. Over the years, I continued to run marathons, ultra marathons, and do coast-to-coast runs all over the world.

but I could no longer walk.”

I am honoured to be Sarcoma UK’s first ever Patron and hopefully I can pass on a message of hope through my dedication to sport and be an inspiration to the sarcoma community. I will use my role positively, to increase awareness of sarcoma cancer and have plans to fundraise to help the charity achieve its objectives and pump even more money into sarcoma research. If I could sum up everything I do, it would be what’s tattooed on my right arm: Cometh the hour, cometh the man. www.marathonchamp.com Connect

• Sarcoma UK • Winter 1 2/13

5


Fundraising

Radiologist on the Run Getting fit is a healthy way to kick start your new year. Sarcoma UK’s London Marathon 2013 runner – Cheika Kennedy, Consultant Radiologist – tells us about her increased level of fitness and excitement at representing Sarcoma UK How did you feel when you were informed of the news that you are Sarcoma UK’s runner?

Who is supporting you?

With Sarcoma UK receiving so many worthy applications, being selected for their one place felt special. I was genuinely delighted, rather shocked and slightly overwhelmed and have been a little over-excitable ever since! I think I am going to become a running bore to all my friends and colleagues as I recount the details of my last training run. This is going to be a huge challenge for me, physically and mentally, but I am prepared to be utterly dedicated to the task. I feel privileged to be running for a cause so near to my heart.

The whole Sarcoma Multi Disciplinary Team (MDT) is supporting me. As our MDT coordinator, Claire, stated, “by support, I take it you mean cash?!” I am confident the team will help me raise the funds required.

What is your connection with sarcoma?

What fundraising activities are you planning?

I am a Consultant Radiologist with a specialist interest in oncology and non-vascular intervention. I form part of the East Midlands Sarcoma Service (EMSS) and am responsible for retroperitoneal sarcoma and gastro-intestinal stromal tumours (GIST) imaging, staging and image guided biopsy. I also offer a lung radiofrequency ablation service to sarcoma patients with limited lung metastases.

I have planned a quiz of the year in my village, my CT team are all keen bakers and we often fundraise with a cake stall. We intend to target the Valentine’s Day audience on February 14th with a heart-themed bake off.

What inspired you to run the London Marathon for Sarcoma UK?

6

then genuinely forgot all about it!

I have been a keen (but not particularly talented) runner for some time and running is my preferred exercise of choice. I love the freedom of running outdoors (and it saves a fortune in gym fees!). I have run the Robin Hood half marathon twice previously and have always wanted to run the London Marathon. I made a chance enquiry at the Sarcoma UK stand at this year’s British Sarcoma Group conference and completed the application form in April and Connect

• Sarcoma UK • Winter 1 2/13

At home, my long suffering husband, David, will have to take the lead looking after our three young daughters, Jemima (8), Bethan (6) and Eliza (4), particularly as the training schedule intensifies. My eldest is delighted for me as she is a keen cross country runner.

My husband plays in a 60s covers band, The Mucky Pups, and has offered his services for a musical fundraising evening. I also play flute in Enderby Windband and intend to ask if they will put on a concert for us.

Tell us about your average working day... I work in a large teaching hospital in Nottingham and have a passion for teaching and training. I often start the day with plain film tutorials for our specialist trainees. X-rays are the mainstay of diagnosis for most primary bone tumours, and recognising the early plain film changes is crucial for prompt management. On the MDT day, I spend over two hours reviewing all

You can sponsor Cheika here:

www.justgiving. com/Cheika Kennedy

the scans in advance of the meeting. We receive many tertiary referrals for soft tissue and retroperitoneal sarcomas, often involving innumerable complex studies. Advance preparation is crucial. The MDT usually lasts 1.5 hours and more work is generated here, with biopsies to organise and staging to undertake. In the afternoon, I run a general CT oncology list, often involving staging sarcoma patients. There is usually a hotline from the sarcoma clinic, which runs concurrently, and I expect to hear from my team at least 5 times during the course of the afternoon! We are a good team and it’s always nice to feel an integral part of the process. I feel privileged to work with the EMSS.

For those of you who sadly missed out on a place in this year’s London Marathon, you can represent Sarcoma UK in these running events...

Adidas Silverstone Half Marathon March 2013 • www.adidashalfmarathon.co.uk Run through the historic Silverstone motor racing circuit. Whether you are attempting your first half marathon, or using this event as a training run for the Virgin London Marathon, this race is for you! Entrance fee: £35 Minimum sponsorship: £300 Distance: 21.1km

BUPA London 10,000 May 2013 The Bupa London 10,000 is presented by the London Marathon and is run on the course used for the 2012 Olympic Marathons. Entrance fee: £35 Minimum sponsorship: £300 Distance: 10km

Limited places! Email vicki.smith@sarcoma.org.uk for more info!

www.sarcoma.org.uk


Fundraising

When the going gets tough... The economic downturn has made a significant impact across the sector. Smaller charities like ours are heavily reliant on voluntary donations, so please keep up the great work! Here is a snapshot of what you have been up to...

treatment. I was given the all-clear but in autumn last year, the cancer was found to have returned. I take medication and have regular checks and the disease is currently stable. I’ve lived my life in three-month chunks in between MRI scans. I have been a member of the Gap Players – an amateur dramatic group since the Eighties. I am so pleased that we raised more than £1,000 for cancer charities with five performances of Calendar Girls.

Cruise control We are a team of employees from Cruise.co.uk fundraising for Sarcoma UK, in memory of our colleague, Andrew Wheddon. So far, we’ve completed the BUPA Great Birmingham Run, held a head-shaving event, a ‘bake off’ cake sale, and grew moustaches for ‘Movember’! We originally vowed to get involved after learning of Andrew’s diagnosis. But sadly, just one week before the run, he passed away. We hope our achievements have made Drew proud. The run was incredibly exhausting, but the feeling as we crossed the finish line was worth it. Thoughts of Drew spurred us on all the way. Drew was a passionate supporter of Sarcoma UK. He took part in many fundraising events, visited the charity’s office in London, and even set up his own website to promote the cause, called ULegend. The amount raised by Andrew’s family, friends and colleagues currently stands at £21,000. Vicki Morrison

Fernwood Foxes My brother, Scott Whittaker, and his best friend, Graham Pelling, founded Fernwood Foxes Football Club. They www.sarcoma.org.uk

started out with six kids, a few cones and a bag of footballs. They began to train the kids on a weekly basis and entered them in to the local youth football league. Sadly in June 2009, Scott was diagnosed with Synovial sarcoma. This was a devastating blow for us all and it was hard to find the motivation to carry on. Scott passed away the following November at Nottingham City Hospital. I took over the chairman’s role straight away and set out to carry on what Scott had started. This year we have over 100 kids on our books and 17 members of staff. We are determined to carry on in Scott’s memory. Sarcoma UK has become our chosen charity and we split all our fundraising 50/50 with the club and the charity. From smashing our £5,000 target we want to now raise £10,000 and will keep fundraising to try and achieve this. Joe Whittaker

Calendar Girls I was diagnosed with sarcoma in 2009 and am currently undergoing

The team at Cruise.co.uk get ready, on their marks!

Being less well known, Sarcoma UK doesn’t receive as much attention as the more common cancer charities and therefore doesn’t get as much funding. I am so thrilled that our play has been able to raise enough money to give them a substantial donation. Chantelle Harding

Left to right: Rory, Harry and Jordan of the Scott Whittaker VII

Charity starts at home Friends and family of our new Patron, Richard Whitehead have also showed their commitment, recently raising over £2,500 for us. His mum, Geraldine Whitehead and local newsagent, Richard Manning, held a coffee morning and sold mini gold post boxes in their home town, Lowdham.

Email maya.wiles@ sarcoma.org.uk for any fundraising materials! Connect

• Sarcoma UK • Winter 1 2/13

7


Fundraising

Midlands Media Challenge It was a great night at the Macdonald Burlington Hotel, Birmingham, when the Press Club took on the cream of the region’s public relations consultants – going head-to-head in the second annual Midlands Media Challenge. The pub-style quiz raised £300 for Sarcoma UK with television presenters Bob Warman, Llewela Bailey and Marverine Cole all acting as quizmasters, together with Jean Martyn from Britain’s Got Talent, The Apprentice’s Nick Holtzerr and Peter Morgan, from BBC Radio WM breakfast show. It’s such a great way for PRs and journalists to mix informally and, for the second year running, it was one of the most fun and entertaining nights of the year. Bring on 2013! Nigel Pipkin

Press Club chairman Ed James, Marverine Cole, CIPR Midlands Chairman Nigel Pipkin, Peter Morgan, Llewela Bailey, Bob Warman and (front) Jean Martyn

The Bristol Ball As Head of Fundraising & Marketing for Sarcoma UK, I have the joy of meeting lots of inspiring people and the pleasure of being invited to some fantastic events. A very special ball was organised by Hazel Cresswell, held in memory of her husband Euan. I would like to invite you to share my experience of that wonderful evening. Held at Bristol Cathedral Choir School, an old and beautiful building with exposed brick work, you could almost feel lost in its overwhelming vastness. Upon entry you are greeted with a warm smile, as your coat is gently taken from you and you are guided upstairs to sample the canapés and indulge in a glass of bubbly. As you approach the pink winding staircase, have a browse over the extraordinary raffle prizes. These special prizes are hidden in little brown paper bags waiting for their new owners to untie their red ribbons – the attention to detail doesn’t go amiss. At the top of the stairs you are welcomed into a warm atmosphere with live music – three local boys who attend the school have kindly donated their time to entertain us. As you join the rest of the guests, stopping to admire the women in their ball dresses and the men in traditional black tie, you feel very much part of the Bristol community. A welcoming hug or hand shake, loud laughter and pockets of conversation that blur into comforting background noise – the Cathedral is filled with a charming ambience and every person here has come to support Hazel and remember Euan.

8

Ladies and gentleman, it is time to head downstairs and take your seat in the dimly lit hall for a three course dinner and auction. All the tables are full, wine is flowing and the courses are

Connect

• Sarcoma UK • Winter 1 2/13

served promptly. After the main course an old friend of Euan’s takes control by acting as the MC for the evening. It is time for the much awaited auction; you can bid for some fantastic prizes, including a 7 night stay in Barbados, the use of a BMW Z4 convertible for a weekend and tickets to the X-Factor; this definitely has the wow-factor! The atmosphere is intense as the Auctioneer picks up pace and hands are popping up everywhere, some half-heartedly, some reaching tall – nervous looks start to appear on husbands’ faces! There is a real buzz of excitement in the room and to top it off £11,000 is raised in the auction alone. It is very humbling to know what a huge difference that money will make to our charity. Sticky dessert plates are cleared and the smell of fresh coffee lures everyone back upstairs to kick up their heels and immerse themselves in the music. As you enter the ballroom, a vintage-clad singer with a blues band summons you in with old classic renditions to get everybody in the mood for a dance and a sing-a-long...it certainly works! Everybody is enjoying themselves, feet tapping and bodies making shapes across the dance floor. It has been a really successful night, a chance for old friends to catch up, raise much needed funds and an opportunity to raise awareness of sarcoma cancer. The real inspiration is Hazel as well as her friends for organising such a fantastic and well thought out event. The Bristol Ball raised £23,000 – not bad for people who have never organised a ball before! Thank you to the sponsors and everybody who attended and Hazel – a very special thank you for your time and dedication... you should be very proud of your fantastic achievement. Vicki Smith www.sarcoma.org.uk


Research

Man’s best friend Angiosarcomas are aggressive tumours of blood vessels. Whilst they are rare in humans, angiosarcomas are much more common in dogs – vets will see it in their surgeries when your GP may never see a case. Here, Dr Robin Young gives us an insight into his research project, funded by you, which uses tumour samples collected from dogs to improve the understanding of tumour biology Studies in angiosarcoma using canine tumours University of Sheffield Grant award: £17,500

huge amount more we need to learn about sarcomas, what causes them, how they develop, and how we can better treat patients with sarcoma. This makes sarcoma an interesting and exciting area of research.

What is your team like? What is the key aspect of your angiosarcoma project that shows its potential significance to patients? As with other sarcoma subtypes angiosarcomas are rare tumours. This makes systematic study of them a challenge. In contrast to humans angiosarcomas are very common in dogs. We hope that by studying tumour samples collected from dogs we will learn more about the biology of these tumours in humans. From that eventually we could improve treatments for patients in the future.

What is your scientific background? What attracted you to sarcoma as a research interest? I am a clinician training in oncology. I graduated from Edinburgh medical school in 1999 and entered medical oncology specialist training at Sheffield in 2006. My oncology training covers the treatment of all cancers, however in the future I hope to specialise in sarcoma. In March 2012 I returned to the clinic, having spent three years in the laboratory at the University of Sheffield as a research fellow studying novel treatments for angiosarcoma. Current scientific techniques enable cancers to be studied in unprecedented detail, and this has led to successes, such as the treatments now used for patients with GIST. Despite this, there is still a www.sarcoma.org.uk

Research is very much a team effort. My research fellowship supervisors, Professors Penella Woll and Nicola Brown, are coinvestigators on this project. Due to clinical commitments the day-today research is being carried out by Sue Higham, a senior laboratory technician, and we hope to have an MSc student in place next year. As sarcomas are rare, sarcoma research is often a collaborative venture. Our Sarcoma UK funded research relies on collaborations with the Animal Health Trust (UK) and the Van Andel Research Institute (USA). The lab itself is often quite a busy place with a number of different research projects going on. Inevitability there can be a fair bit of background noise – people talking, the buzz from laboratory equipment etc and, if I’ve got anything to do with it, Test Match Special on the radio!

Any cancer research has peaks and troughs – sometimes a bit of a slog, sometimes every exciting. What are you happiest about so far with your angiosarcoma project? And what has been more disappointing?

Dr Robin Young

get things going and that can be quite frustrating, but it is very exciting that the project is now underway and I am looking forward to what we discover through this project.

How much patient contact do you have and how does this inform your plans for your lab based research in angiosarcoma?

“Our research relies on collaborations with the Animal Health Trust and the Van Andel Research Institute.”

We only really started work on this project in September, so it’s too early to talk about results. Inevitability it takes a little while to

As a clinician I have a lot of patient contact and whilst the research itself is interesting ultimately the end goal is to improve patient care. Hopefully the results from our laboratory studies will enable us to develop a clinical trial of a new treatment for patients with angiosarcoma. An intrinsic component of any such trial would include collecting patient samples – biopsies and blood samples – for analysis in the laboratory. These studies would further our understanding of tumour biology, and help to inform our development of the next research project.

Connect

• Sarcoma UK • Winter 1 2/13

9


Research

Sarcoma UK funding pays off A Sarcoma UK-funded research team in Sheffield (awarded £75,790 in 2010 to research DNA repair genes and cell cycle regulators as a predisposing cause of sarcomas) have adapted a technique which will allow them to study archived tumour samples in a way they could not be studied previously. Much larger number of samples are now available for use in this project, increasing the potential to further sarcoma knowledge worldwide. Researcher Karen Sisley gives us the details…

L

ittle is known about the genetic background of most sarcomas, but for a few types of sarcoma there are specific genetic alterations that are of clinical value. We had done some initial investigations which suggested that even sarcomas with high levels of genetic instability, and considered to have nonspecific changes, may actually have consistent alterations that could be clinically relevant.  The project was designed to look for specific and characteristic changes in a wide range of sarcoma subtypes, and also to see if any changes were common to all sarcomas.

10

As we wanted to gain the most complete overall impression of the genetic changes in sarcoma subtypes, we used a technique called array comparative genomic hybridization (array CGH), that looks at the losses and gains of all chromosomes that can occur in cancer. As some sarcoma subtypes are very rare it is often difficult to get large enough numbers to study. To gain sufficient samples of these rare subtypes we needed to analyse material from archival stores of sarcomas.  These samples have been preserved using formalin, which is how classically all samples from all tumours are stored.  Unfortunately the process of formalin fixation causes problems for genetic studies, as the preservation interferes with DNA. The array CGH technique was therefore previously considered not to be suitable for use on formalin fixed preserved material, and as such could not be used to study archival stores of formalin fixed sarcomas.  We set out to address this issue, and Azeez Salawu working with Connect

• Sarcoma UK • Winter 1 2/13

Honorary President, Roger Wilson meets the team in Sheffield

Aliya Ul-Hassan and Dave Hammond were able to successfully adapt the technique, so that array CGH can now be reliably used to analyse formalin preserved tumours. Worldwide most samples taken from tumours are stored as formalin fixed samples, and most pathology laboratories will have samples stored dating back decades. There are therefore large numbers of tumours in these preserved banks that can be used for research purposes. Until now however these samples were not suitable for array CGH. The methodological development by Salawu et al therefore has

Sarcoma UK has been formally accepted as a member of the Association of Medical Research Charities (AMRC). The AMRC is a membership organisation of the leading medical and health research charities in the UK, set up to support members to fund research of the highest quality. Sarcoma UK becomes its 125 member charity.

international implications, with the possibility for all archival samples of cancers to now be analysed using array CGH. With ethical approval we have already been able to analyse samples approaching 20 years old, but it may be possible to go even further back into the archives. The potential to increase the number of tumours for research worldwide is therefore highly significant. The development of this protocol is particularly relevant to sarcomas, as the use of archival samples will increase the number of tumours that are available and will help in identifying the genetic changes in these rare subtypes. The immediate plan will be to search back through the archives of sarcomas, some of which have been stored for more than 20 years, and see if we can expand our series of the rare subtypes for characterization. Our next steps are to investigate a candidate gene we have identified in one such subset of sarcomas using this methodology. Similar studies are now possible for any centre investigating sarcomas, so the chance exists now to increase our genetic understanding to the background of these rare and previously difficult to characterize sarcomas. 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

SCART

Selumetinib in Kaposi’s sarcoma. Phase I/II study of Selumetinib (AZD6244) with anti-retroviral therapy in AIDS-associated Kaposi’s sarcoma

Open

SOFI VE BASKET (NCRN396)

Sarcoma Optimum Follow-up Investigation. An observational study on different follow-up protocols. An open-label, phase II study of vemurafenib in patients with BRAF V600 mutation-positive cancers – including both soft tissue and bone sarcomas

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 + VIT-0910

Phase II randomised study of vincristine and irinotecan plus/minus temozolomide in advanced rhabdomyosarcoma patients aged <50 years

Open

Open 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 EURO-EWING 99

Multi-modal therapies treating patients with Ewing’s sarcoma

Open

EURO-EWING 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

Connect

• Sarcoma UK • Winter 1 2/13

11


Support & information

Support and information Preview our brand new guide for the newly diagnosed Understanding sarcoma – a new patient’s guide Last year, The National Cancer Patient Experience Survey (NCPES) published a report to drive improvement for cancer patients. 2451 sarcoma cancer patients responded. We learnt that the explanation of sarcoma is one thing, written information and support is another. The survey showed that only 50% of sarcoma patients were given written, easy understandable information about their diagnosis; this was the lowest of all the other cancer groups. In 2010, we also carried out our own ‘Information and Support’ survey, to gain feedback from sarcoma patients, carers, partners and family members. From the 107 people who took part; two thirds felt that their support needs had not been fully met. As the main charity in the UK dealing with all types of sarcoma, we have responded to these research findings, focusing on our Information and Support. Our brand new Understanding sarcoma – a new patient’s guide (page 13) is the core booklet to help patients gain knowledge of this rare cancer and introduce them to the medical team who “Only 50% will look after them. of sarcoma patients It explains what sarcoma is, how it were given written, is diagnosed and easily understandable the treatment information options available. It clearly signposts about their where you can go diagnosis.” for support and has space available to keep your own personal diagnosis information and details of your hospital appointments.

12

The booklet will be approved by our Information Review Panel, made Connect

• Sarcoma UK • Winter 1 2/13

up of both sarcoma specialist nurses and patients nationally. We will also apply for the Information Standard Accreditation (ISA) quality mark. The guide will be available early March 2013. You can pre-order your free copy on 020 7250 8271 or info@sarcoma.org.uk.

Lack of specialist support in Cornwall The Royal Cornwall Hospital hosted a focus group on Friday 16th November to discuss the limited access to support that people diagnosed with sarcoma are facing in the area. The meeting, organised by Liz Ridgway, Sarcoma Clinical Nurse Specialist, was attended by newly diagnosed patients, carers and family members from the local areas. There were presentations by Mr Morris, Lead Sarcoma Surgeon at Derriford Hospital, Plymouth, who gave an introduction to sarcoma, and our own

Claire Kelleher, Head of Information and Support, who gave an update on the charity’s current activities and highlighted the information and support initiatives that can help patients living in Cornwall. The meeting highlighted the lack of support patients have in the area. Local patients are currently limited to having access to a sarcoma nurse upon diagnosis and at follow up appointments. Patients who have been discharged miss out on this support. Liz Ridgway, Sarcoma Nurse Specialist, said: “Patients undergoing chemotherapy and radiotherapy do not have local access to a sarcoma nurse and may often feel isolated. Support should be available for the Cornish sarcoma patients at all stages of their pathway.” The support of a sarcoma nurse is vital to patients; they provide useful information and offer emotional and practical support that can be a lifeline to patients.

We’re here, so you can be there Join the new online support group for sarcoma patients and carers. A new sarcoma account is available on GroupSpaces.com. This is an online community which gives members an opportunity to communicate with anyone affected by sarcoma. You can speak to others in a similar situation and offer vital comfort to others at difficult times.

Log on to www.groupspaces.com/sarcoma and join the sarcoma community! www.sarcoma.org.uk


Support & information Research

Understanding Sarcoma – a new patient’s guide Symbols ~ ~ ~ to help you ~ ~ source more information on our website

The most common types of sarcoma

Bone sarcomas

Soft tissue sarcomas

~ ~ ~ ~ ~ ~ ~

What is Sarcoma?

bone, Sarcomas are rare cancers that develop in the muscle, and nerves, cartilage, tendons, blood vessels and the fatty fibrous tissues.

types of sarcoma that fall “There are about There are about 70 different 70 different types three main types: Soft tissue cancers of sarcoma.”

Angiosarcoma Malignant peripheral nerve sheath tumour (MPNST) Synovial Myxofibrosarcoma Rhabdomyosarcoma Desmoid tumour Some Ewing’s sarcomas

How is it diagnosed?

Find out more about sarcoma sub-types on our website

of The earlier sarcoma is diagnosed the better the chances a lump successful treatment. Sarcomas are usually found because during an appears on the leg, arm or trunk. They can also be found operation. routine investigation of other symptoms or during a

well as They also appear in the stomach and intestines as the behind the abdomen (retroperitoneal sarcoma) and female reproductive system (gynae sarcomas). each year About 3200 new cases of sarcoma are diagnosed in in the UK. Some types of sarcoma are more common rcoma, children and young people, such as Rhabdomyosa such as types, Other . Osteosarcoma and sarcoma Ewings common Myxofibrosarcoma and Chondrosarcoma are more in older people.

A specialist doctor will diagnose sarcoma through tests including:

a series of

your– looking and feeling any lump Understanding examination ~ Clinical scan – taking pictures of inside the body using diagnosis~ Aultra-sound, X-ray, CT, EUS or MRI – taking and testing a tissue sample ~ AA biopsy Identifying the stage and - to investigate primary bone sarcomas scan bone ~ Grades of cancer grade of a cancer means

e 3 your doctor can advise The newly diagn osed sarcoma patient – a guid ~ slow-growing, look www.sarcoma.org .uk Low-grade – The cancer cells are on the best course of quite similar to normal cells, are less aggressive, and treatment for you, it also are less likely to spread quickly. describes the cancer in a Intermediate-grade – A middle grade. common language which High-grade – The cancer cells are fast growing, look comes in useful when your very abnormal, are more aggressive and are more doctor is discussing your likely to spread quickly case with other doctors or health professionals. The stage of cancer is measured by how much it has grown or What spread which can be seen on the results of your tests and stage is my scans. The results from a biopsy can tell what grade the cancer at?

~

www.sarcoma.org .uk

2 ~ The newly diagn osed sarcoma patient – a guid e

~ ~

ity

tissue cancer char

Appointment diary

:45 14/1/13 14:55

You can keep track Date

booklet layout.indd

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

intestines inside They can affect almost any part of the body, on the legs or the outside. Sarcomas commonly affect the arms, and trunk.

What type of sarcoma do I have?

Newly diagnosed

~ ~ ~ ~ ~

~ Primary bone cancers ~ Gastro-intestinal stromal tumours or GIST ~ – a soft tissue sarcoma found in the stomach and

Und ers tanding sarcoma: uid e a new patient’s g

The bone & soft

into

Leiomyosarcoma Fibromyxosarcoma Liposarcoma Gastrointestinal stromal tumour (GIST) Kaposi’s sarcoma (KS)

1

of your hospital appoin

Hospital

tments by recording

Appointment/Treatm

ent

them in the space below.

cancer is.

Space to keep details of your hospital appointments

Has my cancer spread to another part of my body? If so, where?

What treatment is available?

Will the stage of my cancer affect my treatment?

The type of treatment you receive will depend on the stage and grade of your cancer and the type of sarcoma you have. Your case will be managed by a team of experts from a wide range of health care professions called a multidisciplinary team or MDT. Your MDT will discuss your case and your doctor or nurse will talk you through your options so you are

The newly diagn osed sarcoma patient – a guid e

www.sarcoma.org.uk

~5

mple,

Oncolog

Surname Firs t name Email phone

to treatment this space ed in your ow. You can use l be involv s listed bel ers who wil professional team memb the health not see all You may

Clinical Nu

rse Speci

Direct tele Notes

s when for patient contact a patient – a guid t ofsarcom e

16 ~ The) newly diagn osed

alist (CNS

ice, and acts

port and adv Offers sup . a concern they have

diograph

ortant poin

as an imp

Newly diagnosed

ist

17/1/13 11:11:25

in can specialises A doctor who iotherapy. rapy or rad chemothe

ma multi- T) My sarco D ry team (M disciplina keep the contact details of you. r

Descriptions of the healthcare professionals who will be treating you

for exa n surgery,5 er thalayout.indd Newly diagnosed nts othbooklet cer treatme

er

h as x-rays,

suc Ra arcoma www.s s images, .org.uk A doctor who

booklet layout.in

take

dd 16

Keep in Your Personal Guide to Sarcoma folder

and may also

erapy as a

give radioth

treatment.

Surname

17/1/13 11:09:06

Firs t name

Surname

Email

Firs t name

phone

Direct tele

Email phone

Notes

Direct tele Notes

Physioth Surgeon

cer through

Treats can

erapis t

Advises on

s. l of tumour

exercises

tion after

h rehabilita

to help wit

surgery.

Surname

the remova

Firs t name Surname

Email phone

Direct tele

Firs t name

Notes

Email phone

Direct tele Notes

osed ly diag n The new ww w.s arco ww w.s arco

12 ~ The new

osed ly diag n

a guid e pati ent –

~ 13

14/1/13

14:54:19

ma. org .uk

a guid e pati ent –

3 t.indd 12-1

let layou

nosed book

Newly diag

sarc oma

sarc oma

ma. org .uk

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

Connect

• Sarcoma UK • Winter 1 2/13

13


News

News round-up

F

ibroblastic sarcomas develop from the fibrous connective tissue within the body and can occur at any anatomical site. The four different fibroblastic sub-types are malignant fibrous histiocytoma (MFH), dermatofibrosarcoma, fibrosarcoma and myxofibrosarcoma.

The latest Sarcoma UK related news Expanding the team

The Scottish Sarcoma Network (SSN) held a special Autumn Education Meeting in September 2012 in Glasgow celebrating the historic 50th anniversary of the Scottish Bone Tumour Registry (SBTR). Almost 60 delegates from professional groups in the sarcoma field across Scotland heard about the importance of the Registry and its archives of x-rays and pathological slides linked to patient histories. The meeting heard how technology is presenting exciting opportunities for the storage of the Registry data in the shape of an iMac-based digital solution which can store entire radiological scans rather than selected images, as well as case notes. Jeff White Lead sarcoma clinician, Scotland

Claire Kelleher

Claire is developing all our patient information materials and has created our Understanding sarcoma – a new patient’s guide, which you can preview on page 13. Claire likes The Guardian Weekend quiz, badge making and drinking copious amounts of tea whilst reading dystopian science fiction novels.

Leigh lives in Reading with her husband and their four children and has worked in various administrative support positions. Of her role as a Trustee, Leigh says “Sarcoma UK has been a huge support to our family and it is a great honour to have been asked to become a Trustee of the charity. I am looking forward to continue supporting such an active and progressive organisation and to help support others facing a similar situation to our own.”

14

We are excited to have you both on board! Connect

• Sarcoma UK • Winter 1 2/13

Sarcoma UK’s Annual Review

Leigh Hibberdine

Log on to www.sarcoma.org.uk and have a peek at our first ever online Annual Review, 2011/12. It shows how we spent your money to achieve our charitable objectives and help even more people affected by sarcoma. Research

Date for your diary

To establ ish hig h quality ourselves as a funder of scientific research thr the develo oug h pment and launch of a new res earch grants programm We developed e.

Sarcoma Awareness Week 17-23 June 2013

and implement manageme ed a new grant nt system, s published our Strategy and new Resea set up a forma rch Committee l Research Advisory of leading sarcoma clinici ans. Your mone y enabled us to appro research grant ve four new s totalling £100, years. Detai 000 over two ls are given opposite.

Grants are awarded to project s of the hig hes t qua lity September ’s Call for Pro pos als attracte d 14 applica tions What’s nex

t?

Increase our ~ resear impact and influe

nce in the sarco ch field throu ma gh the expan programme sion of our and improved grants developme communica nts in sarco tion of

ma scientific research ~ Raise more funds for resear ch Sarcoma

Annual Review

247x190.indd

1

Accounts we achieved a total Given the uncertain economic climate, in both infrastructure and income of £408,221. We have invested contributed to raising charitable activity which has significantly helping to raise much the profile of the charity, and thereby was £414k, including £100k needed funds. Our charitable spend grants. awarded for research from reserves and funded was £6k A small deficit of just under the board of trustees at the had been anticipated and approved by start of the year.

Income

fundraising efforts we Thanks to your generous donations and up of unrestricted raised £402,201 which was mainly made committed to fundraising. donations from individuals and groups UK and we are so grateful This marks a milestone for Sarcoma this without for your loyalty; we could not have achieved your support.

Expenditure

objectives: to fund We spent funds to achieve our charity’s and raise awareness of research, provide information and support staff and resources, sarcoma. We also invested in our professional and carers. to maximise our positive impact on patients the income and expenditure for Sarcoma The summary financial information shows approved full financial statements which were UK. The information is taken from the of the In order to gain a full understanding by the trustees on 18 September 2012. report financial statements, trustees’ annual financial affairs of the charity, the full be consulted. Copies can be obtained and independent examiner’s report should from Sarcoma UK. Signed on behalf of the trustees Chairman Peter Jay,

Instit ute of Canc Dr Janet Shipl er Research ey, Dr Anas £25,000 tasia Cons tantinidou Genomic and differentia expression profiling ted and dedif of recurrent well ferentiated liposarcom University as College Londo and the Roya n Dr Beatrice l Marsden Hospital Seddon, Profe £40,000 ssor Ian Judso n The Internatio nal a global multi Sarcoma Kindred Study: -site prosp ective cance r genetics study University of Sheffield Dr Robin Youn g £17,500 Studies in angiosarco ma using canin e tumours University of Oxford Professor Nick Athan £17,500 asou Analysis of of resorption osteolysis in Ewing ’s sarcoma inhibitors and the effec on tumour t growth We also conti totalling almonued to fund two previ ous research st £90,000: grants University of Sheffield Dr Karen Sisley, Dr Abdulazee Dr Martin z Salawu, Robinson Defects of DNA repai r genes and predisposi cell cycle ng cause of regulators sarcomas as a Royal Mars den Dr Julia Riley Hospital, London A prospective , Dr Claire Smith, Profe observatio ssor Ian Judso quality of nal study n life to metastatic of patients with locall evaluate the soft tissue y advanced sarcoma and

Research

Leigh Hibberdine Welcome to Leigh, our newly appointed Trustee. Leigh’s involvement with Sarcoma UK began following her daughter’s diagnosis in 2009 with Paediatric Wild-type GIST. Since then, along with family members & friends “Team GIST” has become an active supporter of the charity, working hard to raise awareness of sarcoma by hosting and supporting a variety of fundraising events.

Income £408,221 Donated services £3,325

7/11/12

11:40:48

Investment income £2,695 Grants from trusts and pharmaceutical companies £30,000 General donations including Gift Aid £372,201

Expenditure £414,194

Accounts

Claire Kelleher We’d like to introduce Claire Kelleher, Head of Information & Support, who joins us from the Muscular Dystrophy Campaign where she produced information materials and developed a range of support initiatives.

Across the border

Cost of generating voluntary income £73,744

1

Changes in the classification of fibroblastic sarcomas mean that different sub-types show significantly different incidence patterns across the 25-year period 1985-2009. Historically MFH was once one of the most commonly diagnosed types of soft tissue sarcoma. However, this term is now very rarely used and most of the tumours once diagnosed as MFH are now assigned to a more specific morphology sub-type. Thus, whereas in 1985-1989, MFH accounted for 61% of all fibromatous sarcomas, and myxofibrosarcoma for less than 1%, in 2005-2009, MFH accounted for 21% and myxofibrosarcoma 26% (Figure 1). In the latter period, dermatofibrosarcoma was the most common fibroblastic sarcoma diagnosed, accounting for 40% of cases. Fibroblastic sarcomas are exceptionally rare in people under the age of 20 and are most commonly diagnosed in males 55-84 years of age (Figure 2). Fibroblastic sarcoma age specific incidence rates gradually increase with advancing age. As age specific incidence rates increase, the difference between males and females becomes greater, until, in patients over the age of 75, male rates are more than twice the female rates.

Governance costs £38,887 Research £138,638 Awareness and education £80,185 Information and support £82,740

7/11/12 11:42:29 Sarcoma Annual Review 297x190.indd

Between 1985 and 2009, 8,700 fibroblastic sarcomas were diagnosed in England. Of these, 42% were MFH, 31% dermatofibrosarcoma, 16% fibrosarcoma and 11% myxofibrosarcoma. Fibroblastic sarcoma incidence rates do not vary significantly between males and females, with age standardised rates fluctuating around 6 cases per million population.

Fibroblastic sarcomas can arise at any anatomical site, but the distribution varies with sub-type www.sarcoma.org.uk


Statistics

Fibroblastic sarcomas

Key facts • 8,700 fibroblastic sarcomas

The West Midlands Intelligence Unit continues its articles for Connect, with a specific focus on fibroblastic sarcomas head, face and neck (8%) and the gynaecological organs (8%).

(Figure 3). Dermatofibrosarcomas are almost exclusively confined to the skin (96%). Myxofibrosarcomas, MFH and fibrosarcomas most commonly arise in the limbs (67%, 45% and 28% respectively). Myxofibrosarcomas also occur in the connective tissues of the trunk (18%) and the head, face and neck (5%), MFH in the connective tissues of the trunk (17%) and the skin (10%), and fibrosarcomas in the connective tissues of the trunk (22%), the organs within the trunk (9%), the

5-year relative survival rates for fibroblastic sarcomas have increased significantly over the last 20 years, from 60% and 57% for males and females diagnosed in 1985-89 to 77% and 82% for patients diagnosed in 2000-04 (Figure 4). The overall message is thus a positive one with 5-year relative survival rates increasing by 20% over the 20-year period 1985-2004.

Figure 1: Variation in fibroblastic sarcoma sub-types with year of diagnosis (England: 1985-2009)

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

600

100

Males

Females

500

80

Number of cases

Fibromatous sarcomas diagnosed (%)

diagnosed in England 1985-2009 • Age standardised incidence rate: 6.7 per million in 2007-2009 • Number diagnosed in 2008 and 2009: 378 and 400 • Most common sites of diagnosis: the limbs, the skin (primarily due to dermatofibrosarcoma), and connective tissue of the trunk • Sub-types: – Malignant fibrous histiocytoma (MFH): 3,673 diagnosed 1985-2009 – Dermatofibrosarcoma: 2,668 diagnosed 1985-2009 – Fibrosarcoma: 1,380 diagnosed 1985-2009 – Myxofibrosarcoma: 979 diagnosed 1985-2009

60 40 20

400 300 200 100

0 85-89

0

05-09 Myxofibrosarcoma Malignant fibrous histiocytoma

Figure 3: Fibroblastic sarcoma variants diagnosed in the most common anatomical sites (England: 1985–2009)

Figure 4: Fibroblastic sarcoma 5-year survival rates sexing males and females (England: 1985-2004)

100

20

40

302

359 324

11856 104 145 60

80

100

Diagnosed (%) Other sites Male genetalia Gynaecological organs Skin Organs within trunk Breast GI tract Connective tissue of trunk Retroperitoneum Head, face and neck Limbs www.sarcoma.org.uk

60 40 20

Males

Females

0 99-03

0

111 67

607

80

97-01

393

Fibrosarcoma

364

45

95-99

1655

177

93-97

Malignant fibrous histiocytoma

47

91-95

653

89-93

Myxofibrosarcoa

Relative survival (%)

2549

87-91

Dermatofibrosarcoma

Age group

85-89

Dermatofibrosarcoma Fibrosarcoma

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+

Year of diagnosis

Year of diagnosis Connect

• Sarcoma UK • Winter 1 2/13

15


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

Online

Donate www.sarcoma.org.uk

By bank

Make 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

We rely solely on your voluntary By text donations Donate by text message to fund vital sarcoma research, Text SAUK00 £10 to 70070 Minimum donations £1 and information maximum donation is £10. Gift Aid can also and support be added. 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, Lindsey Bennister and 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.

Profile for Sarcoma UK

Sarcoma UK: Connect, Winter 2012  

Sarcoma UK: Connect, Winter 2012  

Profile for sarcomauk