marathon men - sarcoma uk

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Spring 20 14The bone & soft tissue cancer charity

Marathon men Celebrating a 40 year friendship.

It’s mind over matter for both Dave & Neill.

Team SarcomaMeet our Virgin London Marathon runners

Gynaecological sarcomas Insights into one of the 100 sub-types of sarcoma from Public Health England106 15Awareness Week

Order your ‘On the Ball’ GP awareness pack!

Connect • Sarcoma UK • Spring 20 14 www.sarcoma.org.uk

From the Chief Executive

2

Earlier diagnosis of sarcoma is key to improving the lives of people

affected by sarcoma, and ultimately saving lives. Patients and families tell us of repeated visits to a GP before a visible lump that is increasing in size – sometimes reaching the size of a baked bean tin – is treated as suspicious and referred for investigation and treatment. The sarcoma specialist healthcare professionals tell us of their frustration in not seeing people with sarcoma earlier, when it is smaller and easier to treat successfully.

Sarcoma Awareness Week 2014 sees the launch of Sarcoma UK’s first ever national Campaign, ‘On the Ball’ for sarcoma, focusing on this vital issue of early diagnosis.

In 2012, our pilot ‘Golf Ball Campaign’ in Birmingham identified that GPs liked the idea of a golf ball as a handy prompt for when to refer lumps. GPs told us they wanted more information about the signs and symptoms of sarcoma and what to do next. Information sent in the post rarely reaches GPs, and they are inundated with emails. Our ‘On the Ball’ packs provide GPs with the information they need but we need you to take this information to them! (See page 10)

I hope that you will join Sarcoma UK and the sarcoma community during Awareness Week and help us make a real impact on early diagnosis of sarcoma. I’m booked into see my GP already!

Thanks for all your continued support!

Best wishes

Sarcoma UK’s key messagesSarcoma UK is the only charity in the UK focusing on all types of sarcoma.

Our missionTo increase knowledge and awareness of sarcoma through ground-breaking programmes that inspire involvement and transform the landscape for everyone affected by sarcoma.

What we do• We initiate change to raise sarcoma awareness and improve

standards of treatment and care

• We seek answers through research

• We provide support & information for the sarcoma community

Our impactAwareness • Connect (Sarcoma UK’s publication) is sent out three times a

year and distributed to a database of 6000

• Sarcoma Voices is our active sarcoma community – see how you can help and “Speak out!” www.sarcoma.org.uk/voices

Research • We have funded over £455,000 of scientific and medical research

• Grants are awarded by our Research Advisory Committee to leading scientists, researchers and clinicians in centres of excellence around the UK

Support & information• We offer support to patients and carers online

www.sarcoma.org.uk/help. Subscribers chat to each other via email and gain valuable support from other patients in the same situation

• We provide support to 12 local sarcoma groups around the UK, and help new groups set up

• We are active on Facebook www.facebook.com/uk.sarcoma and Twitter @Sarcoma_UK where our sarcoma community communicates with each other in an online social environment

• Our patient information is rated highly amongst patients and healthcare professionals. 50,000 About Sarcoma UK leaflets are sent out to individuals and hospitals each year

• We have Personal Guides and booklets such as Understanding sarcoma: a new patient’s guide to help you through your diagnosis

What is sarcoma?• Sarcomas are rare cancers that develop in the muscle, bone, nerves,

cartilage, tendons, blood vessels and the fatty and fibrous tissues

• Sarcomas fall into three broad categories:– Soft tissue cancers– Primary bone cancers– Gastro-intestinal stromal tumours (a type of soft

tissue sarcoma found in the stomach and intestines commonly known as GIST)

• There are around 100 different sub-types of sarcoma

• About 3,800 new cases of sarcoma are diagnosed each year in the UK, which makes up approximately 1% of all cancer diagnoses:

– 3,330 people are diagnosed with a soft tissue sarcoma (including GIST)

– 500 people are diagnosed with a bone sarcoma

Lindsey Bennister Chief Executive

• The most common sub-types are:Soft tissue sarcomasLeiomyosarcomaFibroblastic sarcomaLiposarcomaGastrointestinal stromal tumour (GIST)Kaposi’s sarcoma (KS)AngiosarcomaMalignant peripheral nerve sheath tumour (MPNST)Synovial sarcomaRhabdomyosarcoma

Bone sarcomasChondrosarcomaOsteosarcomaEwing’s sarcomaChordoma

The current sarcoma landscape• 10 people every day are diagnosed with sarcoma in the UK

• There are around 13,000 people living with sarcoma in the UK

• Sarcomas make up 15% of all childhood cancers (0-14 years)

• Sarcomas make up 11% of all cancer diagnoses in teenagers and young people (15-24 years)

• In Scotland, just under 300 new cases of sarcoma are diagnosed each year

• In Northern Ireland, 100 new cases of sarcoma are diagnosed each year

www.sarcoma.org.uk Connect • Sarcoma UK • Spring 20 14

Mobile network works with employees to raise £20,000 Catherine Burls tells of first being diagnosed with sarcoma in 2012, and how her colleagues raised such a

huge amount of money for Sarcoma UK.

W e saw in the new year of 2012 with lots of fun and parties, but three days

later I collapsed at work. My blood pressure was far too low and I’d been losing blood. After admission and tests, I was told it was an ulcer in my stomach and was packed off home and told to rest. Three months on, I felt the same: tired, bloated and faint. I went to my GP and insisted on a scan. This time I was told it looked like a gastro-intestinal stromal tumour (a type of soft tissue sarcoma found in the stomach and intestines commonly known as GIST). I naively googled GIST, and a handful of sites informed me about sarcomas, but I still understood little about sarcoma. When I read that it was rare, I ruled out it would affect me.

After several appointments, I finally received a date to remove my GIST, which was in July 2012. I was constantly worried that it was cancerous, and all conversations pointed to a benign GIST.

Surgery went well; I had over half my stomach removed. I remember joking that it was cheaper than weight watchers. However, I stopped joking when my husband told me that, whilst I was in intensive care, the surgeon had revealed that it was very nasty, and much larger than first presumed: possibly a leiomyosarcoma. My heart sank, I was glad it was out, but what if my sarcoma had spread?

After a week in hospital, I was trying to go about everything at home as normal. 100mph, as per usual, but I soon realised my body had been through major surgery and fear kicked in as my tumour was sent for histology. I started to research sarcomas, whilst I awaited the histology and found Sarcoma UK’s website. I read every single link and article!

I felt so much better informed, and when I got the news it had been a leiomyosarcoma (in late October), I was upset – but felt in control. My surgeon referred me to the Royal Marsden Hospital, and since then I’ve been cared for by some remarkable people, who’ve kept me posted and updated every step of the way.

I returned to my job exactly one year on from my collapse and I got stronger and stronger throughout

2013. My colleagues were amazing and I was fortunate enough to be fully supported all the way through my journey. The company I work for, [mobile network] 3, gives employees the chance to apply for ‘The Charity Challenge’, a scheme that matches employee fundraising, pound for pound.

Before I knew it, we were accepted and were drafting plans. We contacted Vicki and the team at Sarcoma UK and soon began raising money. We took on three challenges: a 10K run, a national bake-off and a sponsored ‘Wear your Christmas Jumper Day’.

My colleagues were amazing – and still are! Their support and passion helped me get through every CT scan, MRI, and news of results every three

months in 2013.

I still remain all clear and feel so positive.

I’m an enthusiastic ambassador of Sarcoma UK, telling as many people as possible about sarcoma. I try to share my story with others, to tell how taking control and being persistent with care can be so positive! I now know to always listen to your body and react accordingly.

I hope to stay free of sarcoma forever.

(l - r) Rea and Catherine

Tantalizing treats from

The Great Burls

Bake-off

Catherine’s colleagues at ‘3’ HQ

Personal experience

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Connect • Sarcoma UK • Spring 20 14 www.sarcoma.org.uk4

Fundraising

Nobody does it better Friends and family celebrated the 50-year career of legendary trumpet player Derek Watkins, whose dazzling CV

featured the soundtrack to every James Bond film, supported by a line-up of fellow international musicians.

It was set to be a special night, as an hour before start time the foyer was thronged with Derek’s family,

friends and musicians from all corners of the industry. All present to honour both the man and the musician. The feeling of anticipation in the air was palpable.

On Sunday 2 March, a memorial concert took place at Fairfield Halls, in Croydon, celebrating the talent of trumpet legend Derek Watkins. The night looked back over his extensive career, paying tribute to his reputation as one of the best all-round trumpet players in the world. Fittingly, it was Derek’s birthday!

The Super C Big Band comprised some of the finest session musicians in Britain; they played a repertoire of Derek’s illustrious career set to backing footage of Derek’s musical life. Special guests jetted in from all over the world to perform at the concert, including trumpet maestro, Chuck Findley from Los Angeles, and singer Madeline Bell, who lives in Spain.

Super C Big Band Co-Leader, Simon Gardner, said: “Among professional musicians, Derek has been known as one of the finest lead trumpet players of his generation. The Memorial Concert was our way of paying tribute to his mastery of many genres. He was a huge inspiration to all, and his style has influenced brass players all over the world.”

The evening started paying homage to Derek’s brass band beginnings, with the Spring Gardens Brass Band from Reading opening the show. Then music Derek played from his time with bands

such as the Jack Sharpe Orchestra,

Clarke/Boland Big Band, and from his tours in Europe with Benny Goodman and Kenny Wheeler. More followed from his time in the US when he played with Earth, Wind & Fire.

The audience were treated to whole segments dedicated to Derek’s most renowned work, including the James Last Orchestra and James Bond films. David Arnold gave

a speech highlighting Derek’s contribution to the mainstream

success of these films.

Chuck Findley’s emotionally charged performance of Little Girl Blue (a tribute to Derek’s recordings with the Metropole Orchestra) followed by

Madeline Bell’s spectacular rendition of Joni Mitchell’s Both Sides Now left barely a dry eye in the house.

There was an impressive finale paying tribute to Nelson’s Column Big Band with Derek as featured soloist on We’ve Only Just Begun (courtesy of the magic of modern

technology), all backed by the Super C Big Band live on stage.

The audience left the concert dazzled by the musicianship and humbled by such affection shown toward Derek.

A night that showcased legendary talent and celebrated a fantastic career, it was most certainly a night to remember.

A DVD and album will be produced with all profits going

to Sarcoma UK. www.derekwatkins.co.uk

Derek playing at a James Last

concert in the 70s, and more

recently, at the premiere of

Skyfall

Left to right: Rhashan Stone,

Lindsey Bennister and Wendy

Watkins speak at the concert

The concert at Fairfield Halls,

Croydon

Cheryl Watkins and Derek at the

2012 Brighton Marathon

Event images: Chris H

ughes and Matthew

Wall

www.sarcoma.org.uk Connect • Sarcoma UK • Spring 20 14 5

Fundraising

Woodwind, brass, strings and cake!Check out what our supporters have been up to, from dumbbells to dancing!

Left: Two of Katrina Thomson’s fundraising events

Two years ago, my dad, Kenny, was diagnosed with rhabdomyosarcoma. To show our appreciation and support for all the hard work provided by healthcare professionals, we held three fundraising events to say thank you: a sponsored walk, a coffee morning, and a sponsored 100km cycle relay – my dad even took part. The support and generosity of people has been simply incredible. We raised £5,300, which was split between Sarcoma UK and the Childhood Eye Cancer Trust. We really had no idea we’d raise such a huge figure. Katrina Thomson

“As soon as she told me, I knew that Sarcoma UK was the charity.”After hearing about a friend’s daughter’s diagnosis with osteosarcoma, I organised a fitness day at Fitness First, Leyton Mills. Holding a fitness class on the hour, every hour, for 24 hours! Not only did we raise over £1,250, there was a delicious Sarcoma UK cake for after their workouts! Julian Baker

“The support we received was truly overwhelming.”

“We chose the beginning of this new hopeful year to come together with our friends and celebrate.”After my sister, Amy, was diagnosed in 2010 with an epithelioid sarcoma in her arm things have taken a

positive turn. I organised a full professional

symphony orchestra made up of friends and colleagues. We started the year in the best way possible: a concert in special honour

of Amy. The concert raised over £13,000

for Sarcoma UK and we even got a standing ovation!

Nicole Wilson

“I would like to raise as much money for Sarcoma UK as possible for the charity to carry on its research.”For the second year in a row, I organised an amazing party in my hometown, everyone had the chance to let their hair down and have a good dance. Thank you to everyone who came along, we smashed last year’s target and raised over £2,000. Vijay Varsani

Want to fundraise? Get involved: www.sarcoma.org.uk/Fundraising


Fundraising

Camaraderie and positive energy on London’s Marathon Neill Simmons shares his motivations in preparing for his first marathon: to raise awareness about sarcoma

and support his close friend Dave Thompson, who he met exactly 40 years ago.

By the time you read this, I will have embarked on a challenge that no other man of my age

(or in my condition) should ever contemplate – The Virgin London Marathon 2014.

My inspiration for this? Simple, a lifelong mate: Dave Thompson. My reason for supporting Sarcoma UK? Sarcoma: this rare form of cancer which affects bone and soft tissue, has been attacking my mate for the last few years and made him extremely unwell. We both want to raise more awareness for this form of cancer and generate funds for anybody affected by sarcoma, today and in the future.

By coincidence, around the time of Marathon day, I will have known Dave exactly 40 years. We met, aged 7, at a caravan park our parents took a liking to, near Gatehouse-of-Fleet in the picturesque south west of Scotland. 40 years on, we still frequent the caravan park with our own families, a place we call paradise.

Dave’s family were from Northumberland, and mine from Cheshire, so we only ever met during the holidays at the caravan, but despite sometimes never seeing each other for months over the shutdown winter period, as soon as we arrived each year, our friendship was revived.

Dave (along with his brother Phil) came with me on my first holiday abroad without parents in 1984 – you don’t forget your first one, and believe me this one lives on in our memory.

Nowadays, with our busy family

and if I had to hand-pick someone to fight this battle – it would be him!

Frustrated at being helpless, and only able to repeat the same words of attempted comfort, I wanted to do something. I am neither a medic nor a magician – I know that – so I decided to ask him if I could run the London Marathon in his name, and to raise money for the charity of his choice, Sarcoma UK, who fund vital sarcoma research and provide support and information to the wider sarcoma community.

I’ve never run a marathon, or any distance that could even be

considered half of one. I had to pick a challenge, something that people will hopefully look at and feel inspired to donate.

Dave is currently receiving therapy from a Cognitive Therapist, which has been a great help. He simply refuses to give in - that is his challenge. (Read Dave’s article on page 12).

lives, we don’t get to see much of each other at the caravan. However, as my life evolved and the years ticked by, I realised that I had known Dave longer than any other friend in my life. Our parents were friends, our wives became friends and our children are all friends. Upon the unexpected sudden death of my mother in 2004, Dave didn’t think twice and drove up from London, for her funeral in Cheshire, before driving back down after the ceremony – that’s the sort of bloke he is!

In 2005, Dave was diagnosed with a fibrosarcoma in his abdominal

Neill Simmons Time: 4.05.03

“I have never run for a bus before, so it was extremely tough. When I got to about 23 miles that’s when it got

really hard, my body was screaming for me to stop.

Seeing Sarcoma UK’s cheering station at mile 25, and

knowing Dave was there with all his family and seeing my

wife, well that kept me going! After seeing them and then crossing the line it was quite emotional, that’s when it all feels worth it.”

wall. Despite all this, with Dave’s dogged determination, he chose to continue with as normal a life as possible with his young family. Credit to the guy, if you met him in the street you wouldn’t have a clue, he is always smiling, except when he’s talking about Newcastle United!

During his darker moments, I would write to Dave and basically tell him that if anyone could put mind-over-matter it was him! There is just something about Dave,


Blood, sweat and tarmacIntroducing Team Sarcoma: together, they ran 26 miles and raised over £51,000!

Fundraising

Duncan Wreathall Time: 5.02.13

With special thanks to our other Sarcoma UK runners: Henry Robson & Jane Butcher

Sarah Wreathall Time: 5.02.11

Peter Flynn Time: 4.43.30

Michael Larkin Time: 5.00.21

Phillippa Webb Time: 4.33.47

Ellie Gibbins

“We’ll never be able to thank this

charity enough for what they have done for us…but we can help them help more people!”

Married couple Duncan & Sarah, who also ran the Silverstone

half-marathon for us as a ‘warm-up!’

“See you

at the finish line!”

Peter took his running shoes on his honeymoon

to keep up with training – such

dedication!

“The Crowds

were fantastic! It was like the Olympics had

come back to London for the day!”

One London Marathon just wasn’t enough for Mike,

he came back for another!

“Every mile

was worth it!”

Phillippa’s challenge didn’t stop at mile 26 –

she also did the 20 mile, 200 obstacle

Rat Race in May!

“I wanted to

support my friends, their dad and everyone

with this type of cancer.”

Ellie ran in the Mini-Marathon – a race

for 11-17 year-olds.


Research

Thanks to all of you, a quarter of a million pounds is to be invested into future funding of Sarcoma UK research We now have further funding towards

research, in fact, our biggest ever! We’re

aiming to enhance understanding, develop

the best treatments and facilitate the

highest standards of care. We’ll be awarding

£250,000 for new research projects later

this year, all down to the hard work of our

supporters and fundraisers.

Grants have been awarded to a total of 12 sarcoma research projects, around the UK. That’s over £455,000 – and we’re upping our game!

How do the grants work?Each round of grants begins with a call for proposals. We spread the news that we are inviting grant applications across the sarcoma research community.

The researchers write proposals for projects looking into a particular area of sarcoma; this may be looking at the underlying genetics, a drug target, a new treatment, or a study into the effects of treatment (Read the ‘insights’ opposite).

The researchers then let us know how much money is necessary and how funds will be managed. Next, we put the applications through a vigorous selection process, which involves asking experts around the world to peer review the proposals. They are then assessed using a range of criteria including: scientific quality, value for money, and most importantly, potential to benefit sarcoma patients.

Once we have received the reviews our Research Advisory Committee meets to discuss the applications and make recommendations on the best way to allocate funds. Next up, our board of trustees meet to formalise the grants.

Sarcoma UK then informs researchers so that they can get to work. Awarding of grants is not the finishing line; we continue to receive regular updates from researchers throughout their projects and beyond.

With your dedication and commitment, we continue to build a strong charity funding even more research for the

benefit of sarcoma patients.

Insights into research and experimentation with new technologies to treat sarcomasLast year, Sarcoma UK awarded a grant to a team in Newcastle, who were researching and experimenting into how treatments affect sarcoma patients’ physical functioning. Sherron, a research physiotherapist, and a key member of the team, explains the project in more detail and Joanne, a patient, tells us her view

The researcher – SherronTreatment for sarcomas leaves many patients with a disability,

for example difficulty walking or climbing stairs. The level of

disability has traditionally been measured using clinical examination and questionnaires; but this kind of assessment is limited. New devices bring to light the possibility of performing better assessments in hospitals and the community. Our interest focused on exploring these new devices to see if they would improve assessments.

These new devices are the Open Source Movement Sensor (similar to a pedometer, but more advanced), the Xsens wireless motion tracking system (similar to those used in the film industry), and the Microsoft Kinect device (used in playing video games), which

captures the movements and three-dimensional position of people in space.

This is a pilot and feasibility study, in which these new technologies are being used

to capture the movements of patients when they are performing simple activities such as standing, walking, and climbing up and downstairs. Patients are then asked to take the activity monitors home for seven days, which gives us information about activity levels in their real world environment.

Evaluation of physical functioning in survivors of bone and soft tissue sarcoma – a feasibility study of two new

technologiesPrincipal investigator:

Mr Craig GerrandGrant amount: £30,000Project duration: 6 months


Research

Thanks to all of you, a quarter of a million pounds is to be invested into future funding of Sarcoma UK research

9

Insights into research and experimentation with new technologies to treat sarcomasLast year, Sarcoma UK awarded a grant to a team in Newcastle, who were researching and experimenting into how treatments affect sarcoma patients’ physical functioning. Sherron, a research physiotherapist, and a key member of the team, explains the project in more detail and Joanne, a patient, tells us her view

This is a particularly interesting project, as it not only gives us detailed information about the quantity and quality of walking, and other physical activities in hospital, but also gives us an insight into activity in the community, which has traditionally been difficult to assess. We would like to thank all of you, the sarcoma community, for supporting Sarcoma UK. You allowed us to apply for funding to study adult patients undertaking sarcoma treatment. We hope that it will lead to further larger studies, which will help us improve our assessments. It is only by measuring results, accurately, that we will be able to improve the outcome of treatments for sarcoma patients.

By no means the end…This research paves the way towards a better understanding of how sarcoma treatment affects patients. Ultimately, this could help to improve the experience of patients as they undergo treatments such as chemotherapy, radiotherapy and surgery and how they fare afterwards. Understanding the likely outcomes can help patients to make better-informed decisions about their care. It is possible that using these devices might help patients to achieve better results if they become part of treatment, for example as part of a rehabilitation game. In developing this research, we conducted Patient and Public Involvement workshops, which helped us to develop our project, and we are very grateful to those who participated.

The patient – JoanneI didn’t hesitate when I was asked to participate in the research undertaken by Craig and Sherron. In 2007, I was diagnosed with chondrosarcoma,

in my right leg, and underwent limb salvage surgery. This was an extremely

traumatic experience, but through the exemplary care, support and expertise I received, and continue to receive, from the Freeman hospital, I have been able to continue my life in a very positive, almost, limitless manner. As a consequence of my own experience, I believe that contributing to such a worthwhile research project is my opportunity to ‘give something back’ and

to share my experiences. It has been insightful to take part in the activities in clinic, to assess my mobility, but also to complete the questionnaire

to assess the impact on my everyday life. I am passionate about any study that

will benefit future patients, and this current project is essential when

assessing the benefits of limb salvage surgery. I am aware there have been advances in research and technology, even since my own operation and I hope this will continue. I am

now fascinated by limb salvage surgery, having read, with interest

about several high-profile salvage procedures performed at the Freeman

recently. I hope research into rare cancers continues to attract research funding, which, in turn, will raise awareness.

Dr Wackerhage and his team

About the research teamThis project is led by Mr Craig Gerrand: Consultant Orthopaedic Surgeon, North of England Bone and Soft Tissue Tumour Service: Newcastle Upon Tyne Hospitals, where he has been working since 2001. Along with colleagues in the Sarcoma Research Group, he has research interests in a number of aspects of sarcoma care. He is a former president of the British Orthopaedic Oncology Society and a member of the NCRI Sarcoma Clinical Studies Group. You may have seen him on the news recently talking about using a 3D printer to create a replacement pelvis!

Sherron Furtado, Sarcoma Research Physiotherapist, is responsible for the management and coordination of this project. She is an enthusiastic researcher, who likes travelling and adventure sports. An interest in outcomes for sarcoma patients was sparked when she carried out a National Multi-Centre Audit investigating service provision and outcomes for patients who have amputations for sarcoma.

The research team also includes Thomas Ploetz from Culture Lab, a human-computer interaction research group, and Alan Godfrey of the Clinical Ageing Research Unit in Newcastle University, who are pioneers in manufacturing and deploying these technologies.

“This is a

pilot and feasibility study, in which these new

technologies are being used to capture the movements of patients when they are

performing simple activities”

Connect • Sarcoma UK • Spring 20 14 www.sarcoma.org.uk

Awareness

Sarcoma Awareness Week 23-29 June 2014

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Join the sarcoma community – patients, families, friends, work colleagues, healthcare professionals and Sarcoma UK supporters throughout the UK – to get this vital information to your GP and be ‘On the Ball’ for sarcoma.

This Awareness Week we’re asking you to get involved and take our ‘On the Ball’ pack directly to your GP at your next appointment.

The pack contains simple yet effective tools outlining to GPs the signs and symptoms of sarcoma and guidance on how to refer patients to sarcoma specialist health services for diagnosis and treatment.

The aim of the campaign is to distribute 500 golf balls* and supporting guidance to GPs across the UK to ensure that sarcoma patients receive an early diagnosis.

‘On the Ball’ for sarcoma

The concept

Mr Rob Grimer, Sarcoma UK’s trustee and leading sarcoma surgeon at the

Royal Orthopaedic Hospital, has long been campaigning to

improve awareness and early diagnosis of sarcoma. The idea of using the concept of a golf ball as a trigger

for both patient and GPs to seek referrals to a

sarcoma specialist centre.

Your actions could help the person sat in the GP’s waiting room

behind you!

Is it SARCOMA

?

We need your help to make everybody ‘On the Ball’

for sarcoma!

*Before Sarcoma Awareness Week 2015


Awareness

‘On the Ball’ for sarcoma

What’s inside the GP Pack?

3 Sarcoma Diagnostic Tool for GPs

2 ‘Is it Sarcoma?’ golf ball keyring

1 A letter to your GP

Why?In 2012, Sarcoma UK, the Royal Orthopaedic Hospital Birmingham and the Pan Birmingham Cancer Network launched a pilot project to test out the idea of sending a golf ball to GPs in Birmingham to help raise sarcoma awareness.

We know that:• The current average size of soft tissue

sarcomas at diagnosis is 10cm – the size of a baked bean tin

• Over a third of sarcoma patients saw their GP three times or more before referral

• Only one in every four referrals for sarcoma is to a sarcoma specialist centre

• The average duration of symptoms before patients are referred for investigation for soft tissue sarcoma is over 1.5 years

We will send out your ‘On the Ball’ pack to kick-off Sarcoma Awareness Week from Monday 23 June.

Pre-order your pack today:

020 7250 8271

[email protected]

www.sarcoma.org.uk/Awareness/ontheball

10cm


Dave Thompson shares how cognitive hypnotherapy has had a real impact on his journey with fibrosarcoma.

Aged 38, I was diagnosed with a fibrosarcoma in my abdominal wall. I have always been a

determined person and been blessed with the most positive and supportive wife and family I could ever wish for; they would move mountains for me.

My family and I devised a plan for me to change my diet and start a serious exercise routine in order to get myself into the best possible condition. This helped enormously because my oncologist treated the cancer aggressively, which I was delighted with, but my lung operations took some time to get over. I dealt with the operations by giving myself a goal: to be discharged from hospital quicker than any of my previous lung operations. I do believe this ‘game’ helped me to get through the operations and each time I went in, my kids seemed much more relaxed as they knew I’d be home in a few days.

I was a senior oil trader at a multinational oil company. They were extremely supportive throughout my illness, although I did continue to work flat-out throughout my chemotherapy.

Work enabled me to focus on something else and gave me a degree of normality. In my mind, I was telling myself that life must go on, and that cancer would not win! The disease did change my perspective on life; things outside work that stressed me, prior to my illness, became less important and I became more chilled with life.

I also came to the conclusion that life was precious, that I should be spending more time at home with my family and was fortunate that work agreed to a year’s sabbatical.

We spent a year cramming in as

A stream of positivity

many trips abroad as we could during the school holidays, culminating in a round the world trip for nine weeks in the summer.

In 2012 I received the news that the cancer was rife within my bones and it was at this point that my wife was given contact details of a cognitive hypnotherapist (CH). I had no idea what a CH was and became rather sceptical as to what a therapist could actually do for me. I have always been a private person, hiding my feelings and preferring to deal with problems by myself (much to the frustration of my wife). So as you can imagine, I wasn’t too hopeful about therapy and felt a little bit embarrassed that it was going to be a wasted trip for the therapist.

However, I thought I would give it a try, and after my first session, I was astounded as to how uplifted I felt, so we arranged to carry on meeting

on a weekly basis.

My therapist introduced me to a number of techniques on how to help deal with the cancer and how I could use my mind to attack it. On days when I received bad news, I was taught to treat them as hurdles rather than barriers; simple advice one would think but very effective. I was taught techniques to deal with the problems I encountered.

What continuously intrigues me is that although they appear to be common sense and relatively simple, they are extremely powerful in changing behaviour. I now have a list of techniques or ‘gadgets’ as my therapist and I call them to deal with various scenarios. I have them on my iPad so I can listen to them whenever required.

I found the healing work invaluable. I imagined a

source of healing entering my body. What came to my mind was a green flame, which travelled up though my arm and enveloped the tumours in my abdomen. The green flame was harmless to everything apart from the tumours, as I envisioned the flame burning and shrinking them. I would also send the flame to my bones and lungs; with my lungs it was slightly different, because it would appear like a firework display, like sparklers coming out of my chest (a bit like the Katie Perry video for Firework).

I have found that this work has changed the way I look at things and deal with issues. I feel that I’ve been given an injection of positivity, which is rather refreshing. I even used one of the ‘gadgets’ on my youngest daughter when she was particularly stressed about something and it worked, much to her surprise.

I think that one of the problems with cancer is that quite often you are not in control; you are given information by the consultant, which can make you feel helpless, alone and that everything you read tends to be negative. I think this is the reason why I found healing a powerful booster for me. It was a way I could actually take some control over dealing with cancer, and I always feel inspired after listening

“It was

a way I could actually take

some control over dealing with the

cancer”

Support & information

Dave with his family, wife Anjula and daughters Zoe and Jasmine


ResearchSupport & information

to the recording, even now. With the help of my therapist, who I have to say is outstanding, I feel more in control and much better prepared to deal with the ups and downs of the disease. If I had a magic wand, I would give all cancer patients access to cognitive hypnotherapists, as I know first-hand how much they can help!

I’ve found the whole experience of cognitive hypnotherapy to be extraordinary; it all came as quite a surprise! Prior to starting the therapy, I would have thought I would be sitting there wondering what the therapist was talking about, but I actually embraced it and found it invaluable.

From what I’ve been through, this process has helped me to understand that it’s important to realise that a year ago, I was in a much worse state mentally and physically. I have realized, with the help of my therapist, that some good things have resulted from the cancer, for example spending more time with the family, which was less frequent prior to sarcoma.

I have scans every 3 months and I have learnt to deal with these scans as potential hurdles and am able to focus on the longer term. This has increased my positivity, which can only be of benefit to my body.

I’m a novice when it comes to the mind but I do believe it to be extremely powerful, and by looking at the long term, you are preparing your body for the long game.

Currently, I am involved online with cancer discussion forums (www.sarcoma.org.uk/Sarcoma-UK-Online-Support-Groups) and I get a real buzz from helping others who are new to this form of cancer. I also have a friend, Neill, who is kindly running the London Marathon in 2014 on my behalf (see page 4).

To find your nearest Cognitive Hypnotherapist: www.cognitivehypnotherapy.org/ therapist-finder

Get your voice heard in the East Midlands!

Have you been affected by gynaecological sarcoma?

Paul Robson, one of our Sarcoma Voices, would like to gather the experiences

of sarcoma patients in the East Midlands. Paul is the Sarcoma

Patient Representative for the East Midlands

Cancer Network. He attends the twice yearly East Midlands Sarcoma Action Group Meetings where he

acts as a patient voice, sharing his personal

views and opinions to the professionals who are making

decisions about the treatment and care of sarcoma patients in the area.

Paul says, “My job is to represent the sarcoma patient point of view at the twice yearly meetings of the specialist sarcoma team. There are

Sarcoma UK are conducting a survey to gather women’s experiences of gynaecological

sarcoma. We hope to use the results from the survey to highlight any issues in care, so that we can move toward improving the diagnosis

procedures and

many types of sarcoma and all our experiences are unique. I would like to be the voice of us all.”

Live in the East Midlands area? Paul would like to hear from you. Check out the East Midland’s website: www.sarcoma.org.uk/support-groups

Sarcoma Voices is Sarcoma UK’s active community of people who have been affected by sarcoma cancer, either as a patient, carer or family member, who want to share their story and experiences to help shape and improve sarcoma services and care, and to raise awareness. www.sarcomavoices.org.uk

treatment options available. So far, you have identified that there is a lack of information for patients with gynaecological sarcoma. We are currently working on a new information booklet called Understanding gynaecological sarcomas. It covers what gynaecological sarcoma is, how it is diagnosed and explains treatments such as surgery, chemotherapy,

radiotherapy and hormone therapy.

Complete the survey online at www.sarcoma.org.uk/Gynae or contact the office for a copy to fill in by hand.

Pre-order your copy of Understanding gynaecological sarcomas on 020 7250 8271 or [email protected]

Paul Robson

The bone & soft tissue cancer charity


Friends

News from the wider sarcoma network, what they’ve been getting up to and

how this tight community can further support you.

Gynaecological sarcomas represent approximately 3-4% of all gynaecological

cancer, and 13% of all sarcomas. They mostly arise in the uterus, though they can occur in all areas of the female genital tract.

5,597 new gynaecological sarcomas were diagnosed in England between 1985 and 2009. 185 in 1985, and 281 in 2009 (Figure 1).

There was a significant increase in the age standardised rates of gynaecological cancers between 1992 and 1993, due to changes in the diagnostic criteria for uterine sarcoma. Between 1985 and 1992, incidence rates averaged at 7 cases per million female population, which increased to 8.8 cases between 1993 and 2009. Since 1993, incidence rates have remained stable with no significant increases or decreases found.

Age specific rates of gynaecological sarcomas are highest in women aged between 50 and 60. They are only very rarely diagnosed in women younger than 30, with 147 diagnoses between 1985 and 2009 (less than 6 diagnoses a year on average).

The most common part of the body for gynaecological sarcomas to arise is the uterus (83% of total diagnoses 1985-2009). This represents 4% of all tumours (carcinomas and sarcomas) diagnosed in the uterus during that time period). There was considerable variation in age distribution profiles across the different sites (Table 1). The majority of vulval sarcomas (61%) were diagnosed in females less than 55 years of age, compared to only 34% of ovarian sarcomas.

Leiomyosarcoma is the most common histological subtype of gynaecological sarcoma (Figure 3). Leiomyosarcoma incidence statistics were published in the Summer 2012 edition of Connect. Leiomyosarcomas are smooth muscle cell tumours and one of the most common types of soft tissue sarcoma in general.

Strength in numbers...

Your chance to Shine!Shine Cancer Support focuses on supporting men and women between the ages of 20 to 40 who’ve been diagnosed with any type of cancer. Run by people who have first-hand experience with cancer, they believe people with cancer can provide unique support to those living in similar circumstances. They don’t do hospitals, scheduled speakers, or formal discussions; they run activities at the places you want to go to – like the local pub or café.

Their vision is that every adult in the UK diagnosed with cancer can access the help and support that they need in a way that suits their lifestyle.

They’re making their vision a reality:

• Fostering peer support

• Chatting and connecting via Facebook

• Holding annual camping trips and “Escapes”

• Advocating for the needs of younger adults with cancer.

[email protected]

@shinecancersupp

PAWS-GIST clinic opensThe PAWS-GIST national alliance have launched a clinic for PAWS-GIST patients. The alliance will hold three clinics each year at Addenbrookes Hospital, Cambridge.

Each clinic will bring together up

to twelve patients who will meet with GIST specialists from a variety of disciplines.

Attending a clinic gives you the chance to have your individual case examined by a team of experts in the UK. You will have the opportunity to meet others living with this rare cancer. Once your individual circumstances have been reviewed, you and your local oncologist will receive a report containing recommendations and a treatment plan tailored to your specific needs. The clinic runs for two days and there’s assistance available to help with travel and accommodation expenses.

The PAWS-GIST national alliance aims to raise awareness, improve treatments, stimulate research,

and understand the causes and mechanisms of GIST in children, young people and those with wild-type GIST. They aim to be a catalyst for research, which will

improve treatments and eventually find a cure.

www.pawsgistclinic.org.uk

The Big ConversationThank you to all our Sarcoma Voices who took part in The Big Conversation event in March. Over 70 of you attended the event! View the presentations and don’t miss out next year. Sign up here: www.sarcoma.org.uk/voices


Gynaecological sarcomasPublic Health England’s West Midlands Knowledge and Intelligence Team

continues its regular reports for Connect, with a focus on gynaecological

sarcomas in this issue.

There were 2,887 gynaecological leiomyosarcomas diagnosed between 1985 and 2009, 52% of all gynaecological sarcomas. Endometrial stromal sarcomas were also relatively common, with 1,124 (20%) cases diagnosed, as was sarcoma not

otherwise specified (NOS- 16%). The remaining 12% of diagnoses were comprised of a number of rarer sarcoma morphologies, of which rhabdomyosarcoma and fibrosarcoma were the most prevalent.

Statistics

15

Key facts• 5,597 new gynaecological

sarcomas were diagnosed in England between 1985 and 2009

• Age standardised incidence rate: 9.2 cases per million female population in 2007-2009

• Number diagnosed in 2009: 281

• The most common anatomical site of gynaecological sarcoma diagnosis is the uterus

Table 1: Counts of gynaecological sarcoma diagnosed at each site, and percentage diagnosed in under 55s (England: 1985-2009)

Figure 1: Counts of gynaecological sarcoma diagnosed each year (England: 1985-2009)

Diagnosis year

Num

ber o

f dai

gnos

es

300

250

200

150

100

50

0

1985

1987

198

9

1991

1993

1995

1997

1999

200

1

2003

2005

2007

2009

Leiomyosarcoma ESSNOS AdenosarcomaOther

Figure 3: Age standardised gynaecological sarcoma incidence rates by morphology (England: 1985-2009)

Age

sta

ndar

dise

d in

cide

nce

rate

(p

er m

illio

n po

pula

tion

)

6

5

4

3

2

1

0

85-8

7

87-8

9

89-

91

91-9

3

93-9

5

95-9

7

97-9

9

99-0

1

01-

03

03-0

5

05-0

7

07-0

9

1985-92

1993-09

Figure 2: Age specific gynaecological sarcoma incidence rates (England: 1985-2009)

Age

spe

cific

inci

denc

e ra

te

(per

mill

ion

fem

ale

popu

lati

on)

25

20

15

10

5

0

0-4

10-1

4

20-2

4

30-3

4

40-4

4

50-5

4

60-6

4

70-7

4

80-8

4

Age at diagnosis

Total gynaecological sarcomas diagnosed 1985-2009 in England

Anatomical site of sarcoma

Total diagnosed

% aged under 55 at diagnosis

Uterus 4,652 43%

Ovary 420 34%

Cervix 180 59%

Vulvo-vaginal 262 55%

– Vaginal 137 50%

– Vulva 125 61%

Other 83 46%

Total 5,597 44%

Board of Trustees Lesley AbrahamDr Jane BarrettKaren DelinProf Rob GrimerLeigh HibberdineIan HughesPeter JayNicky MellowsSharon ReidHelen StradlingDr Jeff WhiteSam WhittamGlyn Wilmshurst

Patron Richard Whitehead MBEScientific/Medical Advisor Professor Ian JudsonHonorary President Roger Wilson CBE

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.

Registered as a charity in England and Wales (1139869) and in Scotland (SC044260). A company limited by guarantee in England and Wales (7487432)

Editorial and production teamEditorial: Vicki Smith, Scott Temple, Glyn WilmshurstDesign and layout: INQ Design Ltd 020 7737 5775

49-51 East Road, London N1 6AH

020 7250 8271

[email protected]

www.sarcoma.org.uk

@Sarcoma_UK

uk.sarcoma

Donate Giving a one-off or regular donation ensures that we can continue to raise awareness, provide support & information

and fund vital medical research into sarcoma

You could provide the necessary equipment for Reema to continue her vital sarcoma research.

£50

You could educate ten GPs as part of our ‘On the Ball’ Campaign. The Golf Ball reminder could prevent Harry from having to visit his GP three times before being referred to a sarcoma specialist.

£20

You could help Tom find the support he desperately needs at a sarcoma support group in his area.

£100

You could banish Abdul’s feeling of isolation. He can receive our newsletter, Connect, three times a year for two years.

£10 You could enable sarcoma Clinical Nurse Specialist, Julie, to give every newly diagnosed patient a Personal Guide to Sarcoma.

£5

How?

Text: Text SAUK00 £10 to 70070Minimum donations £1 and maximum donation is £10. Gift Aid can also be added.

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

Bank: Made via any branch of HSBC using the following details to fill out one of their paying-in-slips:Payee: Sarcoma UK Sort Code: 40-52-40 Account No: 00019763Bank name: CAF Bank Ltd, 25 Kings Hill Ave,West Malling, Kent, ME19 4JQ

Online: www.sarcoma.org.uk

www.sarcoma.org.uk

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