Connect info@sarcoma.org.uk sarcoma.org.uk
The bone & soft tissue cancer charity
Spring 20 15
London calling! Meet the Sarcoma UK runners lining up in record numbers for the 2015 London Marathon
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Gynae sarcoma report
Ground-breaking findings in our new report Gynaecological Sarcoma: The Hidden Cancer
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How does your money fund sarcoma research? Find out how we launched our ÂŁ350,000 research grant call
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Osteosarcoma Insight into bone cancer from Public Health England
From the Chief Executive
Sarcoma UK’s key messages Sarcoma UK is the only charity in the UK focusing on all types of sarcoma. Our mission To increase knowledge and awareness of sarcoma through groundbreaking programmes that inspire involvement and transform the landscape for everyone affected by sarcoma.
• We raise sarcoma awareness to initiate change and improve standards of treatment and care • We seek answers through research • We provide support & information for the sarcoma community Our impact
Awareness Connect (Sarcoma UK’s publication) is sent out three times a year and distributed to a database of 7,000
• • Sarcoma Voices is our active sarcoma community – see how you can help and “Speak out!” at sarcoma.org.uk/voices
Research
• Sarcoma UK has awarded scientific and medical research grants worth over £700,000 • 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 at sarcoma.org.uk/ help. Subscribers chat to each other via email and gain valuable support from other patients in the same situation
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his edition of Connect is full of stories about champions – real people doing something special to help people affected by sarcoma. Our personal experience (page 3) tells the story of Charles, a champion of his daughter Elesha who has bone cancer. Charles tells us about why he took on the challenge of the London Marathon rather than leaving the running to his champion greyhounds. Rob and Michael, our Sarcoma Voices, are champions for patients in clinical research and NHS service improvement. They tell us about what this involves and share some of their personal observations. Helen is a sarcoma champion in the healthcare professional world. She is a leader in sarcoma nursing, and in her interview on page 7 she gives us a fascinating insight into the vital role of the sarcoma Clinical Nurse Specialist. I am delighted too that Sarcoma UK has been able to act as a champion for women with gynaecological sarcoma, through our survey and new report: Gynaecological Sarcoma: The Hidden Cancer. Everyone affected by sarcoma are champions in their own right. Good luck to all our London Marathon runners and anyone facing a personal challenge because of sarcoma. Best wishes
• We provide support to 13 local sarcoma groups around the UK, and help new groups set up • We are active on Facebook Facebook.com/uk.sarcoma and Twitter @Sarcoma_UK where our sarcoma community communicate 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: 1. Soft tissue cancers 2. Primary bone cancers 3. Gastrointestinal 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
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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 Connect
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Lindsey Bennister Chief Executive
The most common sarcoma sub-types are:
Soft tissue sarcomas • Leiomyosarcoma • Fibroblastic sarcoma • Liposarcoma • Gastrointestinal stromal tumour (GIST) • Kaposi’s sarcoma (KS) • Angiosarcoma • Malignant peripheral nerve sheath tumour (MPNST) • Synovial sarcoma • Rhabdomyosarcoma Bone sarcomas • Chondrosarcoma • Osteosarcoma • Ewing’s sarcoma • Chordoma
The current sarcoma landscape
• 10 people every day are diagnosed 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
sarcoma.org.uk
Personal experience
My marathon journey Charles Turner aka DarkCAT reveals his motivations behind taking on the ultimate test and why you should always believe in your own vision.
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Running in the Virgin London Marathon helps me to raise sarcoma awareness and offer something back to the charity. I was really excited when I received the news I would be part of ‘Team Sarcoma’ as I had started preparing for this (hopeful) moment early in January 2014. At that time, I weighed in at 17st 7lb. Having lost over four stone to date, I am now 12st 13lb. I was glad that the foundation preparation I put in will be rewarded! After hearing that Elesha had cancer, I have seen her angry, upset and hurt. I too have hit some extremely dark days but I am truly over the other side. I am inspired by Elesha, who is now a model at Models of Diversity - a company that specialise in disabled modelling. I smile most days and am always full of laughter. I can only now ever take positive stances out of every situation and never take anything for granted. Last October, I started my new job as service manager for Schindler Lifts. I look after seven engineers and cover Essex, all of east London and some parts of north London. My clients also include RBS, IKEA and Lakeside sarcoma.org.uk
Charles’ daughter Elesha says when her dad puts his mind to it, he can do anything!
Photo by Ian Randall
y daughter, Elesha, was diagnosed with Parosteal Osteosarcoma, a rare type of bone cancer. The day before her 20th birthday, Elesha had her femur bone removed and two of her quad muscles cut out and replaced with a titanium plate. Although she will never be as physically able as she used to be, she is walking with the aid of crutches. She has been given a second chance in life and this is why I am running my first ever marathon, I want to do something to challenge myself both mentally and physically, as well as make my daughter proud of me (as long as I finish!).
Shopping Centre, so it is really challenging but the efforts are rewarding. I will be asking everybody for sponsorship! Being involved in greyhound racing for the last five years has been full of highs and lows. Currently, I own three greyhounds, one is retired and I have bred a litter from her. It gives me so much pleasure to see them grow from little saplings to their first trial, then their first race. I have my own prefix which is DarkCAT, CAT being my initials. My greyhounds are called Darkcat Vadar and Darkcat Ashtina (Elesha’s middle name). Both have only had three races and yet to win! I have just purchased a three-month old pup that I will name Darkcat Sarcoma and all prize money will be donated to Sarcoma UK. Greyhounds can’t race until they are 16 months old so next year will be quite a build up! Running has actually become my own hobby at the moment. I love cricket and watching American football. I have had a slow start to 2015 but
am now getting into gear. I am running four to five days a week, reaching 12 miles on average, although this morning I smashed the 16 mile barrier. The last two miles were a bit of a struggle but there are 91 days to go (not that I’m counting!), so I have the time to put in the work needed. I will be running six days a week now. I am aiming to complete the marathon in three and a half hours. At the age of 42 and this being my first ever marathon, it should be within my grasp providing all the training goes well. I will say especially for any marathon new-comers like myself, to make sure you run over 20 miles at least four times before the big day. Also reward yourself afterwards. Although I am the one who needs marathon advice! Elesha and I are heading to New York post-marathon. I have never been to America but I am envisioning pancakes, doughnuts and more pancakes - and a little of bit of sightseeing in between! I am looking forward to just the two of us spending some quality dad-daughter time together. Follow Charles’ progress on Twitter @charlesturner13 Connect
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Awareness
Dusting off their lycra and lacing up their trainers Meet Team Sarcoma: our 22-strong Virgin London Marathon runners, who will be lining up on the start line this April. They make up our largest team ever, and for many of them, 2015 is their first time ever running a marathon.
Team Sarcoma • Megan Davies • Patrick Donnelly • Darren Emmett • Peter Flynn • Amelia Granville • Laura Greene • James Harraway • Clare Jackson • Terry Johnson • Simon Knightbridge • David Lee • Chris Martin • Claire McIntyre • Antonia Parsons • Seigo Robinson • Jean Roffe • Daniel Skelt • Alice Snape • Philippa Tippett • Charles Turner • Georgina Webb • Colin Wright
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“I am runnin g because I want to rais awareness fo e r the charity , to support my boyfrien d and h is fam ily, to pay my respects to h is sister. I never knew Katherine, a lthoug h ove r the years that James a nd I have be e n together, I have slowly learnt more a bout her – what sort of person she w as and her likes and dis likes. I want to fundraise for Sarcoma UK to pay tr ibute to Katherine, w ho I never m et, but so wish I cou ld have.”
Alice Snape
, 31 Editor –Th in g s & In k: an ind epend ent tattoo m agazine
sarcoma.org.uk
Awareness
Come and make some noise!
“We decid ed we wante d to do someth ing to raise mo ney and awareness for sarcoma , for Rachel. So we set ourselves the go al of running not jus t the London Marat hon but also the Brighton Marathon an d taking part in the Toug h Mudd er, all in the same month!”
Daniel Skelt, 27 & Pat Donnelly, 25 Brokers
We have two official Sarcoma UK cheer-points on Sunday 26 April – bring your friends and family down to spur on our inspiring marathon runners. Come and be part of the world’s largest annual fundraising event and soak up the festival-like atmosphere. We have t-shirts, bang-bang sticks and banners to help you stand out from the crowd.
Sarcoma UK wh ich is a “I am running in aid of d d to helping people an small charity dedicate th y are diagn osed wi their families when the ey helped my mum in th is form of cancer. Th d ed with the cancer, an the few months she liv In . ily me and my fam still continue to support ‘year of fir sts’ and help ord er to get through my decid ed to take on a with the process I have and run the Marathon big personal challenge ally mark the end of the in 20 15 wh ich will actu ‘year of fir sts’.”
Clare Jacksoracn,ens32 Ltd
Special Events – Sa
sarcoma.org.uk
Cheer-point 1 Contact – Jan Cornell Mile 12 (Outside Sainsbury Local, 13-14 Bermondsey Square SE1 3UN. Bermondsey Tube)
Cheer-point 2 Contact – Kat Tucker Mile 25 (Cleopatra’s Needle, Embankment). From 10am onwards If you’d like to set up your own cheering station, or need more information, our fundraising team are here to help: fundraising@sarcoma.org.uk or 020 7250 8271 sarcoma.org.uk/running virginmoneylondonmarathon.com
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Fundraising
Fundraising can be a ball... Our fundraisers have been busy having fun, reaching personal goals and pushing their own boundaries. Thank you to each and every one of you, you never cease to amaze us. other sarcoma patients on our online support group, GroupSpaces, Jen decided to host a film night, accompanied by bubbles and a three course buffet. Jen raised over £4,500 – now that’s show business! Jen Bremner
“We’re completely overwhelmed by the generosity of people.” Paula held the ‘Dean Magnus Memorial Ball’ at Epsom Race Course. A sit down dinner, auction and live music, made it a real night to remember. Did we mention that it raised an astonishing £21,345.76! Paula Magnus “I want help raise awareness of sarcoma.” After receiving huge support from
to the finish line. All his efforts were well worth it, having raised over £1,300. Anthony Phillipson Whether you raise £10 from cleaning out your copper jar, £100 from selling your homemade cakes or £1,000 from taking part in a sporting event, they all add up to helping everybody affected by sarcoma. Get in touch with our fundraising team. fundraising@sarcoma.org.uk 020 7250 8271.
“I knew I could follow my auntie’s example to never give up.”
Paula Magnus (right)
Anthony took on the Leicester Marathon, to fundraise in memory of his aunt Janet. After 10 miles, he was hit with crippling cramp, but taking inspiration from his aunt, he continued on and made it
View our fundraisers gallery: sarcoma.org.uk/Fundraise
GEAR YOURSELF UP! Prudential Ride London-Surrey 100 Sunday 2 August 2015 Fundraising pledge: £700 Limited places
Get back in the saddle for Team Sarcoma. Follow the 100-mile route made famous by the world’s best cyclists at the London 2012 Olympics. With views of iconic landmarks and leg-testing climbs, every pushed pedal will help to transform the lives of everybody affected by sarcoma. fundraising@sarcoma.org.uk 020 7250 8271
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Connect
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The bone & soft tissue cancer charity
sarcoma.org.uk
In the hot seat
Helen Stradling Helen has worked at the Nuffield Orthopaedic Centre in Oxford since 1998, specialising in sarcoma since 2005. She currently holds the position of Advanced Nurse Practitioner – sarcoma. She is also a founder and the outgoing Chair of the National Sarcoma Forum, a network of sarcoma clinical nurse specialists and allied healthcare professionals set up to help share best practice in sarcoma management. Describe a typical day
to specialists sooner. Some GPs are fantastic, of course, but sarcoma is so rare that GPs may only see one in their working lifetime, so it’s not always in the back of their minds as a possibility.
No two days are the same, but on a Friday I do the nurse-led followup clinic, which has a fairly similar format. In the clinic I see patients post-treatment and do their routine follow-up – like x-rays, scans and checking that they are OK. It’s really what the doctors used to do, but a lot of nurses have taken on the extended role. It gives patients a longer time in clinic. Instead of a few minutes with the doctor, seeing a nurse means not only the medical side is dealt with, but there is the opportunity to go into the holistic issues about whether work or finances are all right as well. After clinic, I concentrate on National Sarcoma Forum issues – I have recently been working on the agenda for its fourth national meeting. Meanwhile, patient/carer phone calls and emails are dealt with as they arise throughout the day.
What are the most rewarding and frustrating parts of the job? One of the most rewarding things is seeing patients all the way through their ‘pathway’ – from pre-diagnosis, through their treatment and followup, and then being able to discharge them at the end. You see them through the whole process and are there as their support. It’s nice to get to know people and their families and to help them through their journey. The most frustrating thing is seeing patients who have had their symptoms for a long time, but who were not referred to us early on. I would like to see more awareness of sarcoma so patients are referred sarcoma.org.uk
What is the biggest challenge facing newly-diagnosed patients?
Helen Stradling
The biggest challenge is getting information relating to sarcoma. If you go on the internet and do a search you’ll get millions of hits, which can be really confusing for people. Having contact with specialist services and specialist nurses who can go through the information with you is important, particularly because there are so many different kinds of sarcoma. Your specialists or the people at Sarcoma UK are always happy to answer questions.
How is the treatment of sarcoma changing? I’ve been working with sarcoma patients for 16 years – and in a more specialist role for the last 10 years. There’s been a quite radical change, especially with regard to “I would genetics and like to see more research. The awareness of sarcoma care and treatment so patients are referred that patients are getting to specialists is now a lot sooner” more individual. We have new treatments for different types of sarcoma, whereas previously patients may have had a more generalised treatment. There are also improved surgical techniques,
and chemotherapy and radiotherapy treatment is specific to each case.
How do you keep abreast of scientific developments? New information comes from the National Sarcoma Forum, the British Sarcoma Group and from research paid for by Sarcoma UK. Being part of a specialised multi-disciplinary team [which includes the surgical consultant, oncologists, nurses and other health professionals who care for sarcoma patients] allows us to share new information locally and nationally.
What changes would you like to see to the system? I’d like to see patients have certain treatments closer to home. There are specialist centres across England, but this still means some patients have to travel a long way, even for routine scans. This is because we are not able to get the funding for them to be done locally. It can make what is already a difficult situation even more difficult. With the way things are now image linked with computers, it would be great if scans could be done locally, but reviewed within the specialist centres.
What advice do you have for patients who need a stay in hospital? It’s always important for patients in hospital to keep up with their support system – ask friends and family to come and visit, or bring in a computer for emailing and so on. Keeping in contact with their social circle will help them feel like they are still involved and it helps to maintain a kind of normality, especially if they are far from home. Carers can also help – by letting nursing staff know about any relevant issues the patient might not have mentioned. Connect
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Support & information
Fighting to be Gynaecological Sarcoma: The Hidden Cancer is Sarcoma UK’s new report of the personal experiences of women in the UK with gynaecological sarcoma who took part in our survey in 2014.
W
omen with gynaecological sarcoma - a form of sarcoma that develops in the connective tissues of the female reproductive system - face an uphill battle to access the best treatment and care for their cancer. In our new report, women diagnosed with gynaecological sarcoma describe their fight to reach sarcoma specialist services. Even following the return of their sarcoma, or when it has spread to other parts of their body (metastasised), many women were not referred to a sarcoma expert for input to their treatment and care. Yet, guidance from the National Institute for Health and Care Excellence (NICE) recommends that sarcoma specialists are involved as soon
as a diagnosis of gynaecological sarcoma is made. From our findings, we ask why there appears to be a determined reluctance amongst gynaecologists and gynaecological cancer specialists to involve sarcoma specialists, from diagnosis and throughout treatment for gynaecological sarcoma. Chantelle Harding (below) was diagnosed with endometrial stromal sarcoma in 2006 following a standard operation for suspected fibroids. She said, “I still feel aggrieved that my initial gynaecologist and oncologist never suggested specialist intervention. Indeed, if I had not been so pro-active and followed other sarcoma patients’ advice, I would be in a much worse situation than I am today, thankfully.” Survival rates for gynaecological sarcoma have not improved significantly in the past 20 years. Sarcoma UK believes that this could change if women reach
Key facts about gynaecological sarcomas
• Occur in the female reproductive system: the uterus (womb), ovaries,
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vagina, vulva and fallopian tubes • Three to four per cent of all gynaecological cancers are sarcomas • Gynaecological sarcomas make up 13% of all sarcomas • Most gynaecological sarcomas (85%) occur in the uterus (womb) and 7% occur in the ovaries • 52% are leiomyosarcoma – a cancer of the smooth or involuntary muscles, mostly but not always they occur in the uterus • 24% are endometrial stromal tumours – a cancer of the connective tissue in the uterus Connect
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sarcoma.org.uk
Support & information Research
heard
We are here to help you
sarcoma experts at an earlier stage in their treatment. Our report also identified that women with gynaecological sarcoma are falling into a gap between the two specialisms. The majority of women in our survey did not see a clinical nurse specialist at any stage during their diagnosis and treatment, denying them access to vital emotional support and information about their treatment options and care. Lindsey Bennister, Sarcoma UK’s Chief Executive said, “Women with gynaecological sarcoma urgently need the gynaecological and sarcoma specialists and their professional organisations to sit round a table and agree a consensus position and guidelines on the management and treatment of gynaecological sarcomas. Only with this agreement will we be able to have truly effective clinical pathways for the referral, diagnosis and care of women with gynaecological sarcoma across the NHS.” To read the report visit sarcoma.org.uk/GynaeSarcomaReport
Scotland, Wales and Northern Ireland We acknowledge the different health services in Scotland, Wales and Northern Ireland who operate different models for treating women with gynaecological sarcoma. The findings and recommendations in this report relate mainly to NHS England services. However, we believe that the findings of this survey will be of interest to women and clinicians in these nations in relation to developing best practice and improving the experiences of women with gynaecological sarcoma.
Order our booklet
020 7250 8271
info@sarcoma.org.uk sarcoma.org.uk/publications
Join our online gynaecological sarcoma group Shared care The National Institute for Health and Care Excellence Improving Outcomes Guidance for Sarcoma (2006) recommends a ‘shared care’ approach where treatment and care is managed jointly between gynaecological specialists and sarcoma specialists. Where to go for support and information • Meet other people with sarcoma at a local sarcoma support group. Check our website for details of your nearest group or phone us for more information on 020 7250 8271. • Phone the Sarcoma UK office for expert information about gynaecological sarcomas. sarcoma.org.uk
If you are affected by gynaecological sarcoma, join women from all over the UK – who offer each other advice and friendship, as well as helpful and practical information and tips. GroupSpaces is a private group where everybody is respectful of each other and information is treated confidentially. Chantelle Harding, a gynaecological sarcoma patient and group moderator, welcomes new members, “This group is an excellent vehicle for women to express very personal issues and experiences. Apart from our gynae sarcomas, it is amazing what other things we have in common together with that vital sense of humour, when appropriate and needed! The ability to post a message at any time of day or night is very therapeutic and reassuring, it is quite surprising how often an on-line chat can get started in the early hours!” Join here: sarcoma.org.uk/Sarcoma-UK-Online-Support-Groups
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Research
The Medical Research Cycle Research, and medical research, can be viewed as a cycle, as each project generates new ideas and gives us something else to study or look at. Sarah McDonald, our Head of Reaserch, explains how your donations and fundraising efforts kick-start the cycle. What is research?
Ideas
types of research project. They could involve: lab work; a prospective study Knowledge and understanding that looking at a test or change to may have come from previous work treatment; a retrospective or from reading an academic study looking at a paper. Data and evidence “Researcher specific question; or is needed to back up projects need a study based on an idea. patient data and funding, which questionnaires. is where your Researcher projects Research need funding, project vital donations which is where your A project will be go” vital donations go. designed to investigate For example, the project an idea (also known as may need to be staffed using testing a hypothesis). It will be nurses and researchers, or it may defined and planned in advance, need funding to print and distribute including drawing out the necessary questionnaires. Other costs could also steps needed to investigate the idea come from seeking ethical approval and reach an answer. There are many
Work that is undertaken to build knowledge in a subject, in this case sarcoma. The key factor is that it’s the acquisition of new knowledge. There are three main types of research: 1 Basic research: This can be experimental or lab-based. It refers to the direct testing of new ideas to see if they are accurate or not. 2 Applied research: Testing a known or proven idea that can be used in a more applied / practical way. 3 Translational research: This moves ideas out of the experimental setting and into everyday use.
The Research Cycle Ideas Academic papers
Fundraising & donations
Research project
read by other researchers
Interesting questions arising from research
Changes to practice Results
Intellectual Property/ Tech transfer Translational research Drug discovery Devices
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Commercialisation Improvement for patients
www.sarcoma.org.uk sarcoma.org.uk
Research
and licensing to meet regulatory requirements.
Results There will be a set of data to analyse and from which to draw conclusions. What happens next with these results is that we begin to see the impact and influence of our research.
Academic papers Results and conclusions from research are published in academic journals for other researchers to read. This is how the information is communicated globally. Researchers will then acknowledge these papers in their own work. The sharing of these results is integral to academic progress and research, to actively and openly contribute to the knowledge base for others to read and use. This is a key component of research funded by both the Charity sector, UK Government and European Union.
Interesting questions Work done in one study may open a new area of interest for either the researcher doing the work, or another researcher who would read about the work in an academic paper. This will then lead to the generation of new ideas and questions to be researched, maintaining the cycle of research.
Changes to practice Results from these studies can yield immediate changes to clinical practices, which is where the direct benefits to patients will be visualised. This may relate to: diagnostic testing, surgical interventions and treatment regimens for chemotherapy. It will also provide an evidence base for policy driven changes linked to commissioning and service provision.
This relates to the transition between the experimental phase and the process by which use becomes standardised. This stage is also linked to the changes to practice by which new drugs, devices and procedures become available for use. An aspect of this is the Commercialisation pathway around
the process of taking a product to market.
Improvements for patients This is the aim for Sarcoma UK and what we are working towards: a better patient experience from the first interaction with a clinician.
Visit our research pages for more information: sarcoma.org.uk/research
How does your money fund our research? In January we launched our £350,000 research grant call to fund ground-breaking research. Your donations have enabled us to fund our largest annual research call to date. Here are Sarcoma UK’s processes for funding research. The Panel Our Research Advisory Committee (RAC) is made up of experts in sarcoma with varied specialisms. Using their differing perspectives and areas of expertise, they apply their own knowledge, in addition to the peer reviews of applications, to ensure high quality research recommendations are made to our Board of Trustees. Researchers are invited to apply for two types of grant: • Small Grants: Our pump-priming grants (around £25,000) are available to test new ideas and generate preliminary data for a larger application. • Large Grants: Our brand new grant scheme (up to £120,000) will support members of staff on a sarcoma project. Read our research strategy on our website sarcoma.org.uk/research alongside our current and previous grant holders sarcoma.org.uk/fundedresearch
Intellectual property and technology transfer Depending on the type of research, especially in the drug development or devices field, new discoveries may involve management of Intellectual Property and Technology Transfer. sarcoma.org.uk www.sarcoma.org.uk
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News
Sarcoma Voices “Speak out!” Sarcoma Voices are people affected by sarcoma who want to get actively involved in helping us in our work to raise awareness and improve services and care. Hear from two of our Voices, Rob and Michael…
Rob Myers Patient representative The Sarcoma Clinical Reference Group (CRG)
The CRG sits within the NHS England structures responsible for commissioning NHS services. (Commissioning is the planning and purchasing of NHS services to meet the health needs of a particular population – in this case, sarcoma). The CRG is the primary source of clinical advice on the development of sarcoma services within the NHS and develops policies and specifications for how sarcoma services should be set up. Rob sits around the table with sarcoma clinicians, health service commissioners, and public health experts (and Sarcoma UK’s Chief Executive). He tells us more about the role and his motivation for getting involved.
The bone & soft tissue cancer charity
Michael Maguire
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“In November 2002 I was diagnosed with a Leiomyosarcoma in my left thigh which was treated with surgery and radiotherapy, unfortunately this was a high grade and very aggressive sarcoma and I was diagnosed with a secondary tumour 17 months later, which was removed by surgery without cause for further treatment. However that was not the end of my troubles as in 2008 I found myself, after a routine blood test, being treated for Prostate Cancer, which meant of course more surgery and further radiotherapy. I considered myself to be very fortunate to be alive and relatively well, and I felt the need to in some way attempt to help in the battle to defeat Connect
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this disease which affects so many people. After volunteering for patient participation work locally including co-organising a support group and sitting on the Merseyside Sarcoma Advisory Group, I applied for a place on the Sarcoma CRG which meets about four times a year. Rob Myers
Specific Clinical Reference Group. Whilst the work of the CRG is mainly clinical, I do feel very strongly that there is still value in the input of patients such as myself. My ambition is to take more away from cancer than it has taken from me, and whilst I am physically reduced, my life has been enriched by my new appreciation of the things that really matter. We should all take heart from the fact that cancer is now a very survivable disease and we have highly skilled and dedicated people working to increase survival rates even further. There is no reason why patients and patient organisations should not be at the forefront of this endeavour.”
Michael Maguire ”Consumer” Sarcoma Clinical Studies Group (CSG)
The Sarcoma CSG is a group dedicated to managing and The range of the work of the developing the UK clinical studies Group is quite wide. For example, portfolio for sarcoma patients. we recently contributed to a Clinicians, scientists and statisticians, consultation by the National all of whom are specialists in Institute for Health and sarcoma, come together Care Excellence about a to share information “We should new sarcoma quality about the trials standard which will they’re running and all take heart benefit sarcoma participating in, from the fact that and to discuss the patients. The first Clinical Reference cancer is now a very progress of research. Group meeting Michael gives us survivable of 2015 was an insight into what it is interesting joint event like in playing the role disease” with the Sarcoma Site of “consumer”. sarcoma.org.uk
News
“Unsurprisingly there’s lots of science, graphs and acronyms at the twice yearly meetings but that’s fine because that’s why the specialists are there; to review and report on what they’ve being doing and what’s been happening in relevant studies internationally and in other CSG’s and groups . I’m not a specialist, but that’s why I’m a member of the group as well. I’m there as a “consumer” (along with my colleague Robert) to represent the perspective of patients, carers and the public. Because amongst all the braininess in the room, which genuinely inspires my hope for the future, my point of view is helpful in the decision making that affects carers, like I was, and much more importantly, those with the cancer now and those who will have it in the future. What
“There are lots of science, graphs and acronyms at the meetings but that’s fine because that’s why the specialists are there”
News round-up Find out what’s been happening in the world of sarcoma and see how you can get involved! Sarcoma Quality Standard The National Institute for Health and Care Excellence (NICE) - who provide national guidance and advice to improve health and social care - has launched a new sarcoma quality standard. Our Chief Executive, Lindsey Bennister, provided input during the development of the quality standard which covers the diagnosis, treatment, support and follow-up of sarcoma in children, young people and adults in England. Lindsey said: “We welcome the introduction of this quality
standard for sarcoma. A key focus of the standard is on ensuring that people with sarcoma are treated by healthcare professionals with experience and expertise in treating sarcoma. We know that this is still a significant problem for many patients and we hope that this new quality standard will bring about the change needed to ensure that all sarcoma patients reach appropriate sarcoma specialist services.” Read the quality standard at nice.org.uk/guidance/qs78 Quality Performance Indicators for sarcoma in Scotland were launched in 2014. Visit healthcareimprovementscotland.org
The Big Research Conversation Last year, over 70 of you attended The Big Conversation in Birmingham. This year, everybody is welcome to join The Big Research Conversation, during Sarcoma Awareness Week, on Saturday 13 June 2015 in Manchester. Join us to hear Sarcoma UK’s researchers and scientists talk about their vital and ground-breaking work and to find out how you can get involved in research. The bone & soft tissue cancer charity
also inspires me is that across all the CSG’s in the UK, there are 50 patient/ carer “consumers” all helping to focus research on what patients need. Clinical studies may not be right for every patient but they are the best method we have of learning how to treat patients in the right way.”
Register your interest by emailing voices@sarcoma.org.uk or by calling on 020 7250 8271
To join Sarcoma Voices, visit our website sarcoma.org.uk/Voices or call us on 020 7250 8271.
For more information, visit their websites: • Clinical Studies Group csg.ncri.org.uk/ • Consumer Liaison Group crn.nihr.ac.uk/cancer/pcpie/ the-consumer-liaison-group sarcoma.org.uk
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Statistics
Osteosarcoma Public Health England’s Knowledge and Intelligence Team (West Midlands) continues its articles for Connect, with a specific focus on osteosarcoma in this issue.
O
males fluctuate around 3.0 per million males, which is significantly higher than the rate of 2.1 per million for females. The rate of incidence in women has been declining in recent years but the change is not yet large enough to be considered a significant trend (Figure 2).
steosarcoma is a very rare form of cancer which accounts for approximately 30% of all bone sarcoma diagnoses. Osteosarcoma is also known to be diagnosed in soft tissue.These tumours are referred to as extra-skeletal osteosarcoma. In England, between 2003 and 2012, 1,300 people were diagnosed with osteosarcoma.Of these, 756 (58%) were men and 544 (42%) were women. There were 149 new diagnoses of osteosarcoma in 2012 (Figure 1).
For the period 2003-2012 the majority of osteosarcomas were diagnosed in younger persons (age less than 25 years) with 671 (52%) diagnoses in this age group.The highest proportion of osteosarcomas is diagnosed in teenagers and adolescents between the
Osteosarcoma age-standardised incidence rates (ASIR) for Figure 1: Osteosarcomas in males and females in England 2003-2012
Female
10
Male
Age-specific incidence rates (per million population)
100
Figure 3: Age-specific incidence rates of osteosarcomas in England, 2003-2012
Number of diagnoses
80 60 40 20
7 6 5 4 3 2 1 0 0–4 5–9 10–14 15–19 20–24 25–29 30–34 35–39 40–44 45–49 50–54 55–59 60–64 65–69 70–74 75–79 80–84 85+
Diagnosis years Figure 2: 5-year rolling age-standardised incidence rates for males and females diagnosed with osteosarcomas, England 2003-2012
Age (years) Table 1: Osteosarcomas by cancer site in England, 2003-2012
3.5
Cancer site
3.0
Number
%
Bones of the lower limb
737
55.1%
2.5
Bones of the upper limb
137
10.2%
2.0
Bones of the skull and face
125
9.3%
1.5
Pelvic bones
113
8.5%
Undefined
102
7.6%
1.0
Ribs, sternum and clavicle
39
2.9%
0.5
Vertebral column
30
2.2%
0
Limb unspecified
17
1.3%
Extra-skeletal osteosarcoma
37
2.8%
1,337
100%
Diagnosis years Connect
• Sarcoma UK • Spring 20 15
2008 – 2012
Male
2007 – 2011
2006 – 2010
2005 – 2009
2004 – 2008
Female
2003 2007
Age-standardised incidence rates (per million population)
4.0
14
Male
8
0 2003 2004 2005 2006 2007 2008 2009 2010 2011 2012
Female
9
Total
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ages of 15-19 with 239 diagnoses (18%) arising specifically in this age category. The incidence of osteosarcoma is bimodal with peak incidence rates in teenagers and another peak in people aged 75 years and over. Osteosarcoma is the only variant of bone sarcoma to possess a bimodal attribute. The peak rate of osteosarcoma diagnoses in young people, and the rate at which it increases in adults, is significantly greater in men than it is in women (Figure 3). Osteosarcoma can arise in any anatomical location although it is most commonly diagnosed in the bones of the extremities (or limbs), with 55% of diagnoses in the bones of the lower limbs and 10% in the bones of the upper limbs (Table 1).
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Although osteosarcoma is most commonly diagnosed as a primary bone tumour, it can also be diagnosed in the soft tissue with 37 such tumours (around 3% of all osteosarcoma diagnoses) diagnosed between 2003 and 2012.
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Key facts • With an incidence of
approximately 130 tumours per annum in England, osteosarcoma accounts for approximately 30% of all bone sarcoma diagnoses.
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• Osteosarcoma incidence is
significantly higher for males than females, with peak incidence rates in teenagers (aged 15-19) and people aged 75 years and over. This is referred to as a “bimodal” incidence rate
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• Osteosarcoma is most
commonly diagnosed in the bones of the lower extremities (around 55% of all diagnoses) although they can be diagnosed in any bones of the human skeleton
• Occasionally, osteosarcoma
can be diagnosed in the soft tissue (extra-skeletal) with 37 cases diagnosed between 2003 and 2012
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