The bone & soft tissue cancer charity - Sarcoma UK · The bone & soft tissue cancer charity Winter 2015/2016 Leroy Duffus on the sarcoma community, role models and the power of positive

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sarcoma.org.uk

Winter 20 15/20 16The bone & soft tissue cancer charity

Leroy Duffus on the sarcoma community, role models and the power

of positive thinking

6 Carey’s campaignOur largest ever single appeal, raising over £80,000!

In the hot seatJeremy Whelan, Consultant Oncologist,interviewed7 Research changes lives

Research changed Pippa’s life.Help researchers find an answer sooner8

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Connect • Sarcoma UK • Winter 20 15/20 16 sarcoma.org.uk

Sarcoma UK’s key facts

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As we approach the end of the year, it gives us time for

reflection. 2015 has been a year of important progress in changing the sarcoma research landscape. In this year, Sarcoma UK reached the £1m mark in investment into sarcoma research.

We enjoyed meeting so many of you at our Talking Research event in June 2015 – supporters, scientists, clinicians involved in research – and giving you the opportunity to meet and talk to other people affected by sarcoma.

In this edition, sarcoma researcher Claire Turnbull reports on an exciting development in genetic research (see page 10). Sarcoma has been added to the international 100,000 genome project, a worldwide collaboration about cancer genetics. We’re delighted to be able to support her in her valuable work.

With your help this year, we’ve taken a big step forward in sarcoma research, funding more research than ever before. But this type of research is hugely expensive and we cannot fund it without the continued support of the sarcoma community and wider world. Sarcoma UK receives no funding other than donations from our supporters. We don’t receive support from other charities or companies towards our research programme. Pippa’s story on page 8 shows the impact research can have on individuals – it really does change lives. Our first ever research appeal, launched in November, gives you an opportunity to help us fund more research and to help people affected by sarcoma in the future. I do hope you will get involved.

Ultimately, we’re here to find a cure.

Thank you for your support.

Best wishes.

Sarcoma UK is the only charity in the UK focusing on all types of sarcoma. That’s our purpose; that’s why we are here.

Our mission is to increase knowledge and awareness of sarcoma through ground-breaking programmes that inspire involvement and transform the landscape for everyone affected by sarcoma.We are here to provide credible, high quality information about sarcoma to everyone affected by sarcoma. We are here to lend support and answer questions.

We are here to improve survival rates by promoting early diagnosis and ensuring all diagnosed patients are aware of their treatment pathway.

We are here to educate GPs and the public on the signs and symptoms of sarcoma so patients are diagnosed earlier.

We are here to ensure that patients are not alone during their diagnosis and treatment. By working with all members of the sarcoma community – patients, carers, supporters, health professionals and researchers – we share information and work collaboratively.

We are here to get sarcoma on the political agenda. We can empower patients through our Sarcoma Voices programme, to ask questions about this rare cancer and get their voices heard.

We are here to guide and inspire supporters to maximise their fundraising and show them exactly how we spend their money.

Ultimately we are here to find a cure for sarcoma. The research we fund adds to the knowledge base in sarcoma, provides evidence to support changes to practice, and supports potential breakthroughs to bring improvements to patients with this cancer.

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 main types:

1. Soft tissue sarcoma2. Bone sarcoma3. Gastrointestinal stromal tumours (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

• 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 general, patients with a bone or soft tissue diagnosis tend to be younger than the majority of cancer patients

Lindsey Bennister Chief Executive

• In Scotland, just 180 new cases of sarcoma are diagnosed each year

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

Statistics from the West Midlands Knowledge & Intelligence Team (Public Health England)

The most common sarcoma sub-types are:Soft tissue sarcomas

• Leiomyosarcoma• Fibroblasticsarcoma• Liposarcoma• Gastrointestinalstromaltumour(GIST)• Kaposi’ssarcoma(KS)• Angiosarcoma• Malignantperipheralnervesheathtumour(MPNST)• Synovialsarcoma• Rhabdomyosarcoma

Bone sarcomas• Chondrosarcoma• Osteosarcoma• Ewing’ssarcoma• Chordoma

sarcoma.org.uk Connect • Sarcoma UK • Winter 20 15/20 16

Wherever I lay my hat... creating Leroy’s placeTwoyearsagoLeroyDuffuswasdiagnosedwithsarcomainhisjaw.Here,hetalksaboutbeingtreatedata

sarcoma specialist centre; giving something back to the community; and his plans to drink lots of Guinness

in the New Year!

It was back in 2013 that I first noticed a swelling on my face – but you know what men can be

like, I just ignored it, thinking it would go away. It was only when close family and friends noticed it and told me about it that I thought I should go andseemyGP.Mydoctoractuallyreferred me to a dentist who then told me to go straight to the hospital. Reflecting back, my dentist must have known what it was.

After a lot of tests at the hospital, I was told that I had a ‘growth on the tissue’ in my face called sarcoma. This was a very difficult time, and I felt like I was treated more like an object than a person. No one spoke to me about sarcoma – I had no idea what sarcoma even meant – or gave me any relevant information about how it would affect me, and my life.

I am a positive person by nature. I am now being treated at a top Sarcoma SpecialistCentre.Forthefirsttimesince my diagnosis, this was where I felt like I was finally being treated likeaperson.Myconsultantsatmedown and explained everything, so I knew exactly what my options were.Heansweredallmyquestionsand reassured me about what they were going to do. As my tumour was high grade, I needed chemotherapy, followed by surgery. All my family and friends rallied around me when I started treatment, taking it in turns to come and sit with me.

Duringthisprocess,Ialsoreceived excellent support from the clinical nurse specialist. When the time came for my surgery

it went very well, a bone was actually taken from my leg to replace my jawbone. Although my face has lost some shape and feeling on one side, I actually don’t really notice on a day-to-day basis.

Since then the sarcoma returned in my sacrum (base of the spine). Surgery isn’t advised because of where the tumour is, so instead I underwent radiotherapy treatment. Currently the sarcoma is in my lungs and now I

am having on-going chemotherapy treatment, the tumour is steady,

meaning it has stopped growing.

I do a lot of community work in youth clubs and schools mainly with young people,

from around 14 to 19 years old, who are not in education or

employment and can’t seem to find their place in the system. I try to find something that will work for

Leroy Duffus

My story

3

them – it might be an apprenticeship or a scheme, everybody needs a bit of luck and encouragement, and I hope that in any small way I can provide that for them. Once I even took an under-achieving school from Peckham out to Jamaica to stay at a university out there. I think it is so important to provide strong black role models, not just rappers and musicians, but scientists and business people, too.

Sarcoma UK have been really valuable too, providing support and information for me. I often pop into their office to catch up with the team, and have a cup of tea. I am helping them to change the landscape of sarcoma.

Mydiagnosishasbeenlife-changing.I am looking forward to turning 50 next October, seeing my daughter pass her A-levels, and my son to do well in his GCSEs, and spending Christmas with my family. We are spending New Year in Ireland drinking rum – and Guinness, of course!

This whole issue has affected my lifestyle, my wife and two children – family and friends. I now speak to others, help out, give support, and fundraise for Sarcoma UK. I would love to film my story to inspire others, and let people know that they can be positive, no matter what happens. I am also planning to start my own family-run business, maybe a café or shop. I like the idea of creating a hub of the family, where people can come together and meet – and where I can also help other young people in my situation. I want to create something that will continue to create a community. You never know, maybe we’ll even call it Leroy’sPlace...

“This whole

issue has affected my family & friends.

So I now speak to others, help out and give something

back.”

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A BIG thank you to everyoneDressingastheSuperMarioBrothers;swimmingwithsharks;shavingoffyourhair;andofcoursedoingthe

Mobot–youhavebeenabusybunchthisyear.Here’s(justsomeof)your

year in pictures…

4

Fundraising

sarcoma.org.uk Connect • Sarcoma UK • Winter 20 15/20 16 5

Fundraising

View more at sarcoma.org.uk/fundraisers-gallery

020 7250 8271 [email protected]

Connect • Sarcoma UK • Winter 20 15/20 16 sarcoma.org.uk6

Carey smashes charity record!WhenCareyLander,keyboardplayerandvocalistforGlasgowbandCameraObscura,launchedherJustGiving

page for Sarcoma UK in August, she hoped to raise “a bit of cash to help others in a similar situation”. Within

weeks it had become our largest ever single appeal, with donations totalling over £80,000.

CareyLanderlaunchedherrecord-breaking fundraising appeal following the

announcement in August that her osteosarcoma had returned. Usually a very private person, the musician had not spoken publicly at the time of her initial diagnosis in 2011. But, being acutely aware that the disease mostly affects teenagers and young people, she finally decided to share her story to raise money for Sarcoma UK, in the hope that “in the future … children don’t have to undergo such awful treatment and have a better chance of survival.”

Almost as soon as she launched her appeal, friends in the media and music industry, as well as thousands of fans, rushed to spread the word and post links to her JustGiving page. On Twitter, the celebrities endorsing her campaign included actors Zooey DeschanelandMollyRingwald;broadcastersDermotO’Leary,LaurenLaverneandGeoffLloyd;andwritersJonRonsonandCaitlinMoran.

Before she passed away, Carey saw her target of £50,000 surpassed, and at the time of writing, the total raised now stands at over £80,000. That her appeal galvanised so much support in such a short space of time is testament to indie music lovers’ affection for Carey and her bandmates. While fans on social media shared photos taken backstage at concerts around the world, donations came flooding in from over 40 different countries, a rare achievement according to

JustGiving.

Fundraising

Carey grew upinMaidstone,

Kent with her parents Eileen and Bob, and her brothers Nathan and Ross. She moved to Glasgow as a teenager, later studying English at the University of Strathclyde. Already a talented musician and fan of the band, she seemed like the obvious choice when Camera Obscura were looking for a new keyboard player in 2002. She was thrown in at the deep

end: her first gig was a session for BBCRadio1atlegendaryDJ

John Peel’s house.

Before long, the band’s country-tinged guitar pop sound was transforming, and lead singer Tracyanne

Campbell recalls listening to mixes of their next

album, finding “her piano, her keyboards, were all over them.”

In the 13 years after she joined, the band released four more albums and appeared frequently on BBC radio, recording another four sessions

for John Peel, and also playing in thestudioforDermotO’LearyandLaurenLaverne.Theytouredextensively, playing concerts on five continents, and it was on tour that Carey met her partner Kenny, the band’s sound engineer, who she lived

with in the west end of Glasgow.

In addition to her musical talent, Carey also brought vintage glamour to the band; with her horn-rimmed spectacles and love of ‘granny chic’ she was a compelling presence on the

stage. A self-confessed make-up obsessive, she made red lipstick

and Chanel No 5 her trademarks. Herclosefriend,thebeautycolumnistSaliHughes,hasdescribedhow she once packed eight lipsticks for a hospital stay, and got into trouble with doctors for painting her toenails after an operation on her leg, making it trickier for them to check her circulation.

Carey’s bandmates have described her as a bookworm (her childhood ambition was to be a librarian) with a dry wit, a talent for self-deprecation and a prodigious appetite; on the band’s website she states that her favouritewordis‘dinner-time’.Herquiet and incisive sense of humour undoubtedly endeared her to the huge number of friends and fans who joined her family in responding to her very personal appeal for Sarcoma UK.

Bob and Eileen updated her JustGiving page after she passed away, saying, “As Carey’s parents we have been deeply moved by all the gifts and messages on this page. They have brought real comfort to us. Please keep spreading the word and keep giving.”

justgiving.com/carey-lander

Carey was

thrown in at the deep end: her first

gig was a session for BBC Radio 1 at

legendaryDJJohnPeel’s house.

Carey Lander


Meet Jeremy WhelanProfessorJeremyWhelanisaConsultantMedicalOncologistatUCLH,ChairofNHSEngland’sSarcomaClinicalReference Group, and is particularly renowned for his work with young people with sarcoma.

Why did you choose to specialise in caring for patients with sarcoma? Duringthelatterpartofmymedicaltraining I was struck by my experience of caring for young people with cancer, and how poorly many of their needs were being met. Then when I treated young patients with sarcoma it was clear their needs were even more poorly met, because sarcoma was a rare cancer that people simply didn’t know enough about. I was drawn to complete my training atMiddlesexHospitalwherethe right messages were already coming through – where there was both a concentration of sarcoma expertise and a growing concentration on the needs of young people.

You are now widely known for your research into teenage and young adults with cancer. How do we better treat and support this group of patients? NICE Improving Outcomes Guidance, which lays down the multiple elements of care and service that patients should receive, has had a very significant impact on care for young people – the days when one or two teenagers were stuck on an adult ward has virtually ceased. There is still a lot to be achieved for young people, however. We are still bad at diagnosing cancer in that age group in a timely manner – it’s disappointing that we haven’t been able to get more resources allocated to researching that area in comparison with the efforts that have gone into earlier diagnosis of more common cancers.

Jeremy Whelan

The second aspect is that there are certain diseases that occur in that age group where the outcomes are really not good enough, and unfortunately sarcoma is among them. This is particularly significant because of course sarcoma occurs in young people, and indeed those under 40 years old, proportionately far more than many other cancers.

How would you sum up the main changes in the treatment of sarcoma since you were appointed a Consultant at UCLH in 1996? Sarcoma services are now far more organised and centralised than they were then. The impact of this has been that more patients are being seen by sarcoma specialists, resulting in a better care experience, including access to more up-to-date treatments.

Oncologists are on the front line of treating advanced disease. How challenging is it to deal with this and stay positive? MostdaysI’mpretty pleased to be at work! I’ve always been very grateful to have the opportunity to work in this field. We all have frustrations but we also have got things that we can turn to as successes and which provide our motivation.

If you could bring about an improvement in one area of sarcoma care, what would it be? The one improvement I’d like to see

would be better survival for patients with osteosarcoma and Ewing’s sarcoma achieved through less toxic treatment.Developingnewdrugsis at the heart of achieving that, as is gaining a better understanding of what makes one type of osteosarcoma differ from another. Getting inside the biological box of sarcoma and fishing out knowledge that can be translated into new therapeutics is proving an enormous challenge.

What do you forsee as the major developments in sarcoma treatment in the next 10 years? I would expect to see a greater degree of centralised specialist care in the future, supported by a stronger and better governanced link to more localserviceproviders.Myhopeisthat the services provided for patients with sarcoma will be better, and as good as they can be. That’s not to say they’re not good at the moment, because there are areas of excellence, but they’re not consistent. We have variation across the country

and I’d like to see that variation minimised and a much

greater proportion of patients having access

to excellence.

The second thing I would hope for is the greater application

of precision medicine for the individual with

sarcoma. That is already coming to some extent;

clinical scientists and biologists have made huge strides in unravelling the tangle of sarcoma, particularly of soft tissue, so we can discern one from another and understand more about why one is discernible from another and then understand what therapeutic implications that will have.

“Duringmy

medical training I was struck by my experience

of young people with cancer, and how

poorly their needs were met.”

ResearchIn the hot seat


Research

Research changes lives. Research changed Pippa’s lifeWe’re asking you to donate £10 a month to help researchers find the answers sooner.

Every day researchers across the UK are working tirelessly towards better treatments and,

eventually, a cure for sarcoma.

“Likemost15-year-olds,Ithoughtthat cancer was something that happened to older people,” says PippaHatch.

“I had certainly never heard of sarcoma cancer. That all changed when I was diagnosed with a soft tissue sarcoma in my stomach.

“The surgeons removed the large tumour, taking two-thirds of my stomach with it. I recovered well and it wasn’t long before I was eating as normal and was back at school, studying for my GCSEs. All thanks to the wonders of modern medicine and some expert surgeons.

“The following year, a checkup revealed new tumours in my lung and stomach that were more difficult to locateandremove.Luckilyformethere was a new chemotherapy drug, Glivec, which my specialists decided to try. The new chemotherapy blocked the specific signals that were triggering the tumours to grow.

“Fiveyearsonsincemydiagnosisand another operation to remove the tumour, I have more welcome news this Christmas – I’ve just given birth to my first child, Oscar.

“I’m here because of wonderful researchers and consultants, whose amazing work meant I could access the newest and most effective treatments. I am living life to the full, although living with the uncertainties that go with this rare form of cancer.”

Glivec, or imatinib as it is also called, was discovered in a laboratory research programme and was found initially to benefit patients with a type

of leukaemia. The breakthrough

for patients with Pippa’s type of sarcoma, gastrointestinal stromal tumour, came in 2000. Since then, thousands of patients have been treated successfully with the drug.

“I’m

here because of researchers, whose work

meant I could access the newest and most effective treatments.”

Oscar is welcomed into the world


Research

Research changes lives. Research changed Pippa’s lifeWe’re asking you to donate £10 a month to help researchers find the answers sooner.

Sue has been giving to Sarcoma UK regularly for years: “When my sister was diagnosed with liposarcoma we were all devastated and more than a little lost; we’d never heard of sarcoma, let alone liposarcoma, before she got her diagnosis. What was it?! What were the different types? What would this would mean for her? Finding out about it was not easy, especially if we wanted to avoid horror stories on the internet. We wanted to make sure that everyone’s GP was as informed about sarcoma as my sister’s GP was.

We’ve been so lucky, my sister received the most fantastic care – from her GP, her oncologist and her fabulous surgeon. Three years later she is well and I still have my amazing sister. I wanted to be able to give a little back to say ‘thank you’ for all the wonderful care she received. Making a small donation to Sarcoma UK every month seemed the obvious thing to do to support this small and creative charity, so that they can continue to increase awareness of sarcoma with GPs and other health professionals, the general public, support invaluable clinical research as well as providing practical support to anyone who is diagnosed with sarcoma.”

Your donations have already helped so many people, just like Pippa, to lead long and full lives, but there are still many questions to answer before we find a cure for sarcoma.

There simply isn’t enough funding for sarcoma research at the moment. Across the country sarcoma researchers work tirelessly to find answers, leading to better treatments, and, ultimately, a cure. With your help, that time will come so much sooner.

By donating £10 a month, you will not only be helping sarcoma researchers right now, but also in the weeks, months and years to come. Because, as a regular giver, you will be helping us to plan for the future, meaning we can commit to bigger grants and fund more and more research projects.

You can join the club and return the form on the back page. We can’t thank you all enough for this incredible support, which will truly transform the landscape for everyone affected by sarcoma.

Thank you for all of your continued support.

Unfortunately, Glivec doesn’t

always work for everyone and

that’s why the search continues

for new drugs.

Researchers have more breakthroughs to make before

people like Pippa (and others affected by sarcoma) can stop living with uncertainty. With your help, huge advances have already been made, but we still have many unanswered questions about sarcoma.

Can you donate £10 a month to help researchers find the answers sooner?

You can make a one-off donation or change the monthly amount – everything counts. Return the standing order slip at the back of

Connect, or go online sarcoma.org.uk/Pippa020 7250 8271

The Hibberdine family


Research

sarcoma.org.uk

Clare Turnbull: researcher and clinical geneticist Thanks to your donations, there’s been lots of exciting things happening in the world of sarcoma research. This issue: Clare Turnbull talks genetics; we reveal this year’s new research grants; and we welcome two new members onto our Research Advisory Committee.

What’s your background? I work as a clinical geneticist as well as a researcher. I see families in clinic who have patterns of cancer that suggest a genetic susceptibility running through the family. We look back through the family history to see if there is an unusual number of people with cancer or an unusual group of cancers in the family. We work with these families to understand the

underlying cause of the pattern of cancers in the family through investigations and genetics testing.

I’m quite fortunate as my clinical work and my scientific work

arequitecloselyrelated.Myclinical work enables me to test patients and families for genes we know about; my research work is around looking for new genes and genetic changes that increase

the risk of cancer developing. There is real crossover between my clinical and research work. This helps to recruit the families I see in clinic to research studies when routine clinical testing was unable to answer what gene changes were causing their disease.

How did you get into sarcoma research? FormanyyearsIhavebeenlookingat genetic susceptibility to different

“We hope to identify new

genetic changes which will tell us more

about why people develop

sarcoma.”


Research

11

cancer types, including breast cancer, ovarian cancer, and testicular cancer. As the technologies have developed, it has become possible to revisit long standing areas of interest with better tools.

Sarcoma is a cancer that clearly has strong genetic susceptibility. Howevertherearesomecasesthatsuggest unexplained susceptibility to sarcoma. As advances in genetic technologies develop, there are new opportunities to look and see if we can find additional genes that cause susceptibility to sarcoma and cause sarcoma to run in families. With multiple sub-types and poor prognosis, I wanted to find out more about the genetic causes.

What is your research project looking at? We’re looking to recruit patients who’ve had a sarcoma and an additional cancer and looking at the genetic mutations in these patients. By studying patients who have had another cancer as well as a sarcoma, we’re aiming to identify genes which confer an inherited susceptibility to sarcoma.

We’re using a technique called Next Generation Sequencing, which has come into use over the last five years. This technology has totally changed what we can do in terms of studying genomics in a normal laboratory. Instead of having a narrow a research question where we look at a couple of specific genes or specific mutations, Next Generation Sequencing allows us to chop up and sequence thousands of genes at one time from a single blood sample. In fact, in one single sequencing run, we can look at all 20,000 genes in one go: this is called ‘the exome’. The sequencer generates huge amounts of data and we work alongside statisticians and bio-informaticists who process the images from the sequencers into data files. We can analyse the data to look for mutations in the genes.

The sequencing technology is also increasingly being used to deliver clinical testing within the health service. It is a great example of bench

to bedside research technologies.

You’re nearly a year into your project, how’s it gone so far? Because we are using human samples, we have had to get ethical approval for the study. With ethical approval in place, we could then move on to opening the study inNHShospitals.Thisinvolvesgoing through the Research &

Developmentdepartmentsof individual hospitals.

We’ve now got a dozen hospitals

on board with more getting approval. We’ve focused on working with collaborators

from specialist sarcoma

centres and clinical genetics

departments because these are the clinical centres in

which the patients we are looking to recruit might be seen.

What would be the main benefit to patients? We hope to identify new genetic changes which will tell us more about why people develop sarcoma. This may identify new genes to test for in the clinic. By better understanding the genetic changes underlying development of sarcoma in an individual patient, we are able to give more information to families around the likelihood of other people in the

family developing sarcoma or other cancers.

The science is a long way away from giving people a “percentage” that they might develop a sarcoma, but the more we understand about genetic susceptibility, the more we can move towards individualised risk data rather than using a general epidemiological population risk.

You are also involved in the 100,000 genome project, what does this mean for sarcoma patients? Sarcoma has just been added to the list of tumour types included in this project. This is a great opportunity for the sarcoma research community as a whole and I’m excited to be part of this. We’ll be recruiting patients who’ve had sarcoma from our genomic medicine centres across England. We’ll get blood and tumour samples from them and we’ll be able to sequence the whole genome to give a better understanding of genomic changes in the tumour and how these relate to the development of disease.

We’re also looking to bring these great technologies into clinical care and give direct benefit to patients in an NHSsetting.Thisprojectisafantasticopportunity to bring research and clinical care together whilst also bringing patients the best care.

For more insight into our current research projects visit sarcoma.org.uk/research

“Myclinical

work enables me to test patients and families

for genes we know about; my research work is around looking

for new genes and genetic changes that increase

the risk of cancer developing.”

New RAC MembersSarcoma UK are delighted to welcome Professor Ted Hupp and Mr Anant Desai to our Research Advisory Committee.

Professor Ted Hupp Mr Anant Desai


Research

2015 Grants awarded

In this pilot project, we want to investigate if we can culture specific cells in the lab to carry magnetic nanoparticles. We can switch these cells ‘on’ and use a treatment called magnetic hyperthermia to kill the sarcoma cells. We hope this will advance clinical studies towards a new treatment for sarcomas.

Professor Donald Salter, University of Edinburgh. Development

of magnetic nanoparticle bearing mesenchymal stem cells

for magnetic hyperthermia treatment of sarcomas.

Dr Richard Martin, Aston University. Developing and

characterising novel bioactive materials to selectively induce

osteosarcoma cell death and simultaneously enhance bone regeneration.

Dr Gareth Veal, Newcastle University, Northern Institute for Cancer

Research. An investigation into the impact

of pharmacogenetic variation on clinical response and toxicity in patients treated with gemcitabine, docetaxel and doxorubicin on the GeDDiS trial.

Dr Henning Wackerhage, University of Aberdeen. Causes and

therapeutic implications of YAP activity in embryonal

rhabdomyosarcoma.

Prof Adrienne Flanagan, UCL. To investigate the utility of

PRC2 complex mutations as biomarkers for malignant peripheral nerve sheath tumours.

Dr Chryso Kanthou, University of Sheffield. Neuropilin-1 (NRP-1) and

VEGF isoforms as major players in sarcoma response to vascular-targeted therapies for cancer.

This project aims to develop new bioactive materials for patients suffering from bone cancer. The material will release Gallium, Calcium and Phosphorous which will encourage tumour cell death whilst growing new bone. It also contains antibacterial agents. It is anticipated it will enhance blood flow and reduce healing time for patients.

This project is looking at variations in genes that control how fast drugs are removed from the blood stream and what happens to the drugs in the body, using samples collectedfrompatientsontheGeDDiStrial.Thismayhelpdetermine the likelihood of which patients respond well to individual drugs, and which patients may experience toxicity following treatment. It is hoped that the findings from the study will help how future patients can be treated most effectively, with minimal side-effects.

This project examines the role of YAP (a protein) in rhabdomyosarcoma,lookingatwhetherchangesinDNAsequence found in patients with rhadomyosarcoma activate YAP. It will test if the anti-cancer effects to reducing YAP are also found when YAP inhibiting drugs are used. The research will also study drugs that inhibit YAP in rhabdomyosarcoma as a potential treatment.

For more insight into our current research projects visit sarcoma.org.uk/research

This project has two aims; the first is to look if a newly discovered set of mutations are found in a bio-banked set ofmalignantperipheralnervesheathtumours(MPNST)-sarcomas which originate from peripheral nerves - and see ifthemutationsarespecifictoMPNST.ThiscouldhelpwithdiagnosingMPNST,whichisoftenmistakenforothertumours.

The second aim is to look at a blood test for genetic mutationsfoundinMPNST.Thiswillseeifthereisanycorrelation between results and patients with tumour recurrence. This could lead to a blood test for early detectionofaMPNSTrecurrence.

This project is looking at why certain drugs which block oxygen supply to sarcoma tumours work for some and not others. The team will look at two proteins made by cancer cells and see if they can be used to predict the way a sarcoma will react to these drugs. This would help to see how effective the drugs will be to give to a patient before

treatment.


Support & information

13

Living well with sarcomaHindquarteramputeeJanineJacksononjet-settingaroundtheworldand

how to make returning to work a positive experience.

Janine was diagnosed with pleomorphic sarcoma of the pelvis inDecember2004.Shehadfour

rounds of chemotherapy before having a hind-quarter amputation to her left side in June 2005. Janine talks about how her diagnosis and treatment affected her career as a secondary school English teacher.

“I had been struggling with back pain for quite some time before I got my diagnosis. When I was told I had sarcoma I decided that I wanted to resign from teaching. I did not think it was fair to the school to be absent during my treatment as it had just comeoutofspecialmeasures.Myhead teacher refused my resignation. She was very supportive and said she would aid my return to work as and when that happened.

I didn’t work for the rest of 2005 but started a ‘phased return’ in 2006. By September 2006 I was back to working my part-time contract as an English teacher. At first, I was put in an accessible classroom on the ground floor. Unfortunately, this was far away from the other English classrooms on the first floor and I felt isolated to be away from the rest of my department. I was then moved to a classroom on the first floor with only one set of stairs to negotiate. I did struggle to access the toilet so a disabled toilet was installed on the first floor to make things easier for me. The school used Access to Work to advise them on reasonable adjustments that would help me. They didn’t offer any financial

ability to work and understand what adjustments you might need.

Reasonable adjustmentsIf you are at a substantial disadvantage in the workplace because of your sarcoma your employer is required to make reasonable adjustments to your workplace and their working practices.

Some examples of a reasonable adjustment can include:• Giving you time off to go

to medical appointments or for rehabilitation such as physiotherapy sessions

• Changing your job description to remove tasks that cause problems or temporarily allocating some of your work to a colleague

• Allowing you to work more flexible hours

• Changing where you work, for example, moving you to a ground floor office

• Allowing you to return gradually after a long period of time off work. This is known as a ‘phased return’.

Janine is a member of Club HQ: A free support group for hindquarter amputees, offering information, mentoring support and annual get-togethers to share and discuss experiences. Phone 0113 258 5934 for more details

assistance but having Access to Work involved did help to raise awareness with my colleagues.

In some ways my life has changed because of my diagnosis and treatment of sarcoma but in other ways I am not allowing it too. I still travel - I have visited New Zealand, SingaporeandLosAngeles-andIenjoy kayaking. I have taken part in a 750 metre open water swimming race raising £2,500 for Sarcoma UK. I also did the swimming leg of a half paratriathlon raising money for the charity Sport Able.

I left the classroom in 2012 and I now work as a private tutor from home. I also return to my old school to teach small classes of GCSE pupils. I’m able to do what I love without the physical strains of classroom teaching.”

Returning to workReturning to work after treatment for sarcoma should be a positive experience. You may have concerns about going back too soon and feeling unwell again but proper planning and management will help you return safely. Before you are fit and well enough to return, you should consider how your condition affects your

Further informationEngland, Scotland and Wales• AccesstoWork

gov.uk/access-to-work• FitForWork

fitforwork.org 0800 032 6235

Scotland• fitforworkscotland.scot

0800 019 2211Northern Ireland• EqualityCommissionforNI equalityni.org

028 90 500 600• Labour Relations Agency

(LRA) NI www.nidirect.gov.uk/labour-

relations-agency 028 90 321 442

Or contact us 020 7250 8271 [email protected] sarcoma.org.uk/rehabilitation

Janine completes 750m Open Water swim at Dorney Lake


GP education

14

We’ve been talking to GPsSarcoma UK has taken a big step forward in our work to help GPs recognise the signs of sarcoma. This builds on the success of our On the Ball Campaign last year, where over 1,600 of you personally gave our ‘Is it sarcoma?’ golf ball to your own GP.

Working in partnership with BMJLearning,whoprovideeducation materials and

events for doctors and GPs, Sarcoma UK has given every GP in the country free access to an online training module: Lumps, Bumps and Sarcomas. Over 2,000 GPs have completed the module since April 2015.

We wanted to hear what GPs themselves think are the barriers to early diagnosis of sarcoma, and what they need to help break down these barriers. We set out on a journey from LondontoGlasgowviaBirminghamandManchester,tomeetGPsface to face and talk to them about sarcoma,ataseriesofBMJGPMasterclasses.

Duringthistime,wespoketoaround300 individual GPs about sarcoma.

What we heard• It is often said that GPs will only

see one case of sarcoma in their working life, and statistically this is true.However,overahalfofthosewe talked to had seen a sarcoma in their practice and one GP had even diagnosed four sarcomas!

• GPs would like more information and help with how to diagnose sarcoma, and what tests are appropriate.Mostwereunsureof the official routes to sarcoma diagnostic services or sarcoma specialist centres. This means there is no consistency for sarcoma patients and often results in them getting ‘lost’ in the system, causing delays.

• GPs are very concerned about missing sarcoma or not referring early enough. They are keen to learn as much as possible about the signs and symptoms of sarcoma. The Sarcoma UK golf ball and diagnostic tool flew off the exhibition stand.

At a special GP training event in Birmingham in October, Sarcoma UK trustee Professor Rob Grimer gave an inspiring talk to GPs about why

You can help us raise awareness by taking our On the Ball pack to your own GP. Order your pack on our website or call us on 020 7250 8271.

The module was written by orthopaedic surgeon, Mr Chandrasekar from from Liverpool Sarcoma Service/ Royal Liverpool & Broadgreen University Hospitals Trust.

early diagnosis of sarcoma matters. HetoldGPsthatmostsarcomasarediagnosed when they are the size of a baked bean tin. If they are diagnosed when they are the size of a golf ball, it would save many lives. A simple and effective message!

Sarcoma Specialist Centres: Soft Tissue

Sarcoma UK is the only cancer charity in the UK focusing on all types of sarcoma

We provide resources & programmes to help GPs and health professionals understand more about sarcoma.

Diagnostic Tool – is it soft tissue sarcoma?All patients with suspected/diagnosed soft tissue sarcoma

refer to a Sarcoma Specialist Centre.

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

Clinical presentations

Lump bigger than a golf ball (>4cm)

Lump increasing in size

Deep to the fascia

Note: MRI is more effective for investigating large deep lumps.

MRI & biopsy (fine needle) should only be performed under the direction of a sarcoma specialist centre.

Adults • Refer for urgent ultrasound (performed within

2 weeks)

• Refer for urgent appointment (within 2 weeks)

to a sarcoma specialist centre if scan suggests

soft tissue sarcoma or if findings are uncertain

and clinical concern remains

Children • Refer for very urgent ultrasound (performed

within 48 hours)

• Refer for very urgent appointment (within

48 hours) to sarcoma specialist centre if scan

suggests soft tissue sarcoma or if findings are

uncertain and clinical concern remains

1. North of England Bone & Soft Tissue Tumour Service

Newcastle Teaching Hospitals NHS Foundation Trust

2. Greater Manchester & Oswestry Sarcoma Service (GMOSS)

Robert Jones & Agnes Hunt Orthopaedic Hospital Oswestry,

Manchester Royal Infirmary, The Christie NHS Foundation

Trust Manchester

3. Liverpool Sarcoma Service Royal Liverpool & Broadgreen University Hospitals Trust

4. Leeds Regional Sarcoma Service Leeds Teaching Hospitals NHS Foundation Trust

5. Sheffield Sarcoma Unit Sheffield Teaching Hospitals NHS Foundation Trust

6. Royal Orthopaedic Hospital NHS Foundation Trust

Birmingham

7. The Midlands Abdominal & Retroperitoneal Sarcoma Unit

University Hospitals Birmingham NHS

Foundation Trust

8. East Midlands Sarcoma Service Nottingham University Hospital NHS Trust, Leicester

Royal Infirmary

9. The Oxford Sarcoma Service (OXSARC)

Nuffield Orthopaedic Centre

10. Bristol Sarcoma Service North Bristol NHS Trust

11. Exeter Sarcoma Service Royal Devon & Exeter NHS Foundation Trust

12. Plymouth Hospitals NHS Trust

13. The London Sarcoma Service University College London Hospitals NHS

Foundation Trust, Royal National Orthopaedic

Hospital NHS Trust

14. The Royal Marsden Hospital London

15. South West Wales Sarcoma Multi-Disciplinary Team South West Wales Cancer Network

16. North Wales refer to Greater Manchester & Oswestry

Sarcoma Service

17. Northern Ireland Local Sarcoma Cancer

Committee Musgrave Park Hospital, Belfast City Hospital,

Royal Victoria Hospital, Mater Hospital Belfast,

Ulster Hospital, Dundonald

Investigations

[email protected]

sarcoma.org.uk

020 7250 8271

49-51 East Road, London N1 6AH The bone & soft tissue cancer charity

Further information• NICE Guidelines for Suspected Cancer (2015)

• NICE Guidelines for Sarcoma (2006)• British Sarcoma Group guidelines

• sarcoma.org.uk/health-professionals/sarcoma-specialist-centresSarcoma Specialist Centres: Bone

Sarcoma UK is the only cancer charity in the UK focusing on all types of sarcoma

We provide resources & programmes to help GPs and health professionals understand more about sarcoma.

Diagnostic Tool – is it bone sarcoma?All patients with suspected/diagnosed bone sarcoma refer to a Sarcoma Specialist Centre.


Clinical presentations

Bone pain, particularly at night Mass/swelling Restricted movement in a joint

1. North of England Bone & Soft Tissue Tumour Service Newcastle Teaching Hospitals NHS Foundation Trust2. Greater Manchester & Oswestry Sarcoma Service (GMOSS) Manchester Royal Infirmary, The Christie NHS Foundation Trust,Robert Jones & Agnes Hunt Orthopaedic Hospital Oswestry3. Royal Orthopaedic Hospital NHS Foundation Trust Birmingham4. The Oxford Sarcoma Service (OXSARC) Nuffield Orthopaedic Centre, Oxford5. The London Sarcoma Service Royal National Orthopaedic Hospital NHS Trust, University College London Hospitals NHS Foundation Trust6. North Wales

refer to Greater Manchester & Oswestry Sarcoma Service7. Northern Ireland Local Sarcoma Cancer Committee Musgrave Park Hospital, Belfast

Note: Radiographs may be normal in patients with early bone sarcoma.

Adults • Refer for urgent x-ray (performed within 2 weeks) • Refer for urgent appointment (within 2 weeks) to a bone sarcoma specialist centre if x-ray suggests bone sarcoma or if findings are uncertain and clinical concern remains

Children • Refer for very urgent x-ray (performed within 48 hours) • Refer for very urgent appointment (within 48 hours) for specialist assessment at a bone sarcoma specialist centre if an x-ray suggests bone sarcoma or if findings are uncertain and clinical concern remains

Investigations

[email protected]

020 7250 8271

49-51 East Road, London N1 6AH

The bone & soft tissue cancer charity

Further information• NICE Guidelines for Suspected Cancer (2015)• NICE Guidelines for Sarcoma (2006) • British Sarcoma Group guidelines• sarcoma.org.uk/health-professionals/sarcoma-specialist-centres


News

News round-upThe Boom Foundation raise £57,000 in one night!

460 people attended the Boom Gala Ball 2015, at the Titanic Belfast.

Boom was set up in memory of Philip Wilson, by a committee, and hisfiancé,Leona.Allmoneyraisedby Boom is split between practical helpandvitalresearch.Fiftypercent remains in Northern Ireland to be used for the benefit of sarcoma patients in NI, whilst the remaining half are sent to Sarcoma UK to try to achieve the best possible standard of treatment and care for patients with sarcoma.

VickiSmith,ourDirectorofFundraisingsaid:“WearesogratefultoworkinpartnershipwithLeonaand Boom. A fantastic, celebratory night was had by all, in the most spectacular venue and we would like to thank everybody for all of their generosity and kindness.”

To date, Boom have raised £75,000 for Sarcoma UK – making a huge impact on everyone affected by sarcoma.

Sarcoma UK Support Line

InFebruary2016weareexcited to launch the Sarcoma UK SupportLine.

Manypatientsandfamiliestell us they find it

difficult to source high quality

support and information. We’re here to change that. Sarcoma UK is here for every person affected

by sarcoma, contact us for

more information.

Our support line is confidential. It is run by our Specialist Sarcoma Nurse and our HeadofInformationandSupport.

We believe no question is a silly question. You can ask all the questions you need answers to. Whether it’s about diagnosis, treatment, or care, we don’t mind what the question is.

Board of TrusteesDrJaneBarrettKarenDelinProf Rob GrimerLeighHibberdineIanHughesSharon ReidHelenStradlingDaveThompsonDrJeffWhiteSam WhittamGlyn Wilmshurst

Founder Roger Wilson CBE

Medical/Scientific Advisor Prof Ian Judson

Patron RichardWhiteheadMBE

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.


Editorial and production teamEditorial: Vicki Smith, Glyn Wilmshurst and Alice SnapeDesignandlayout:INQDesignLtd02077375775

sarcoma.org.uk

020 7250 8271

[email protected]

@Sarcoma_UK

uk.sarcoma

49-51 East Road, London N1 6AH

We lend a listening ear. You can just ring to talk through what is happening with you. There are no time limits to the call, we want to offer an empathetic listening ear. The service is open to anyone with concerns about sarcoma, including patients, families, friends and health professionals.

We can point you in the right direction. We can help you understand what might happen at a next appointment. We are also able to explain how and where you should be referred for specialist advice and care.

Sarcoma UK is part of a caring community of patients, carers, health professionals, researchers, and a wide group of supporters. We want you to feel part of that community, to feel that you have access to other patients going through a similar journey. We can put you in touch with others in local sarcoma support groups or in online support groups.

[email protected] sarcoma.org.uk/ support-information

Boom founder Leona attempts the Charleston with her brother

Donate!We rely solely on your voluntary donations to raise sarcoma awareness,

fund research and provide support & information.

Researchers have more breakthroughs to make before people affected by sarcoma can stop living with uncertainty. With your help, huge advances have already been made, but we still have many unanswered questions about sarcoma.

Can you donate £10 a month to help researchers find the answers sooner? sarcoma.org.uk/donate

Return the form below

Thank you!

Or make a donationBy Text: Text SAUK00 £10 to 70070Minimumdonations£1 and maximum donation is £10. Gift Aid can also be added.

By cheque: Makepayableto Sarcoma UK and post to Sarcoma UK, 49-51 East Road, London, N1 6AH

By Bank: LloydsTSBAccount name: Sarcoma UKSort Code: 30-97-62Account No: 02884274Reference: Your name

sarcoma.org.uk/donate

I’d like to help researchers find the answers sooner.To register, please fill out both forms. Form A should be returned directly to your bank (or you may be able to do this online), and Form B to us at: Sarcoma UK, 49-51 East Road, London, N1 6AH. Form B notifies us that you have set up a standing order gift, and allows us, if applicable, to claim Gift Aid from your donations.

I wish to set up a regular Standing Order in favour of Sarcoma UK.

Please make a first payment of £ on

and thereafter a similar payment *monthly/quarterly/annually

until *further notice /the following date

Payee: Sarcoma UK Sort code: 40-52-40 Account no: 00019763Bank: CAF Bank Ltd Branch: 25 Kings Hill Avenue, West Malling, Kent ME19 4JQ

Signed Date

To the Manager:

Address:

Account name:

Sort code:

Account no:

Bank name

Postcode

Form

A

*please delete as appropriate

I have set up a regular donation to Sarcoma UK by Standing Order

of £ per *month/quarter/year

Please treat all donations I make to Sarcoma UK, until I notify you otherwise, as Gift Aid donations. I confirm I have paid or will pay an amount of Income tax and/or Capital Gains Tax for each tax year (6 April to 5 April) that is at least equal to the amount of tax that all the charities or Community Amateurs Sports Clubs (CASCs) that I donate to will reclaim on my gifts for that tax year. I understand that other taxes such as VAT and Council Tax do not qualify. I understand the charity will claim 25p of tax on every £1 that I give or have given in the last four tax years.

Signed Date

Name:

Home address:

Postcode:

Telephone:

Email:

Title First name Surname

Form

B

*please delete as appropriate

Documents

The bone & soft tissue cancer charity - Sarcoma UK · The bone & soft tissue cancer charity Winter 2015/2016 Leroy Duffus on the sarcoma community, role models and the power of positive