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The bone & soft tissue cancer charity
Winter 20 15/20 16
Photo: Alison Romanczuk
Leroy Duffus
on the sarcoma community, role models and the power of positive thinking
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Carey’s campaign Our largest ever single appeal, raising over £80,000!
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In the hot seat
Jeremy Whelan, Consultant Oncologist, interviewed
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Research changes lives Research changed Pippa’s life. Help researchers find an answer sooner
Sarcoma UK’s key facts
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 sarcoma 2. Bone sarcoma 3. 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
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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 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
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s 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.
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 • 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
sarcoma.org.uk
My story
Wherever I lay my hat... creating Leroy’s place Two years ago Leroy Duffus was diagnosed with sarcoma in his jaw. Here, he talks about being treated at a sarcoma specialist centre; giving something back to the community; and his plans to drink lots of Guinness in the New Year!
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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.
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.
Photo: Alison Romanczuk
t 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 and see my GP. My doctor actually referred me to a dentist who then told me to go straight to the hospital. Reflecting back, my dentist must have known what it was.
Leroy Duffus
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 dayto-day basis.
I am a positive person by nature. I am now being treated at a top Sarcoma Specialist Centre. For the first time since my diagnosis, this was where I felt like I was finally being treated Since then the sarcoma returned in like a person. My consultant sat me my sacrum (base of the spine). Surgery down and explained everything, isn’t advised because of where the so I knew exactly what my options tumour is, so instead I underwent were. He answered all my questions radiotherapy treatment. Currently and reassured me about what they the sarcoma is in my lungs and now I were going to do. As my tumour am having on-going chemotherapy was high grade, I needed “This whole treatment, the tumour is steady, chemotherapy, followed by issue has affected meaning it has stopped growing. surgery. All my family and friends rallied around me my family & friends. I do a lot of community work when I started treatment, So I now speak in youth clubs and schools taking it in turns to come mainly with young people, and sit with me. to others, help out from around 14 to 19 years and give something old, who are not in education or During this process, I also employment and can’t seem to received excellent support back.” find their place in the system. I try from the clinical nurse specialist. to find something that will work for When the time came for my surgery sarcoma.org.uk
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. My diagnosis has been life-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’s Place...
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Fundraising
A BIG thank you to everyone Dressing as the Super Mario Brothers; swimming with sharks; shaving off your hair; and of course doing the Mobot – you have been a busy bunch this year. Here’s (just some of) your year in pictures…
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sarcoma.org.uk
Fundraising
View more at sarcoma.org.uk/fundraisers-gallery 020 7250 8271 sarcoma.org.uk
fundraising@sarcoma.org.uk Connect
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Fundraising
Carey smashes charity record! When Carey Lander, keyboard player and vocalist for Glasgow band Camera Obscura, launched her JustGiving 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.
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for John Peel, and also playing in the studio for Dermot O’Leary and Lauren Laverne. They toured extensively, 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.
arey Lander launched her record-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 Deschanel and Molly Ringwald; broadcasters Dermot O’Leary, Lauren Laverne and Geoff Lloyd; and writers Jon Ronson and Caitlin Moran.
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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. Connect
Carey grew up in Maidstone, 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 Carey was BBC Radio 1 at legendary DJ John Peel’s house. thrown in at the Carey Lander
deep end: her first gig was a session for BBC Radio 1 at legendary DJ John Peel’s house.
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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
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. Her close friend, the beauty columnist Sali Hughes, has described how 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 favourite word is ‘dinner-time’. Her quiet 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 sarcoma.org.uk
In theResearch hot seat
Meet Jeremy Whelan Professor Jeremy Whelan is a Consultant Medical Oncologist at UCLH, Chair of NHS England’s Sarcoma Clinical Reference 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? During the latter part of my medical training 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 at Middlesex Hospital where the 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. sarcoma.org.uk
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?
Jeremy Whelan
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.
would be better survival for patients with osteosarcoma and Ewing’s sarcoma achieved through less toxic treatment. Developing new drugs is 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 local service providers. My hope is that 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, Oncologists are on the because there are areas of excellence, front line of treating but they’re not consistent. We advanced disease. How have variation across the country challenging is it to deal and I’d like to see that variation with this and stay minimised and a much positive? “During my greater proportion of Most days I’m pretty pleased to medical training I was patients having access to excellence. be at work! I’ve struck by my experience always been The second thing I very grateful of young people would hope for is the to have the with cancer, and how greater application opportunity of precision medicine to work in this poorly their needs for the individual with field. We all were met.” sarcoma. That is already have frustrations coming to some extent; but we also have got clinical scientists and biologists things that we can turn to have made huge strides in unravelling as successes and which provide our the tangle of sarcoma, particularly motivation. of soft tissue, so we can discern one from another and understand more If you could bring about about why one is discernible from an improvement in one area of sarcoma care, what another and then understand what therapeutic implications that would it be? will have. The one improvement I’d like to see Connect
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Research
Research changes lives. Research We’re asking you to donate £10 a month to help researchers find the answers sooner.
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very day researchers across the UK are working tirelessly towards better treatments and, eventually, a cure for sarcoma. “Like most 15-year-olds, I thought that cancer was something that happened to older people,” says Pippa Hatch. “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 locate and remove. Luckily for me there 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. “Five years on since my diagnosis and another operation to remove the tumour, I have more welcome news this Christmas – I’ve just given birth to my first child, Oscar.
Oscar is welcomed into the world
“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.”
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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 Connect
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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.” sarcoma.org.uk
Research
h changed Pippa’s life The Hibberdine family
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.
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. sarcoma.org.uk
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.
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/Pippa
020 7250 8271 Connect
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Research
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. underlying cause of the pattern What’s your background? of cancers in the family through I work as a clinical geneticist as investigations and genetics testing. well as a researcher. I see families in clinic who have patterns of cancer I’m quite fortunate as my clinical that suggest a genetic susceptibility running through the family. We “We hope to work and my scientific work are quite closely related. My look back through the family identify new clinical work enables me to history to see if there is an test patients and families unusual number of people genetic changes for genes we know about; with cancer or an unusual which will tell us more my research work is around group of cancers in the looking for new genes and family. We work with these about why people genetic changes that increase families to understand the
develop sarcoma.”
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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? For many years I have been looking at genetic susceptibility to different
sarcoma.org.uk
Research
to bedside research technologies.
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.
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 Sarcoma is a cancer that clearly approval for the study. With ethical has strong genetic susceptibility. approval in place, we could then However there are some cases that move on to opening the study suggest unexplained susceptibility in NHS hospitals. This involves to sarcoma. As advances in genetic going through the Research & technologies develop, there are Development departments new opportunities to look and see of individual hospitals. “My clinical if we can find additional genes that We’ve now got a cause susceptibility to sarcoma and dozen hospitals work enables me to cause sarcoma to run in families. on board with test patients and families With multiple sub-types and poor more getting prognosis, I wanted to find out for genes we know about; my approval. more about the genetic causes. We’ve research work is around looking focused on working with What is your research for new genes and genetic collaborators project looking at? changes that increase from specialist We’re looking to recruit patients sarcoma who’ve had a sarcoma and an the risk of cancer centres and additional cancer and looking at the developing.” clinical genetics genetic mutations in these patients. departments because By studying patients who have had these are the clinical centres in another cancer as well as a sarcoma, which the patients we are looking to we’re aiming to identify genes which recruit might be seen. 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 sarcoma.org.uk
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 NHS setting. This project is a fantastic opportunity 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
New RAC Members Sarcoma UK are delighted to welcome Professor Ted Hupp and Mr Anant Desai to our Research Advisory Committee.
Professor Ted Hupp
Mr Anant Desai
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Research
2015 Grants awarded Professor Donald Salter, University of Edinburgh. Development of magnetic nanoparticle bearing mesenchymal stem cells for magnetic hyperthermia treatment of sarcomas. 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.
Prof Adrienne Flanagan, UCL. To investigate the utility of PRC2 complex mutations as biomarkers for malignant peripheral nerve sheath tumours. This project has two aims; the first is to look if a newly discovered set of mutations are found in a bio-banked set of malignant peripheral nerve sheath tumours (MPNST) sarcomas which originate from peripheral nerves - and see if the mutations are specific to MPNST. This could help with diagnosing MPNST, which is often mistaken for other tumours. The second aim is to look at a blood test for genetic mutations found in MPNST. This will see if there is any correlation between results and patients with tumour recurrence. This could lead to a blood test for early detection of a MPNST recurrence.
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.
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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. Connect
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Dr Richard Martin, Aston University. Developing and characterising novel bioactive materials to selectively induce osteosarcoma cell death and simultaneously enhance bone regeneration. 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.
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. 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 collected from patients on the GeDDiS trial. This may help determine 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.
Dr Henning Wackerhage, University of Aberdeen. Causes and therapeutic implications of YAP activity in embryonal rhabdomyosarcoma. This project examines the role of YAP (a protein) in rhabdomyosarcoma, looking at whether changes in DNA sequence 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 sarcoma.org.uk
Support & information
Living well with sarcoma ability to work and understand what adjustments you might need.
Hindquarter amputee Janine Jackson on jet-setting around the world and how to make returning to work a positive experience.
Reasonable adjustments
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anine was diagnosed with pleomorphic sarcoma of the pelvis in December 2004. She had four 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 come out of special measures. My head teacher refused my resignation. She was very supportive and said she would aid my return to work as and when that happened.
If 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.
• • Janine completes 750m Open Water swim at Dorney Lake
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
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 sarcoma.org.uk
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’.
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, Singapore and Los Angeles - and I enjoy 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.
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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 work Returning 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 Connect
Further information England, Scotland and Wales • Access to Work gov.uk/access-to-work • Fit For Work fitforwork.org 0800 032 6235 Scotland • fitforworkscotland.scot 0800 019 2211 Northern Ireland • Equality Commission for NI equalityni.org 028 90 500 600 • Labour Relations Agency (LRA) NI www.nidirect.gov.uk/labourrelations-agency 028 90 321 442 Or contact us 020 7250 8271 info@sarcoma.org.uk sarcoma.org.uk/rehabilitation
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GP education
We’ve been talking to GPs Sarcoma 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.
W
orking in partnership with BMJ Learning, who provide education 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 London to Glasgow via Birmingham and Manchester, to meet GPs face to face and talk to them about sarcoma, at a series of BMJ GP Masterclasses. During this time, we spoke to around 300 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, over a half of those we 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. Most were unsure of 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.
14
The module was written by orthopaedic surgeon, Mr Chandrasekar from from Liverpool Sarcoma Service/ Royal Liverpool & Broadgreen University Hospitals Trust.
• 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
Diagnostic Tool – is it soft tissue sarcoma? All patients with suspected/diagnosed soft tissue refer to a Sarcoma Specialist Centre.
sarcoma
Clinical presentations
Lump bigger than a golf ball (>4cm) Lump increasing in size Deep to the fascia
Investigations Children
Adults
• Refer for very urgent ultrasound (performed
• Refer for urgent ultrasound (performed within
within 48 hours)
2 weeks) 2 weeks) • Refer for urgent appointment (withinsuggests to a sarcoma specialist centre if scan soft tissue sarcoma or if findings are uncertain and clinical concern remains
for very urgent appointment (within Diagn ostic• Refer if scan hours) to–sarcoma Tool 48 is itspecialist bonecentre are ma? sarco suggests soft tissue sarcoma or if findings remains
uncertain and clinical concern All patients with suspected/diagno sed refer to a Sarcoma Specialis bone sarcoma deep lumps. t Centre. Note: MRI is more effective for investigating large the direction of a sarcoma specialist centre. MRI & biopsy (fine needle) should only be performed
under
Sarcoma Specialist Centres: Soft Tissue
Clinical presentations
Bone pain, particular
10. Bristol Sarcoma Servicely at night Mass/swe NHS Trust North Bristol lling Exeter Sarcoma Service 11. Restricted movement in Foundation a joint Trust Royal Devon & Exeter NHS 12. Plymouth Hospitals NHS Trust 13. The London Sarcoma Service Trust Manchester University College London Hospitals NHS 3. Liverpool Sarcoma Service Royal National Orthopaedic Trust, Trust Foundation Royal Liverpool & Broadgreen University Hospitals Hospital NHS Trust Investig 4. Leeds Regional Sarcoma Service ations Hospital 14. The Royal Marsden AdultsTrust Leeds Teaching Hospitals NHS Foundation London Children 5. Sheffield Sarcoma Unit • Refer for urgent x-ray (performe15. South West Wales Sarcoma Trust d within Sheffield Teaching Hospitals NHS Foundation 2 weeks) Trust • Refer for very urgent x-ray (performe Multi-Disciplinary Team 6. Royal Orthopaedic Hospital NHS Foundation d within hours) • Refer for urgent appointment (withinSouth West Wales Cancer48Network Birmingham Wales 2 weeks) 16. North to a boneSarcoma • Refer for very urgent appointme sarcomaUnit specialist centre ifrefer 7. The Midlands Abdominal & Retroperitoneal to Greater Manchester & Oswestry nt (within x-ray NHS suggests 48 hours) for specialist assessmen bone sarcoma or if findings Sarcoma Service University Hospitals Birmingham are t at a bone uncertain and clinical concern Foundation Trust sarcoma Cancer Sarcoma specialist Local Ireland centre if an x-ray suggests Northern 17. remains bone sarcoma or if findings 8. East Midlands Sarcoma Service Committee are uncertain and Hospital, City Nottingham University Hospital NHS Trust, Leicester Belfast Hospital, clinical Park Musgrave concern remains Note: Radiographs may Royal Infirmary Hospital, Mater Hospital Belfast, be normal in patientsRoyal withVictoria early bone sarcoma. Dundonald Ulster Hospital, 9. The Oxford Sarcoma Service (OXSARC) Nuffield Orthopaedic Centre
Service 1. North of England Bone & Soft Tissue Tumour Trust Newcastle Teaching Hospitals NHS Foundation Service (GMOSS) 2. Greater Manchester & Oswestry Sarcoma Oswestry, Robert Jones & Agnes Hunt Orthopaedic Hospital Manchester Royal Infirmary, The Christie NHS Foundation
Further information Sarcoma Specialist
guidelines Sarcoma Group Centres : Bone • British Guidelines for Suspected Cancer (2015) • NICE 1. North of England Bone sarcoma.org.uk/health-professionals/sarcoma-specialist-centres (2006) •& Soft Tissue Tumour Service • NICE Guidelines for SarcomaNewcastle Teaching Hospitals NHS Foundation Trust 2. Greater Manchester &
Oswestry
info@sarcoma.org.uk
Sarcoma Service (GMOSS) Manchester & Royalresources We provide Infirmary, The Sarcoma UK is the Christie NHS Foundation Trust,Robert Jones &sarcoma.org.uk help GPs programmes Agnes Hunt Orthopaedic Orthopaedito only cancer charity 3. Royal c Hospital Hospital Oswestry 020 7250 8271 Birmingham and health professionalsNHS Foundation Trust in the UK focusing more about 49-51 East Road, on all types of 4. Theunderstand Oxford Sarcoma Service London N1 6AH The bone & soft tissue cancer charity (OXSARC) sarcoma. Nuffield sarcoma Orthopaedic Centre, Oxford 5. The London Sarcoma Service Royal National Orthopaedic Hospital NHS Trust, University
6. North Wales
College London Hospitals
A company limited by guarantee in England and Wales and Wales (1139869) and in Scotland (SC044260). in England refer to Greater Registered as a charity Manchester
(7487432)
NHS Foundation Trust
& Oswestry Sarcoma Service 7. Northern Ireland Local Sarcoma Cancer Committee Musgrave Park Hospital, Belfast
Further information
• NICE Guidelines for Suspected Cancer • NICE Guidelines for Sarcoma (2006) (2015) Sarcoma UK is the only cancer charity in the UK focusing on all types of sarcoma
Registered as a charity in
• British Sarcoma Group guidelines • sarcoma.org.uk/health-professionals/sarcoma-specialist-centres
We provide resources & programmes to help GPs and health professionals understand more about sarcoma.
England and Wales (1139869)
info@sarcoma.org.uk sarcoma.org.uk 020 7250 8271 The bone & soft tissue
and in Scotland (SC044260).
cancer charity
A company limited by guarantee
49-51 East Road, London N1 6AH
in England and Wales (7487432)
early diagnosis of sarcoma matters. He told GPs that most sarcomas are diagnosed 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!
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. Connect
• Sarcoma UK • Winter 20 15/20 16
sarcoma.org.uk
News
News round-up The Boom Foundation raise £57,000 in one night!
Sarcoma UK Support Line
460 people attended the Boom Gala Ball 2015, at the Titanic Belfast.
In February 2016 we are excited to launch the Sarcoma UK Support Line.
Boom was set up in memory of Philip Wilson, by a committee, and his fiancé, Leona. All money raised by Boom is split between practical help and vital research. Fifty per cent 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. Vicki Smith, our Director of Fundraising said: “We are so grateful to work in partnership with Leona and 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.”
Many patients and families tell 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. Boom founder Leona attempts the Charleston with her brother
To date, Boom have raised £75,000 for Sarcoma UK – making a huge impact on everyone affected by sarcoma.
Our support line is confidential. It is run by our Specialist Sarcoma Nurse and our Head of Information and Support. 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.
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. info@sarcoma.org.uk sarcoma.org.uk/ support-information
sarcoma.org.uk 020 7250 8271 info@sarcoma.org.uk @Sarcoma_UK uk.sarcoma 49-51 East Road, London N1 6AH Registered as a charity in England and Wales (1139869) and in Scotland (SC044260). A company limited by guarantee in England and Wales (7487432)
Board of Trustees Dr Jane Barrett Karen Delin Prof Rob Grimer Leigh Hibberdine Ian Hughes Sharon Reid Helen Stradling Dave Thompson Dr Jeff White Sam Whittam Glyn Wilmshurst
Editorial and production team Editorial: Vicki Smith, Glyn Wilmshurst and Alice Snape Design and layout: INQ Design Ltd 020 7737 5775
Founder Roger Wilson CBE
Disclaimer: Please note that personal views and opinions expressed are not necessarily endorsed by Sarcoma UK. The material in this publication is provided for personal, non-commercial, educational and informational purposes only and does not constitute a recommendation or endorsement with respect to any company, medical professional or product. Sarcoma UK makes no representations and specifically disclaims all warranties, expressed, implied or statutory, regarding the accuracy, timeliness, completeness, merchantability or fitness for any particular purpose of any material contained in this or attached document/s. The information contained in Connect is not intended to replace advice or medical care from your doctor. No part of this publication may be reproduced in any way without prior permission from Sarcoma UK.
Patron Richard Whitehead MBE
sarcoma.org.uk
Connect
Medical/Scientific Advisor Prof Ian Judson
• Sarcoma UK • Winter 20 15/20 16
15
Donate! sarcoma.org.uk/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?
Or make a donation By Text: Text SAUK00 £10 to 70070 Minimum donations £1 and maximum donation is £10. Gift Aid can also be added. By cheque: Make payable to Sarcoma UK and post to Sarcoma UK, 49-51 East Road, London, N1 6AH By Bank: Lloyds TSB Account name: Sarcoma UK Sort Code: 30-97-62 Account No: 02884274 Reference: Your name
sarcoma.org.uk/donate Return the form below Thank you!
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.
Form A
To the Manager:
Please make a first payment of £
Address:
on
and thereafter a similar payment *monthly/quarterly/annually Postcode
Account name:
*please delete as appropriate
until *further notice /the following date
Sort code:
Payee: Sarcoma UK Sort code: 40-52-40 Account no: 00019763 Bank: CAF Bank Ltd Branch: 25 Kings Hill Avenue, West Malling, Kent ME19 4JQ
Account no:
Signed
Name:
Form B
I wish to set up a regular Standing Order in favour of Sarcoma UK.
Bank name
Home address:
Title
First name
Surname
Date
I have set up a regular donation to Sarcoma UK by Standing Order of £
per *month/quarter/year
*please delete as appropriate
Telephone:
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.
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