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ConnectLatest news - research - support - campaigning - how to get involved with Sarcoma UK Winter 2019

sarcoma.org.ukuk.sarcoma@Sarcoma_UK@Sarcoma_UK

The power of RNA sequencing to beat rare cancersP8

A model inspirationA young woman blazing a trail after a sarcoma diagnosis P11

Sarcoma in the spotlight at No.10The launch of a groundbreaking research programmeP3

Focus on research in Liverpool

01Connect Sarcoma UK Winter 2019

The last few months have been incredibly busy with a packed programme of events and new initiatives as well as a growing team and a new look brand helping us stand out.

We were delighted to officially launch our genomics research programme at a reception in the No.10 Downing Street garden this summer. The event was a real milestone for supporters and scientists alike, and we have already been capitalising on the strong interest on the evening to help us transform the landscape for sarcoma patients through dedicated research and, ultimately, targeted treatments. We will keep you updated on these exciting developments.

Also in July, Sarcoma Awareness Week was the focus of a variety of activities. The Big Picnic enthused many of you to get creative throughout the month while raising funds and awareness. I really enjoyed hearing all about your fun-packed feasts and, even better, joining in more than one of my own!

Our Policy and Public Affairs activity has stepped up a gear as we bring MPs and policymakers up to speed with the current sarcoma landscape, and advocate for better care, treatment options and funding. You can read more about this work on page 13.

The money you have tirelessly raised means we can fund more ground breaking research, enabling projects like one led by Professor Mandy Peffers at the University of Liverpool to happen (page nine). If you’d like to finish the year with some festive good cheer, we’re delighted to announce the very first Sarcoma UK Christmas Carol Concert on December 11. Tickets are proving very popular – get yours at sarcoma.org.uk/events/2019/12/christmas-carol-concert

Whether you’ve baked, biked, cheered or campaigned, we simply couldn’t do this without your support. Thank you so much for everything you do for us and enjoy the rest of 2019.

Richard Davidson Chief Executive

Welcome to the autumn issue of Connect


Facts & Figures About Sarcoma

About Sarcoma UKSarcoma UK is a national charity that funds vital research, offers support for anyone affected by sarcoma cancer and campaigns for better treatments. It is the only UK charity focusing on all types of sarcoma.

Sarcoma UK has helped more than 1,560 individuals who used our support services an average of three times since we launched in February 2016.The charity is now one of the biggest funders of sarcoma research in the UK, having invested £2.6 million to date (as of July 2019).

Our vision Where everyone affected by sarcoma cancer has the treatment, care and support they need.

Our missionTo ensure everyone affected by sarcoma receives the best treatment, care, information and support available and to create the treatments of the future.

What we do• Drive awareness of sarcoma cancer• Find answers through funding

sarcoma research• Provide information and support to

anyone affected by sarcoma cancer• Campaign for better treatments and

to improve standards of care.

Our goals• More people will survive sarcoma• More will be known about the causes

of sarcoma• Everyone affected by sarcoma will

have access to the best treatment and care.

• Sarcoma is more common than previously thought. In 2015 there were 5,345 people diagnosed with sarcoma cancer in the UK.

• There are three main types of sarcoma: soft tissue sarcoma, bone sarcoma and gastrointestinal stromal tumours (GIST).

• Sarcoma diagnoses now make up about 1.3% of all cancer diagnoses in the UK.

• About 670 cases of bone sarcoma are diagnosed every year in the UK.

• Seven in ten (71%) sarcomas diagnosed in the UK are soft tissue sarcomas.

• The majority of people are diagnosed when their sarcoma is about the size of a large tin of baked beans (10cm).

Survival Rates• Sarcoma survival rates have been very gradually

increasing over the last two decades in the UK.

• Almost eight in 10 people (78%) diagnosed with sarcoma in the UK will live up to a year.

• The average percentage of people living three years after being diagnosed with sarcoma in the UK is 64.5%.

• The five-year survival rate for sarcoma is 55%.


Heath and Social Care Secretary Matt Hancock hosted a reception in the No.10 Downing Street garden in our honour to officially launch a potentially game-changing major new research programme.

Patients, carers, researchers, Sarcoma UK supporters and health professionals came together in Downing Street to hear all about our exciting plans to transform the sarcoma landscape through research.

The Sarcoma UK Genomic Research Programme aims to bring together the top minds in cancer research to find answers to the most fundamental questions about sarcoma – about which relatively little is known.

The prestigious event on July 11 unveiled some of the plans and gave guests an opportunity to hear more from the experts involved in work which it is hoped will eventually lead to better and more targeted treatments for sarcoma.

Sarcoma UK has a strong connection with many at Downing St since David Cameron’s former principal private secretary, Chris Martin, passed away in November 2015 after a sarcoma diagnosis.

Matt Hancock, Secretary of State for Health and Social, Care and BBC journalist and broadcaster Zoe Conway, who was married to Chris Martin, were among the attendees. Zoe gave an impassioned account of the impact of her husband’s sarcoma on herself and her family. Guests

included athlete and Sarcoma UK Patron, Richard Whitehead MBE, and broadcaster and columnist Sali Hughes.

Several of the UK’s top sarcoma researchers were among those who heard Dr Nischalan Pillay speak passionately about the potential of genomic research. Dr Pillay was recently interviewed for Connect sarcoma.org.uk/connect-spring-2019

Former Prime Minister Theresa May has previously described the charity’s ‘profound connection’ with Downing Street and praised Sarcoma UK’s impact upon patients.

“I’m honoured to support their vital work to shine a light on this rare form of cancer and improve the treatment available – transforming the lives of thousands of sufferers and their families.”

The genomics programme has been gathering pace since the summer reception, with the establishment of a Genomics Development Board to help raise the £1 million to fund the work over the next three years. The Board first met in October and has now agreed a programme of activity.

Richard Davidson, Chief Executive of Sarcoma UK, says: “Guests at No. 10 were really engaged and energised by hearing about the scale of the challenge for sarcoma researchers and the promise of genomics research. Since July, we have built on their interest by talking to many people who are enthusiastic to help us support this work.

Sarcoma in the spotlight at No.10


“Sarcoma is a neglected cancer when it comes to research. There’s so much we don’t know about it, why it develops and how it spreads. It brings home why our relationship with No.10, which stemmed from Chris Martin’s untimely death, is so important.

“We would like to thank everyone involved at No.10 for their hard work, dedication and commitment in helping to put the spotlight on sarcoma. “

The same day saw the launch of NHS England’s sarcoma service specification – in short, guidelines to help improve the care of sarcoma patients in England. This is the first time that all sarcoma services will be commissioned to deliver the same level of care to patients across England. See page seven for more details.

At the start of 2019, Sarcoma UK invested a quarter of a million pounds in a piece of genomic research involving 35 scientific experts from across the UK who are investigating 1,000 genetic samples collected from the 100,000 Genomes Project. The Sarcoma Genomics England Clinical Interpretation Partnership (GeCIP) is investigating and cataloguing the breath of variations in genetic mutations in sarcoma for the very first time. It started on July 1, 2019 and was recently covered in Connect sarcoma.org.uk/GeCIP


Our inspirational fundraisers

Sun shines on Sarcoma UK runnersA super-sunny day around Newcastle helped our inspirational #Teamsarcoma tackle September’s Great North Run (GNR). The iconic half-marathon saw 16 runners wearing their new brand vests who have so far raised an amazing £5,249.39.

Among them were John Young, 74, and his wife Sue, 70, from Gilling West in North Yorkshire who have raised more than £900. John was diagnosed with liposarcoma in 2016 but following surgery and radiotherapy is now active and in remission. Incredibly, this was his 12th Great North Run at the age of 74 – a fantastic achievement for the pair who have 10 grandchildren under 16 between them. John did his first Great North Run in 2001 and his track record even includes running as part of his 70th birthday celebrations.

This year John proudly sported the words ‘Sarcoma UK’ on his compression stocking to really get the word out in a way he described as ‘a good use of advertising space!’

“There was the usual tremendous support from the crowd all the way,” says John. “We stopped briefly to chat to the Sarcoma cheering team and enjoyed the meet up at the finish and refreshments. Overall, it was a great sense of achievement and a marvellous occasion.”

London to Brighton conquered – on foot! In 2013, it was the lack of sarcoma awareness and funding that motivated Karen Delin to pick up her walking poles and walk 100 km from London to Brighton. As a member of the board of trustees, Karen knew first-hand the challenges facing the charity, especially in terms of funding. So, determined to do something to help, she walked non-stop for 31 and a half hours from capital to coast with her friend Ginny.

“It was the cause that kept me going in the middle of the night when I just wanted to give up. By the second hour of

walking, the big group of walkers had dispersed so it was just me and Ginny. It was really wonderful to have her support, and the support of the lovely volunteers at rest stops.”

Their amazing efforts raised £3,500 to help support everyone affected by sarcoma. It was also the perfect opportunity for Karen to put her new Nordic Walking hobby to the test.

“This challenge is perfect for anyone who wants to raise money, but like me isn’t a runner or cyclist. Completing this challenge was so inspiring and since finishing I’ve been walking in Madeira and Tuscany on holiday.”

After a great experience taking on this feat Karen and her family are looking further afield at challenges such as trekking the Great Wall of China. We wish them the very best of luck!

Tackling in memory of two youngstersThree Welsh rugby union favourites Colin Charvis, Tony Clement and Ian Gough were coaxed out of retirement to play in a very special fundraising match.

The charity game took part in Underhill Park in Mumbles in August to benefit Sarcoma UK and Swansea Mind.

The match was to honour the memory of two youngsters from the city who tragically passed away. Abigail Rockefeller had been diagnosed with a rare form of bone cancer, Ewing’s Sarcoma, at the age of 22. University student William Hughes, the best friend of Abigail’s brother Alex, was found dead in Corfu a year ago. Both families had been friends since their children started school together.

William’s father Stephen Hughes is the chairman of Swansea RFU and, with Alex, wanted to celebrate the memory of Abie and William through a fundraising event for the two charities

Clair Rockefeller, Abie’s mum, said: “Alex wanted to try and create some form of positive out of two terrible tragedies, by bringing people that knew and loved Abie and Will together, with an emphasis of fun and enjoying life but also raising awareness and funds in the process.”

The match has raised £3, 715 to date. Thank you to everyone who supported this initiative in so many ways.

These dedicated supporters have been tackling all sorts of personal challenges, from taking on half marathons to spinning their wheels between London and Brighton.


Your legacy helps our future Leaving Sarcoma UK a gift in your will is a promise to be a part of our future in a very thoughtful way. Your legacy gift will be used to help us support everyone affected by sarcoma. Any information you share with us will be kept confidential and handled with sensitivity.

Find out more about leaving a gift in your will by requesting one of our free Gift in Wills Guide at sarcoma.org.uk/get-involved/legacy

We know that thinking about your will can be daunting, but it’s one of the most important documents you will ever write. To help you take this step, we’ve partnered up with the National Free Wills Network, so you can have a simple will written or amended by a solicitor near you. There is no obligation to remember us in your will, but if you choose to do so, let us know so we can thank you properly.

We’re available any time to answer your questions or provide any information you may need. Email [email protected].

Get involved in 2020We’ve expanded our range of treks, walks, runs and obstacle races for 2020 that take place right across the UK. Like the sound of one or two? More at sarcoma.org.uk/raise-funds

A huge thank you to everyone who has supported Sarcoma UK by taking on a challenge. Your donations help us fund vital research and allow us to offer support to everyone affected by sarcoma.

Bath Half Marathon - 15 March 2020Manchester Marathon - 5 April 2020Kiltwalk Glasgow - 26 April 2020London to Brighton Walk - 23-24 May 2020Edinburgh Marathon - 24 May 2020Kiltwalk Aberdeen - 7 June 2020Kiltwalk Dundee - 16 August 2020Kiltwalk Edinburgh - 13 September 2020Great North Run (Newcastle) - 13 September 2020Royal Parks Half Marathon - 11 October 2020Three Peaks - dates throughout the yearSpartan - dates throughout the year, multiple locations


Proton beam therapy

NHS proton beam therapy centres offer ‘huge potential for patients’The first high energy NHS proton beam therapy (PBT) centre in the UK is now open and treating cancer patients, including those with sarcoma.

The Christie in Manchester opened its doors to patients in December 2018 after over two years of work by dedicated teams, from engineers to medics. It is set to be followed by a centre in University College Hospital, London in 2020.

This £250 million initiative represents an NHS milestone and a complex technical challenge in safely using beams which are up to two-thirds the speed of light.

PBT is a type of radiotherapy used to treat certain types of tumours, including some sarcomas. If treatment is before surgery, it aims to stop a tumour spreading or growing.

PBT uses high energy proton beams instead of x-ray radiation beams. They enter the body in a similar way but cut down on the amount of radiation reaching beyond a tumour. In short, harnessing particle accelerators and using them in a clinical environment

The Christie is one of Europe’s leading cancer centres, treating over 44,000 patients a year. Around 10 patients a day are currently undergoing PBT treatment there.

Once both UK centres are up and running, patients will continue to be sent abroad for treatment until both centres have fully developed their capacity of up to 750 patients a year.

Experts have cited that the main advantages of PBT are less long term side effects than radiotherapy for some kinds of sarcomas in certain types of the body. While it is a more

targeted use of radiotherapy, it doesn’t mean it will be more or less likely to improve chances of success, or of a cure.

Two main groups benefit from this treatment; children and young people, who in therapy can sometimes damage their developing organs and result in long term side effects to healthy tissue.

It can also be used for adults with sarcoma in parts of the body which are hard to treat – areas such as the spine, base of the skull, head and neck region, or pelvis.

There are side effects which depend largely on the part of the body being treated and the size of the tumour.

The information and support team at Sarcoma UK has produced a comprehensive factsheet to explain more about PBT, including who is eligible for treatment and why it may be beneficial.

Your medical team should discuss all your treatment options with you and explain why you are, or are not, being considered eligible for PBT.

Referral for PBT would be from a panel of specialist doctors via your own doctor, explains the factsheet. If you are eligible, you would be referred to the NHS centre at the Christie, or to an NHS commissioned centre in Germany, the USA or Switzerland.

Please speak to your doctor if you have any more questions about proton beam therapy. You can download the Sarcoma UK factsheet on PBT at sarcoma.org.uk/factsheet-proton-beam-therapy or hard copies can be ordered on 0207 250 8273.

There is also information on the NHS England website www.england.nhs.uk.

Image taken at the Christie NHS Foundation Trust


The power of RNA sequencing to beat rare cancers

A grant from Sarcoma UK to explore a sarcoma that unusually affects older people is helping to improving developments in treatments and diagnosis of the future.

A team at the University of Liverpool is halfway through its research programme which focuses on a better understanding of chondrosarcoma – a cancer of the cartilage. This rare type of sarcoma most commonly affects those over 40 and is found in areas such as the upper arms, thighs, pelvis, shoulder blades and ribs.

The work at the city’s Institute of Ageing and Chronic Disease is led by Professor Mandy Peffers, principal investigator, who has a background in a rather different area - as a vet. Her particular interest in horses, dogs and humans has previously been in the study of osteoarthritis – a disease of the joints. While this may sound quite a departure from chrondosarcoma, both are in fact age-related diseases.

The two-year study is undertaking the detailed sequencing of the molecular mechanisms in the thighbone and knee that lead to chrondrosarcoma. These are known as ‘small non-coding RNAs’ and are potentially useful for targeting treatments and as biomarkers.

Small RNA sequencing represents a non-hypothesis driven approach to a cancer which, although rare, is the most common primary bone cancer in older adults, and the second most common after osteosarcoma. It has been shown that this sarcoma is resistant to treatment by chemotherapy and radiotherapy.

In the latest stage of the project, the team has compared the results of normal and chondrosarcoma genes.

“We have adopted a very systemic approach and been very open-minded as to what we might have found,” says Mandy. “Sarcoma is a new area for us, and as we get more results, we get more excited. “

Unusually, the idea for the study in 2017 originated from co-investigator and PhD student Panos Balaskas who became interested in sarcoma from looking at microRNAs in osteoarthritis for his main PHD work. This is funded by the Medical Research Council Doctoral Training Studentship who invest in the next generation of scientists.

“Most sarcomas affect younger people, but this type of sarcoma affects mainly those over 40,” explains Panos.

He believes that this project is particularly worthwhile as not many people are pursuing this area of sarcoma research. Often there are good ideas, but not necessarily the funding to carry out the experiments.

A relatively small number of initial samples of the thigh bone and knee, working closely with the Royal National Orthopaedic Hospital in Stanmore, will hopefully be validated by more samples in the coming months.

This painstaking work differentiating the normal samples to the chrondrosarcoma tumours is so far on track, partly due to the wealth of sequencing experience in the team.

In this final year, they are now keen to build on the sequencing results and discover more about why they have these results. Ultimately this will lead to better treatments and a more informed diagnosis of this common sarcoma as well as being potentially relevant for other more common cancers.

“Because this is a new area for us compared to osteoarthritis, we haven’t had any bias, for instance towards a favourite gene. Ultimately, we’d like to identify a couple of genes so we can take forward the ‘use of’ biomarkers,” says Mandy Peffers.

“The really big advantage about working with global systems is that you can unearth a lot of information at the same time from the dataset, and it’s good practice to give access to others so they can glean even more.”

“With big sequencing studies, it comes down to the cost. You start with a relatively small number of samples, and then validate with a larger number. If the research is good, then sharing the data will mean others can benefit and there are further opportunities for research in this field.

“We are very grateful for Sarcoma UK to have given us a grant and to have been open-minded about our lack of cancer experience.”

Long-term the Liverpool team hope to see the results published and future research build on its findings, potentially allowing more effective biomarkers to be discovered and so better treatments for patients.


When you’re affected by sarcoma, festive times of the year like Christmas can be bittersweet. For James and his wife Sarah, their first Christmas after diagnosis was their first as a married couple. Sarah was diagnosed in the summer and began receiving treatment in central London at University College London Hospitals (UCLH). Travelling into London regularly through the autumn meant that they first experienced the twinkly Christmas lights early on.

Together, they decided that juggling treatment cycles with their traditional celebrations wasn’t something they wanted to do, especially with Sarah due to be at a low point in her chemotherapy over Christmas. Choosing instead to celebrate early, they booked a ‘Film and Fizz’ night at the restaurant where they were engaged, exactly two years after that special night.

James said: “We really tried to embrace Christmas, despite everything else that was going on. We wanted to spend the day together, but we didn’t want Sarah to feel any pressure.

“Christmas day itself was actually lovely, and we had a fairly relaxed day; a stark contrast to what had become a normal and intense routine of rushing to hospital appointments. Having spent so much time away from home we really valued having time in a place where we could really relax.

“It sounds clichéd, but everything that we had faced since August showed us how important friends and family were to Sarah, and equally how important she was to them.

“My advice to anyone facing their first Christmas since diagnosis would be do what feels right for you, and most importantly, enjoy spending time together, even if you feel selfish in doing so.”

Despite the clinical team’s best efforts to get everyone home for the Big Day, it’s often those with sarcoma that spend Christmas on the ward. On the UCLH children’s cancer ward, Christmas is no less magical for being spent in hospital, for staff, patients and families alike.

Abu Sidhanee, Children’s Physiotherapist and Charlotte Betteridge, Children’s Occupational Therapist, dedicate

this time of year to helping their patients and their families make happy memories, despite them going through what is probably the hardest time in their lives.

From tinsel and trees to mince pie tea parties, the team even use their free time to pull out all the stops to make sure everyone feels special at Christmas.

Abu, the first to put on the Christmas CD every year, encourages his team to get involved and enjoy the festive season. “Even though I don’t celebrate the religious part of Christmas it’s still my favourite time of year. Everyone on the ward has a reason to be happy and has something to look forward to.”

Abu has worked on the ward for 11 years at UCLH, including many Christmas days. Despite the reality of working with sarcoma, it’s a time he holds close to his heart.

“It’s a privilege to work on a children’s ward at Christmas. The experience sits with you and I can remember every single Christmas I’ve worked. It makes you appreciate your own family time and helps you keep things in perspective.

“Being on the ward though, that’s like being part of one big family. We speak to families about their specific traditions and try to include them in our celebrations.

For Charlotte, experiencing the Christmas season on the ward has made her appreciate the hectic family schedule she has around the festive season. Not one to miss out on the Christmas Day fun, she spent last Christmas Eve making stockings for each child staying on the ward on Christmas Day so they could be placed on the children’s beds in the night by the nurses.

“Sparkly moments are the ones everyone has to cling onto. Christmas – there’s just something about it. It gives you that boost and emotional high that you need in the New Year when everything can start to feel real again.

“The most amazing thing is the generosity which comes to the ward. No matter what your situation is, everyone comes together to make Christmas a magical time.”

The C Word

Welcoming Christmas fanfare from the Reading Spring Gardens Brass Band

Hosted by Canon Roger Royle

Wednesday 11th December 2019 at 7pm (doors open 6:30pm)

Celebrity Guests include: Richard Arnold, Robert Powell, Linda Robson, Sandra Dickinson, Mark Osmond, The choir, The Rose Singers, Soprano Sally Harrison, Baritone Mark Llewelyn-Evans, Clarinettist David Wong and American soul singer Madeline Bell

The Actor’s Church, St Paul’s Church Bedford Street, Covent Garden, London WC2E 9ED

To book tickets: www.actorschurch.org/whats-on

Tickets £20

All funds raised will go to support the work of Sarcoma UK

AN EVENING OF CHRISTMAS CAROLS, READINGS AND SOLO PERFORMANCES

IN AID OF SARCOMA UK


The past year has given us much to be proud of. Here’s just a few of the achievements highlighted in our second Impact Report which shows where your money went and our ambitions for the future. Thanks to you, we are making a difference.

• We invested £655,663 in sarcoma research in 2018 – 19, including our biggest ever grant to a single research project (£250,000).

• Our total income in the year was £1,863,535, thanks to 606 fundraisers.

• A total of 38 sarcoma researchers and experts started working collaboratively on the sarcoma genomics GeCIP research project.

• We supported 525 individuals through the Support Line an average of three times – an increase of 15 per cent from 455 people.

• We saw 500 responses to NHS England’s consultation

around the revised Sarcoma Service specification – an astounding five times the norm.

• Sarcoma Awareness Week 2018 was our biggest ever, with more than 850,000 people reached through social media and 35 pieces of national and broadcast media coverage.

• Nine in 10 users of the Support Line told us the service had helped them in some way.

• We distributed 6,059 patient guides to hospitals, sarcoma service centres and clinics throughout the UK.

• More than 92% of visitors to our Clinical Trials hub, launched in March 2018, who responded to a poll said their questions about clinical trials had been answered.

• One in four people in the UK correctly knew what sarcoma is, according to a YouGov poll – more than we thought.

For more details about our work, you can read the full Impact Report at sarcoma.org.uk/impact

“I appreciate all that you do, the information you have and provide. It’s invaluable to those who are patients, family or professionals.” Cindy-Anne Munro, supporter of Sarcoma UK

Our impact 2018 - 19

£655,663 Invested in research

£1,863,535 Total income

525 Supported through the

Support Line

£


Your voices helped shape NHS care guidelines Major NHS changes likely to lead to better outcomes for people living with sarcoma are now a reality thanks to the input of many of our supporters

The launch of the NHS England sarcoma service specification in July 2019 means that it is the first time that all sarcoma services will be commissioned to deliver the same level of care to patients across England.

This follows an overwhelming response from people contributing to the approval of the service specification, estimated to be around five times the typical response level, according to NHS England.

“As a charity, it was important for Sarcoma UK to be able to contribute to the approval of the specification. After actively promoting this to supporters, it became abundantly clear that respondents understood why this issue was so important to engage with alongside a clear desire to be part of that process to affect positive change,” explains Sarah McDonald, Sarcoma UK’s Director of Research and Policy.

“It demonstrates the benefit of involving patient organisations in both the development and engagement around such consultations. It also sends a strong message around collaboration with supporters to ensure their voice counts and makes a tangible difference.

“Sarcoma is a complex disease, with a low level of awareness. We know that survival rates increase when patients are treated in a sarcoma specialist centre (one of 16 UK wide) under the care of a dedicated multi-disciplinary team.

“Having the right specialists who know how to treat and manage these cancers in these hubs of expertise leads to better outcomes for sarcoma patients.

“We’re hopeful that these revisions add further clarity and emphasis about why these centres are so important when it comes to offering the best possible care.

“This advance may not have happened without your support and we are very grateful for all your responses. “

Over the last two years NHS England has invested £200 million to find ways to diagnose cancer earlier and improve care for those living with cancer.

See more at www.england.nhs.uk/blog/why-your-voice-counts-in-the-fight-against-cancer

Sarcoma News


A young woman who had a leg amputated after a rare cancer diagnosis is now blazing a trail as a fashion model – the last career she ever expected to follow.

Bernadette Hagans, 23, was diagnosed with synovial sarcoma in August 2018, a year after experiencing pain in her right leg. She thought that it was muscle pain which would go away on its own and was possibly due to her move to a top floor apartment.

“I had thought that I just wasn’t used to stairs, but then I was waking up in the night with the pain. It felt like my leg was going to snap,” said Bernadette.

Despite repeated trips to the doctors, Bernadette had been told that it was probably nothing.

“They just didn’t have the answers. I kept going back, and even when asking about other things, I would mention it. They were making me feel that I was wasting their time.“

Six months later, she was sent for ultrasound and then

straight to a different hospital to see a specialist for an MRI scan. Even then, it took weeks to get her results and undergo a biopsy after a tumour was identified.

Bernadette had been attending appointments alone during her breaks from her job at a bookmakers. It was only when she needed her parents to collect her from the hospital that she let them know what had been going on.

“I had to tell them as I needed them to collect me and my car from the hospital as the pain was so bad, I couldn’t drive,” she recalled.“When I told them, they freaked out and then were incredulous when I asked them to take me back to work.”

Weeks later, Bernadette was again alone when doctors told her she had a rare and aggressive sarcoma. They explained that an amputation was the next and only real course of action as the tumour was tangled up with her nerves and blood vessels. But her positive reaction to the news only served to surprise the medical team.

Bernadette Hagans: a model inspiration


“I was still smiling and they were confused. I knew straight away what it was but I didn’t cry – I was messing about, making jokes.

“My reaction was that I had a chance of life – other people don’t always have that chance. I didn’t see the point of being sad.

“The nurse thought I didn’t understand and wanted to ring my parents for me, but I said I wanted to do it myself. I drove down by the water, near the Titanic, where I recorded a video talking about my symptoms and urging anyone who had them to get checked out.

“I didn’t want to tell my parents on the phone so I went round to see them. Mum was asking what it meant and then got very angry about it, while my dad was in denial. Then when I told them about the amputation, they just couldn’t believe it.”

Bernadette was also concerned about telling her four brothers.

“I told my older brother and wanted him to tell the others so they could talk about it themselves. We didn’t tell my younger brother as we didn’t want to scare him – we only told him when I was going into hospital.

Following months of test, Bernadette’s surgery went ahead on the day before Halloween.

“In that time, I’d made myself a bucket list with all the things that I wanted to do that I thought I might not be able to do again, such as running and ice-skating.

“Even after surgery, I was straight back to making jokes. I’d bet that I would be out of hospital within a week of surgery, and I left on my seventh day. “

In January, after weighing up all the pros and cons of chemotherapy which she decided against, Bernadette focused on learning to walk again with a prosthetic leg.

“I absolutely loved it – I felt so tall, just like a giant , even though I am tiny at 5 ft 3 inches. “

Despite all the advice that this would take a while, Bernadette had no problems at all walking again.

“Straightaway I was fine – in fact I was helping other people to walk as I walked myself in just 10 days.

“The doctors even said to other people there, ‘don’t compare yourself to Bernadette, she’s not normal!’”

Her modelling opportunities followed a chance comment on an Instagram post by specialist model agency Zebedee Management who work with diverse models.

While the agency were keen to see her, Bernadette agreed – once she had learnt how to walk again.

Things moved quickly after a trip to London for a casting day and a photoshoot for her portfolio. Very soon, she was doing her first shoot for Primark.

Surprisingly, modelling is something that Bernadette had never even considered before her diagnosis.

“I was really shy, and didn’t think I could do it. But then I thought what if other kids who think they can’t do this, see me and think they can?

“I love it all. I’ve completely changed and am way more confident than before.”

Since then, Bernadette has combined modelling, media work and working with charities. In September, she held a formal event for the Boom Foundation, CLIC Sargent and Target Ovarian Cancer and is passionate about raising awareness of cancer.

She is also working with Junk Kouture, a fashion competition with student designers creating striking couture from recycled materials.

And the future? “This time last year, I’d never have expected to be doing all this. I’m absolutely keeping my eyes and mind open; if something comes along that I want to do, then I’ll just do it.”

Her advice to anyone else who is facing similar circumstances as hers is very simple.

“Try to keep things in perspective. Not every cancer story is a sad story. Stay strong, and try not to get down – try to keep a strong mind set. “

Her friends and family are really happy for her, and now work hard to keep up with her.

“I’ve been so lucky. Your life isn’t really over with a disability – there’s so much that you can do. “


Policy and public affairs updateScotland considering regular use of STS drug tradbectedinTrabectedin, a type of chemotherapy which has been available in England for over a decade, is being considered for routine use in Scotland. This means all Scottish patients would have access to it without doctors needing to apply for special funding. Bradley Price, Policy and Public Affairs Manager, was part of the patient expert panel representing sarcoma patients in the Scottish Medicine Consortium’s appraisal of trabectedin in October.

Trabectedin is a chemotherapy drug which is used to treat soft tissue sarcoma. It’s usually given after previous treatment hasn’t been effective or if patients are unable to have the standard first line treatment drug, doxorubicin.

We want to make sure that there is equality in the treatment options available in the UK. Being part of this appraisal process means that we’re one step closer to helping more patients in Scotland have access to a range of treatment options. We hope to hear by the end of the year whether trabectedin will become available routinely.

Bradley has also led Sarcoma UK in responding to two Government consultations. One was from the Cross Party Group on Cancer about our priorities for cancer care in Scotland, and one from the Scottish government on the current system used to decide what medication Scottish patients can access.

Sarcoma UK is committed to helping people with sarcoma access the most effective treatments for their cancer. Whether that treatment is radiotherapy, chemotherapy, surgery, or support, we want to make sure that everyone has access to evidence-based therapies, no matter where they live in the UK.

New drug gains European approval We’re delighted to announce that in September the drug larotrectinib was the first of its kind to be approved for use in Europe. This means it’s one step closer to being available to patients in the UK.

Larotrectinib is a new type of ‘tumour-agnostic’ drug that targets tumours based on their genetic makeup. Earlier this year, the NHS described this class of drugs as ‘revolutionary’ and said that preparations were already underway to ensure patients had access to them when ready.

Sarcomas can occur anywhere in the body, often in hard to access areas meaning that surgery is not always an option. Traditional radio and chemotherapies can also have lasting negative side effects for patients and it can be difficult to watch loved ones go through aggressive treatments.

This drug works by targeting the specific NTKR genetic abnormality in tumours. Rather than treating the tumour based on its site in the body, it targets any tumour with this mutation meaning it can be used to treat more than one tumour at once.

During a clinical trial at The Royal Marsden, larotrectinib was used to treat fibrosarcoma, sarcoma of the connective tissue, in two-year-old Charlotte Stevenson. Charlotte was diagnosed at 14 weeks old and was recruited onto the trial after a year of traditional treatment at her local hospital in Belfast. So far she is doing well and the drug has made a huge impact on her cancer and her quality of life.

Sarcoma UK is hopeful that this marks the start of more drugs of this type being available in the near future.

Richard Davidson, Chief Executive of Sarcoma UK says: “For cancers like sarcoma where the number of drugs and treatment options are limited, it’s hugely encouraging to see this development with larotrectinib one step closer to being available to patients in the UK.

“It highlights the importance of clinical trials and the need to continue to develop new drugs. With currently only just over half of sarcoma patients surviving more than five years, this effective new treatment is welcome, especially if it is kinder to patients. We’re hopeful this option will be rolled out in the very near future.”

If you have any questions about what larotrectinib could mean for you, or about sarcoma, contact our Support Line on 0808 801 0401 or email [email protected]

Sarah McDonald, Director of Research and Policy says: ‘Taking policy and campaigning work up another level is so important to drive change that will benefit people affected by sarcoma, and is equally as important as the research we fund.’


What’s data got to do with it?

Surprisingly, lots.In a world that seems to be increasingly driven by numbers, data and GDPR, it can often feel like Big Brother is watching. These days, there are statistics, percentages, polls and questionnaires everywhere you look, not to mention data collected through social media and the internet.

Having recently seen how some companies have been using and passing on our data for targeted advertising, many people are now aware of how powerful their digital footprint can be – and rightly so.

Sarcoma UK, like the majority of other charities and organisations, collects data and recently we’ve been as keen as anyone about asking our supporters for information. In fact, in one of our most recent polls we asked you what your preferences were for this very magazine.

As Sarcoma UK grows as a charity we have more time and capacity to examine the data we collect and learn from it. We use these data to inform decisions, discover what we might be missing, and decide how to focus our time and energy most effectively. Data isn’t just about numbers, it’s the tool we use to get our message out there in the best way possible.

One of our most important messages is ‘sarcoma is cancer.’ Awareness of sarcoma can have an impact on many different aspects of someone’s experience of the cancer. The more someone knows about sarcoma, the more likely they are to get any treatment they might need quickly.

Our first national survey was able to use data to quantify something abstract like ‘awareness.’ It showed that 75% of

the general public don’t know what sarcoma is and 30% have no idea what a symptom of sarcoma could be. This data give’s a clear picture of the level of awareness, but also form a baseline to measure the impact of our work against.

It’s important to measure the impact of our work and data is the tool we use to do this. To successfully increase sarcoma awareness, we need to make sure that we’re getting our message to the right people at the right time. Collecting data, especially digital data, allows us to effectively measure how many people are hearing what and when.

More importantly, it allows us to understand what our supporters want and need from us. Your voice counts, and one of the ways we listen to it is by analysing what our followers are engaging with online. Before, people could vote with their feet. Now it’s with their eyeballs, likes and link clicks. By collecting data about how many likes, shares and clicks a social media post has received we can see what content is useful and enjoyable, so that we can produce more of it.

Data’s ever prevalent use may seem like the world is heading towards more numbers and less words, machines and not people. At Sarcoma UK it’s at the heart of what we do, helping us to fund vital research and better support everyone affected by sarcoma.

Enda Guinan, Digital Communications Manager: “At a time when people are more likely to be protective about their information, people who do choose to share their data show a real generosity - a willingness to help many others benefit. This kindness is all the more remarkable given that they themselves may not directly benefit.”

Connect Sarcoma UK Winter 2019

A new dimension to our Support Line

Since opening in 2016, our Support Line Specialists have helped more than 1,560 people, responding to over 5,400 emails and phone calls. Since expanding the team earlier this year, not only have we been able to extend the opening hours, but also increase the range of support we can offer.

Bringing more than 20 years of experience in occupational therapy, Joshna Hirani has been a huge asset to the Support Line and to the users she helps.

As well as being there to listen to and support users as Support Line Advisor, Joshna provides practical advice on how to manage the challenges of sarcoma and its treatment. She helps users to discover their strengths and build positive coping strategies that enable them to make the most of their everyday lives, understand (their often new) needs better and learn how to help themselves.

Those affected by sarcoma, whether as a patient or as a loved one, can experience very rapid changes to their lives. Just like our Support Line is open to anyone affected by sarcoma, you don’t have to have sarcoma yourself to benefit from the help of occupational therapists. Regardless of your connection to sarcoma, they can support you to get yourself into the best place mentally and physically before treatment begins, cope with the challenges of treatment, or get back to your everyday life after sarcoma.

Joshna, Sam and Helen are here for you to answer any question you might have about sarcoma, no matter where you are.

Our Support Line is:

• Independent and confidential

• We believe no question is a silly question

• We lend a listening ear

• We can point you in the right direction

Call us during our opening hours or leave a message and we’ll get back to you. You can also email us at [email protected]. You can ask us anything about sarcoma, whether you’re a patient, partner, carer, colleague or friend, or if you have found a lump and you’re concerned.

Our opening hoursWe are now open from 10 am until 3 pm, Monday to Friday.

Call us on 0808 801 0401 during these hours or leave a message and we will get back to you. If you would prefer to contact us by email, the address is [email protected]

17


This Christmas Sarcoma UK is creating an inspirational wall of stars with messages of love and hope sent from you to a loved one.

Share a star, share love and hope this Christmas.

We hope you will join us this Christmas by sending a donation along with your star and personal message that:

Shows your support for someone living with sarcoma

Raises awareness of this rare cancer

Is in memory of a friend or loved one

Is in hope, that a cure will be found

Your star, along with others from people in the sarcoma community, will be displayed at our carol concert at St Paul’s Church, Covent Garden on 11 December 2019 and our central office in London.

If you would like to leave a Christmas gift to Sarcoma UK, you can do this by filling in the slip below and returning it to us in the Freepost envelope provided, along with your star and message of hope.

All Christmas gifts will support our vital work.

A gift of love and hope this Christmas Here is my gift of:

Your donation will help change the lives of people affected by sarcoma and their families by helping to fund Sarcoma UK’s support services, research projects and campaigns.

I enclose a cheque or postal order made payable to Sarcoma UK OR

Please debit my Visa/Mastercard/CAF Charity Card with the amount specified above

Card no.

Expiry date /

CVV number (last three digits on your card’s signature strip)

Alternatively, you can donate by calling us on 020 7250 8271 or visiting our website: sarcoma.org.uk/donate.

Name

Address

Town

Postcode

If you do not want to receive updates from Sarcoma UK about how your donations are supporting us, please tick here (please note we will use your postal address for donation acknowledgment and receipt).Please send this form, along with your gift, in the Freepost envelope provided or to: Freepost RTAA-JJEE-XAUG, Sarcoma UK, 49-51 East Road, London N1 6AH.

Sarcoma UK is committed to protecting your personal information. Our legal basis for collecting and processing personal information as set out in our Privacy Policy is based on the legitimate interest of Sarcoma UK. We have short retention periods and strict processes for the storage and subsequent, secure disposal of sensitive, financial data. To find out more about how we handle, and store your personal information and how to amend, remove or request a copy of any personal information we hold about you, please visit sarcoma.org.uk/privacy-policy

I want to Gift Aid my donation and any donations I make in the future or have made in the past four years to Sarcoma UK. I am a UK taxpayer and understand that if I pay less income tax and/or Capital Gains Tax than the amount of Gift Aid claimed on all my donations in that tax year it is my responsibility to pay the difference.

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

sarcoma.org.uk

uk.sarcoma@Sarcoma_UK@Sarcoma_UK

Sarcoma UK is a national charity that funds vital research, offers support for anyone affected by sarcoma cancer and campaigns

for better treatments.

020 7250 8271sarcoma.org.uk

uk.sarcoma@Sarcoma_UK@Sarcoma_UK

Sarcoma UK is a national charity that funds vital research, offers support for anyone affected by sarcoma cancer and campaigns

for better treatments.

020 7250 8271Registered as a charity in England and Wales (1139869) and Scotland (SC044260). A company limited by guarantee in England and Wales (7487432)

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