An introduction to Sarcoma UK

Sarcomas are uncommon cancers that can affect any part of the body, on the inside or outside, including the muscle, bone, tendons, blood vessels and fatty tissues. 15 people are diagnosed with sarcoma every day in the UK. That’s about 5,300 people a year. Sarcoma UK is here to fund vital research, offer support for anyone affected by sarcoma cancer and campaign for better treatments. Our mission is to ensure everyone affected by sarcoma receives the best treatment, care, information and support available and to create the treatments of the future. sarcoma.org.uk

Transcript

Man – I think as a sportsman you tend to listen to your body, you tend to hear when things are wrong and the first hint that I had was playing football. I can remember stopping the car at home from one night and just having a sob basically because it just hurt that much and not understanding why.

Mother – Amelie has always had a love and passion for ballet. She’s always dancing. She’s always loved it. She was experiencing pain in her leg. The doctor at the time, quite rightly said, give her some Nurofen. If the pain goes away then don’t worry about it. But then, unfortunately the pain did go away.

Woman – I started getting pain when I was about 11 and throughout that whole time they never knew it was cancer. They thought it was a cyst, they thought it was psychological. Anything, but cancer.

Mother – I went to the doctor and their thoughts were exactly the same. Rest up. Come back in a couple of months, tell us it’s all better… It just wasn’t. It was then that I noticed a swelling in her leg, and then we did take Amelie to the doctor’s and at that point, they were very quick because there was clearly a problem.

Man – My doctor calls. His first words were something like, ‘don’t panic’. At that point, that’s absolutely the opposite of what you do. There was something in my bone. He was going to say some very scary words and sarcoma was one of those. I mean, it was hard. It was really, really hard that moment.

Woman – I was diagnosed with synovial sarcoma, in my right knee. Everything that I had planned to do in that year, because I was doing A-levels, I was like, I can’t do anything now. I just wanted to pass my driving test. Get into university. I was just about to send my application off. Everything was just stopped, to a halt.

Mother – He said to us ‘your daughter’s being diagnosed with Ewing’s sarcoma.’ And then about a minute later he says, ‘And it’s gone to both her lungs’. I couldn’t describe that feeling – you just want to scream. I did scream. You just feel like, I’m in a nightmare. Wake me up, this is not happening. But it is happening.

Andrea Slade (Advanced Nurse Practitioner at the Royal Orthopaedic Hospital NHS Trust) – I’ve been working with sarcoma patients now for… Nearly 25 years. Sarcomas are basically cancers of the building blocks of life, the structures that hold us together. Bones, soft tissues, muscles, nerves. All the structures that keep us upright basically.

Mother – When Amelie had pain in her leg, the last thing I would have thought of would be cancer because you think sickness, headaches, coughs, ill. You don’t think, just a bit of pain. Naively so, I had no idea.

Andrea Slade – I think one of the problems is, that there is so much occurring in young people which is completely normal. Which gives them leg pain. They’re growing, they’re quite often active, so all of these things can be explained away by much more common phenomena.

Richard Davidson (Chief Executive Sarcoma UK) – Because it’s so rare, and because there are so many different subtypes of sarcoma, it means that you could go your whole life without meeting anyone else with the same type of cancer as you.

Woman – At points, obviously when I was going through treatment I felt very lonely. I felt very confused. I felt very ‘out of it’. I thought, this was my bubble and this was everyone else… and there was just me here.

Mother – When you talk to people about sarcoma, it’s ‘what’s that?’. It’s not a childhood cancer that everybody knows about. It’s not like Leukemia. The doctors, it felt like, the professionals hadn’t heard of it. She should have been diagnosed a lot sooner.

Man – I suppose, if I was to ask anything different of the GP, was actually for them to do a proper physical exam.

Andrea Slade – Because sarcoma is such a rare cancer, GP‘s, typically, will see one sarcoma patient in their entire career.

Richard Davidson – Patients tell us that there is a lack of information, a lack of awareness amongst healthcare professionals. People have had to wait an awful long time before they’re diagnosed. And they’re all things that Sarcoma UK take very seriously and are trying to drive forward and change.

Man – I made a conscious decision on the first of January. That is the date when I’m going to start getting well. I basically forced my mum and my partner Selina to shave my head. It was kind of like, I can either take the choice that the chemotherapy takes it from me, or we can take it ourselves.

Richard Davidson – There are 16 specialist units for sarcoma patients around the country. It’s really important that a patient is seen at one of those specialist centres.

Shane Zaidi (Consultant Clinical Oncologist The Royal Marsden NHS Foundation Trust) – I think it’s absolutely essential that patients are treated within a specialist centre because we know that we have one shot at giving them the correct treatment, and if we get it wrong then the repercussions are that they will do worse.

Andrea Slade – Patients are referred in from very, very young infants up to their late 90’s. For sarcoma patients they’re often in hospital for prolonged periods of time having their chemotherapy.

Mother – She had 15 rounds of chemotherapy in total. So it lasted from the October right through to the end of May.

Andrea Slade – If the tumour is left undiagnosed for a long period of time, and the patient has a pathological fracture, it allows the tumour to spill which can result in bigger surgery and sometimes we’re not able to salvage the limb and they do end up with an amputation.

Mother – They told us about two weeks before Christmas that it would be an amputation. I still, actually didn’t believe it was going to happen until she went down into theatre.

Shane Zaidi – I’m acutely aware that when a patient comes to us they’re going to be very frightened about what their cancer journey is going to involve and part of the resources that we tend to use, include giving them literature from Sarcoma UK as well as direct them towards the helpline.

Woman – I heard about Sarcoma UK straight away, from the get-go, so there was the helpline and they had groups, local groups and you could go along have coffee and talk to other people about sarcoma, how you’re feeling.

Man – I think it will be really helpful. I’m quite looking forward to meeting other people and talking about those kind of situations and kind of sharing basically.

Helen Stradling (Support Line Lead Sarcoma UK) – Having been in the NHS and having been a sarcoma clinical nurse specialist, we know know how busy the clinical teams are and really it just gives a place where anybody that has any queries or questions can contact us and know that they’re going to get advice that is specialist knowledge, is up to date information and reliable.

Man – For me, contacting Sarcoma UK was a little bit of ratifying. You know, knowing that team is there if I don’t understand something. Especially when it comes to ‘hospital speak’. They have their own language.

Mother – Prior to her operation we did a lot of work with the physios on the ward and they had a teddy bear that Amelie, loved teddy bear anyway and they amputated the bear and put a dressing on the bear and put a little tutu on the bear. So it was trying to help her to understand what was going to happen to her but she was going to come out the other side and carry on being Amelie.

Andrea Slade – When we talk to patients about surgery it’s often quite complex and life changing. Sometimes people just have to rethink what their hobbies are. But there’s always those patients who are willing to prove us wrong and that’s lovely to see.

Mother – She’d had the surgery. She was lying in the bed. and, almost immediately I did not expect this emotion one bit. It was a huge sense of relief and I looked at Amelie and it was like, of course she’s still Amelie. The leg is nothing, the cancer’s gone. The cancer’s gone. Amelie’s Amelie – she’s still our little girl. So what? We can get a new leg. She’ll be fine.

Man – We’re a third of the way in. The mental side is tough. I, at the moment do not feel sick because of sarcoma, I feel sick because of chemotherapy. Although it might feel like it’s poison at the time, actually, it’s treatment. It’s something that’s gonna hopefully get me to the finish line and back on that football pitch.

Shane Zaidi – In cancers like breast cancer, lung cancer, we’ve got very new and exciting treatments, but unfortunately in sarcoma, our first-line chemotherapy drugs are still drugs that were developed 40 years ago. We need to do more research to improve outcomes for patients and that research needs to be done as a collaborative effort. Not just within an institution, but across different networks.

Richard Davidson – Sarcoma UK is the only national charity that funds research, provides information and support to those affected by sarcoma and campaigns for better treatments.

Woman – To people who do have sarcoma, I think it is really important to get in touch with Sarcoma UK. Having all that support, you don’t know how important it is. The more awareness there is, people can look out for signs. People can look out for signs for other people. That’s why I say, it’s really important for you to check.

Mother – Even if one GP is more aware that might save that one more life and by having a national charity to try and increase that awareness is just so important.

Man – The sarcoma is in my leg at the moment and you know, hopefully with treatment we can look at that end goal where I’m travelling again, I’m playing sports again. Those kind of things are the mental images that pull me through in the dark times.

Woamn – Now I’m at university. I got accepted. It’s crazy to think I’m here because this is all I dreamed of. It’s crazy to think all I wanted to do was be a university student.

Mother – After her surgery, Amputee bear was there. The ballet bar was there. That passion and that interest of ballet really helped her to see, actually I’m gonna be OK. I can still do this using one leg. She’s just so strong. She’s been… amazing.

Richard Davidson – We need supporters to come together, help us, raise awareness, fund more research and provide better information and support for sarcoma patients. They deserve it.