Ellie's story

Ellie Waters, a medical student at Keele University, was diagnosed with alveolar rhabdomyosarcoma aged 14. She explains how it influenced her ambition to become a doctor, the impact of her cancer and why it’s so important to raise awareness of the issues that young cancer patients face.

I was diagnosed with cancer in September 2015, having first noticed a small lump on my left butt cheek around six months before. As it wasn’t really causing me any bother, I didn’t really worry about it. However, over the following months, the lump got bigger, and I then started having other symptoms, including tiredness. I was also quite a keen cross-country runner and noticed that whenever I ran, my left leg was in a lot of pain.

I was also constipated, which was my main problem, but I never linked the growing lump to those symptoms, and always thought they were separate things. I was only 13/14 at the time, and as the lump was in such an embarrassing area, I just kept it to myself. It wasn’t until a few months later that I told my mum I had this lump, which by this point had become rather big. I was struggling to sit down on it and was generally feeling quite unwell.

We’d already been to the doctors because of the leg pain. I’d done a fun run, collapsing 2K in because of the pain. The doctors thought it was just a muscle tear and advised me to rest it.

It’s so important that if you notice anything wrong, or you think you have symptoms of cancer, then go straight to a doctor. It’s something that I wished I had done. Even if it’s in an embarrassing area, or you don’t want to worry anybody.

After I told my mum about the lump, I went to the doctor's again, and was told that it was an abscess and given antibiotics. They didn’t work and as I became more ill, I then saw a third doctor who looked at the lump and thought something wasn’t right. I ended up going to emergency surgery that day to remove the lump which was thought to be abscess. But, when they opened it up, they discovered it was a tumour.

I underwent CT scans and blood tests at my local hospital and when they were quite sure it was cancer, I was transferred to Queen’s Medical Centre in Nottingham. I was then diagnosed with stage 4 alveolar rhabdomyosarcoma, a soft tissue cancer. I underwent 18 months of treatment, with the first nine months being intensive chemotherapy, with 28 sessions of radiotherapy sandwiched in, too

The impact of my cancer

Having cancer as a teenager was especially tough, because everyone says their teenage years are difficult anyway, but when you throw cancer into the mix, it’s very hard. At 14, you want your freedom to go to house parties and out with friends, but then suddenly these things are taken away from you.

It affects your body image as well - losing all that weight, losing your hair. The treatment also really halted my puberty, too. I didn’t look my age, and still l looked quite childlike and that affected me mentally.

I also felt that I couldn’t talk to people my age, as my life revolved around hospital, when I had to take medication, and whether I would have enough energy to do my maths lesson that day. I suddenly felt quite isolated and soon enough, my only friends were my cancer friends, as they were the only ones that really understood.

I was diagnosed in my first year of GCSEs and consequently missed the whole year. I didn’t want my cancer to affect my GCSE results and prospects further down the line, so I made the decision to repeat Year 10. I coped with everything by throwing myself into studying and revising with my dream of becoming a doctor keeping me going. I realised after I finished treatment that I was watching a lot of medical documentaries and I was really interested in medicine and wanted to pursue this career. I’m thankful it’s led me on this path because I love helping people, it’s everything to me.

Late effects of my treatment

When my treatment finished, I had quarterly check-ups for the first two years, which usually entails an MRI and chest X-ray, because you’re most likely to relapse within that time. I also had lots of other issues going on. Due to the radiotherapy to my pelvis, I developed bowel issues. I was losing weight because I wasn’t absorbing food properly and getting very bad irritable bowel symptoms.

Six months into remission it also became apparent that I’d gone through the menopause. At the time, it didn’t seem like a big deal because as far as I was aware the menopause just meant I didn’t have periods. As my treatment had made me infertile, I didn’t think this would affect me, but there were so many other symptoms of the menopause that I hadn’t realised, like tiredness, hot flushes and bone problems.

I also felt that I couldn’t talk to people my age, as my life revolved around hospital, when I had to take medication, and whether I would have enough energy to do my maths lesson that day. I suddenly felt quite isolated and soon enough, my only friends were my cancer friends, as they were the only ones that really understood.

So, I had all these issues, and the difficulty is that when you’re in remission, you don’t know if some of your problems, like tiredness or achey joints, are long-term effects of treatment that will go, or a problem that is just starting that you will have chronically.

I found this difficult but didn’t want to complain as I’d survived my cancer. But equally, I’d been thrown back into ‘normal’ society again and though I looked like everybody else, and my hair had grown back, I felt so different to others. I felt like an alien and was carrying the burden of all these chronic health problems.

Raising awareness

Before cancer, all my hobbies were sports related, so my mum suggested I find a new one when I could no longer do them, especially if I was at hospital. I was in an awful situation, which I wanted to turn into something positive, to help others like me. I started writing a blog, which gradually evolved into creating digital content, to help raise awareness of cancer in teenagers and its effects.

I found this extremely cathartic: it gave me a sense of purpose and allowed me to reach out to other young people who had cancer and use my experiences to help other people. It’s important to me to give other young people who are undergoing, or who have finished, treatment hope that there is life after cancer.

Always seek help if you’re worried

It’s so important that if you notice anything wrong, or you think you have symptoms of cancer, then go straight to a doctor. It’s something that I wished I had done. Even if it’s in an embarrassing area, or you don’t want to worry anybody.

You think you’re invincible when you’re a teenager. I thought this growing lump would go away, and it didn’t even cross my mind that it could be cancer. So, if you see any changes, any problems, you’ve got anything new, then go to your doctor’s.

Why young patients’ voices should be heard

It’s important to help people understand the unique set of issues and problems that TYA cancer patients face, so support for them can evolve. It’s very much a transition period, where you go from being a child and dependent on your parents to becoming an adult and leading your own life. To have a cancer diagnosis in the middle of that can be very distracting. I know a lot of people that have found it difficult to go back into education after cancer or have missed a couple of years and that’s really affected them.

You think you’re invincible when you’re a teenager. I thought this growing lump would go away, and it didn’t even cross my mind that it could be cancer. So, if you see any changes, any problems, you’ve got anything new, then go to your doctor’s. 

Or, after treatment, they may suffer from brain fog or chronic fatigue, and that makes that transition back into education or employment very hard. When you’re an adult you have that established career or whatever you may have to fall back on, whereas as a young person you’re often just starting out on your journey. Ultimately, it will affect people’s financial prospects, particularly if you have cancer treatment and develop a disability, chronic illness or mental health problems. It’s inevitably going to impact you.

At a time when you’re meant to be thriving in your independence and freedom, you’re held down by quite a lot of factors. For me, the financial responsibility I shoulder while at uni because of my health issues is greater than I expected. I still have a lot of appointments back in Nottingham and pay for the train to get there, or buy prescriptions, so there’s that financial burden.

I always say that cancer doesn’t end when treatment finishes. Cancer still affects me in some way every day, and it takes a real extra mental resilience to get through that.

I always say that cancer doesn’t end when treatment finishes. Cancer still affects me in some way every day, and it takes a real extra mental resilience to get through that. I still have pains and feel tired. At university, I’m surrounded by energetic 19-year-olds who can go out and party and rock up to lectures, and that made me feel even more isolated and a little envious of them. I wish I could keep up with them or not have to say, ‘I can’t do that’.

It’s important that people know just how much cancer does impact a young person’s life, both during and after treatment. It should be a time when you’re starting to establish the next steps of your life - whether that’s school, college, university, or a career - but when you’re living with all the side effects from treatment, navigating that path be quite difficult.

It’s important that people know just how much cancer does impact a young person’s life, both during and after treatment. It should be a time when you’re starting to establish the next steps of your life - whether that’s school, college, university, or a career - but when you’re living with all the side effects from treatment, navigating that path be quite difficult.

To support young cancer patients, you don’t necessarily have to understand what they’ve been through, but just be there to listen, don’t revalidate the person’s feelings and allow them that open space to talk about their emotions.

My message to other young cancer patients

If any young patients are reading this, the best advice I can offer you is to take each day as it comes and don’t worry about the future too much because if you do, you’re going to get yourself into a really dark place. And don’t bottle up your feelings - if you do have anything to get off your chest, then make sure you speak to someone.

Follow Ellie on Instagram @teamellie_blog