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What’s it like to be diagnosed with cancer as a teenager?

by Tom Bourton , Tim Gunn | Personal stories

2 April 2024

4 comments 4 comments

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Issy, Jake and Joram, who shared their stories with us for Teenage and Young Adult Cancer Awareness Month.

April is Teenage and Young Adult Cancer Awareness Month.

Issy, Jake and Joram were all diagnosed with cancer as teenagers. They were growing up, going through the world-shaking changes that turn children into adults. They were also making regular trips to hospital wards, being treated with drugs that made their hair fall out.  

Now, to help other teenagers and young adults like them, Issy, Jake and Joram are sharing their experiences and advice. They’re letting us into the moments that helped them understand life with and after cancer – moments they looked forward to, and moments that helped them look forward again.

Around 2,300 teenagers and young adults aged 15 to 24 are diagnosed with cancer every year in the UK. That’s more than 6 people every day. This article is just a morning’s worth of stories.

We’re working hard to take on the unique challenges behind every teenage and young adult cancer. As you read, look out for these purple boxes, where we’ve highlighted some of the ways our research is helping teenagers and young adults with cancer live longer, better lives.

Find out more about teenage and young adult cancers here.

Issy’s moment: Regaining her confidence

Issy, 17, from South Wales, was diagnosed with metastatic Ewing sarcoma in February 2023.

I was unable to walk at the time of my diagnosis because of the size of the tumour in my right femur, so I had to use a wheelchair. I was on lots of pain medication, but it was still so painful. I had a cycle of chemotherapy every other week and, after four cycles, I was able to walk short distances using crutches. As treatment continued, I gradually regained the ability to walk without crutches; it was fantastic to be able to move and have a bit of independence back. 

Issy the day after she was diagnosed with metastatic Ewing sarcoma.
Issy wasn't able to walk when she was first diagnosed.

Losing my hair was tough and I know it’s hard for a lot of teenagers, but I was so thankful to the Little Princess Trust for the wonderful free wigs. Getting a wig meant a lot for me because it gave me the confidence to go out rather than hiding away.  

In June 2023, I had surgery to have one of my ovaries removed for cryopreservation because I had to have radiotherapy on my pelvis and there was a risk it could affect my fertility. It felt really strange having to make fertility decisions at 16 years old. I had the surgery two weeks before I had a ticket for the Harry Styles concert, and was hoping that I would be well enough to go to the gig. I recovered well and was over the moon that I was able to see Harry. I’m sure I even cried a little. Happy tears of course!   

Our work to protect fertility

Being treated for cancer as a teenager or young adult can affect your fertility, whether you’re male or female. But standard ways of preserving fertility, like storing sperm and eggs, aren’t always possible for younger people.

So, to help Issy, doctors removed and froze one of her ovaries. This meant it was protected from any possible side effects of her radiotherapy. This procedure, called ovarian tissue cryopreservation (OTC), can also be used to prevent damage from chemotherapy.

One of our researchers, Dr Kathleen Duffin, recently led a study to help make sure OTC is offered to everyone who can benefit from it. She’s an expert on how cancer treatment can affect fertility in children and young people. She’s also working to make a similar treatment, called testicular tissue cryopreservation, an effective option for restoring male fertility after cancer treatment.


My last chemo was significant too. It was bittersweet. Over the eight months I had treatment, I was in hospital every week and it had become my second home. Going to hospital became part of my routine and losing that routine made me a bit like “What do I do now?”  Now that treatment has finished, I have a lot more time to think about what I have been through and it’s a lot to process – it’s heavy stuff!   

I also think it’s important to say that just because treatment finishes, that doesn’t mean it’s over. Things don’t just go back to ‘normal’. I’m still having regular medical checks and recovery takes longer than I realised it would. I still get so mentally and physically tired, and it takes me longer to do things.   

Music is really important to me. I had my headphones on all the time. I also took posters of my favourite artists into hospital and hung them on the wall to keep me going.

If I could give any advice, it would be not to be harsh on yourself and to focus on the small things. I would book concerts to give me things to look forward to. I loved seeing Niall Horan in March. He saw my sign that said “3 months cancer free” and he spoke to me, which was amazing!

- Issy's advice

Jake’s moment: A new phase of treatment

Jake, 19, from Bedfordshire, was diagnosed with acute lymphoblastic leukaemia (ALL) in July 2022.

Finishing intensive treatment was a great moment, but it was also the most scary. I’d been looking forward to it, but then it was such a drop going from having treatment five days a week to once a month. There was a sense of security in the regular treatment and it took a couple of months to get more relaxed and build up my confidence after that.  

Jake at his school prom.
Jake focused on recovering in time for his school prom.

The end-of-year prom was coming up during those months. I really wanted to go, but I kept worrying that I wouldn’t be able to because of a complication or infection. My blood counts were getting better, so it was looking hopeful, but I was on edge in case of a problem. When the day came, I was delighted that I could go. It was great to be there and I didn’t look or feel different to anyone else.  

As well as big things like the prom, I have also enjoyed being able to do boring stuff again without having to think about cancer – like going to the gym. It’s been amazing to just do normal, routine things again, and to look forward to things. I started uni at Aberystwyth in September and I am really enjoying the course and student life.  

It’s important to let yourself have bad days – you can’t be positive all the time. There is nothing wrong with days where you are sad – cancer and treatment is not a nice thing, so don’t be too hard on yourself.

- Jake's advice

Stopping acute lymphoblastic leukaemia from coming back

Jake is now receiving two years of maintenance chemotherapy, a less intensive course of treatment designed to stop his cancer from coming back or relapsing. We’re currently funding work that could make it more effective.

Thanks to discoveries made by our researchers in the 1970s, we know that there are multiple sub-types of ALL. Each one needs to be treated differently to give people the best chance of a healthy recovery. Our AllTogether-1 trial, which is open to 1 to 29-year-olds, is taking this personalisation further: testing different treatments based on each individual’s risk of relapse.

This approach could both reduce the side-effects of ALL treatment and stop more cases of ALL coming back.

Joram’s moment: Recognising himself

Joram, 17, from Edinburgh, was diagnosed with Hodgkin lymphoma in June 2023.

It may sound silly, but a happy moment for me was when my eyebrows grew back. I lost my hair in the first month of chemo and my eyebrows went too – they said not everyone loses their facial hair, but it all went together. I had had really long hair in braids and a beard. It was so weird looking in the mirror at that time, with no hair and my face so much bigger from the steroids.  

I didn’t recognise myself and that was really unsettling. I was still at school and I would get lots of questions. When it all started growing back, it was thin hairs at first and then it grew thick, then it was more normal. In February, I started to see a more normal version of myself in the mirror again. That was a relief.  

Joram in hospital.
Joram had to defer going to university, so he went back to his school routine.

Another moment was when I got my appetite back, after chemo really messed with everything. I used to love Chinese food and some friends brought me a takeaway.  I was looking forward to it, but when I started I realised I couldn’t eat it. Chemo had changed my sense of taste. They had done such a nice thing bringing me the food, and I couldn’t enjoy it. So, when I was off the chemo and I started to be able to enjoy Chinese flavours, and curry, again that was a good feeling! 

I am enjoying being back in school too. I had to defer my uni place last September but it’s been good to return for another year and have that routine. I am looking forward to starting Chemical Engineering at uni in Edinburgh this year. It will be good to be back on track. 

Having cancer is tough, and you’re almost in denial that it’s happening. I want to share that you did nothing wrong to get cancer and you absolutely do not have to explain your condition to everybody. Accept the support you can get, because keeping these feelings and emotions bottled up can only lead to more panic, more anxiety and more worry.

I was ready to move out and be more independent, so it was hard to take steps backwards and have people do things for me, even changing my bedsheets. But I realised I did need that help, and that family and friends were there for me, to give me support, and that I should take their support.

- Joram's advice

Hodgkin lymphoma treatment

In the 1970s, our scientists found the most effective combination of chemotherapy drugs to treat Hodgkin lymphoma. They helped us reach the point we’re at today, with more than 9 in 10 children and young people in the UK now surviving this type of cancer. Usually, they receive a combination of chemotherapy and radiotherapy.

More recently, our researchers have focused on keeping Hodgkin lymphoma treatment as effective as possible while lowering its side effects.

So far, evidence from the EuroNet PHL studies, which we helped fund, suggest that when people respond well to treatment with COPDAC and DECOPDAC, the chemotherapy combinations Joram received, they may not need radiotherapy. This helps reduce long-term side effects associated with radiation treatment, like heart problems.

Find out more about Teenage and Young Adult Cancer Awareness Month

This is the second ever Teenage and Young Adult Cancer Awareness month. Last year, we highlighted four more stories of teenagers and young people affected by cancer, the difficulties they face waiting for a diagnosis, and how we’re using research to meet their unique needs.

That’s not all. Cancer Grand Challenges recently awarded two international research teams up to £20m each to develop better ways of treating solid tumours like Ewing sarcoma in children and young people. We covered the incredible story of the young girl who helped shape team KOODAC and their groundbreaking new drugs.

If you want to share your story, like Issy, Jake and Joram have done, you can apply to become one of our media volunteers through our Share your Story page.

And our Cancer Research UK for Children & Young People Star Awards are open to all under-18s. Click here for more information and our nomination form.

    Comments

  • ujjwal
    19 June 2024

    i think i wasnt the blessed one after all. got bone cancer in right knee last year. had to amputated my right leg so i could live better life. honestly getting cancer in teenager might me one of the difficult things you might have to go through. if you got cancer, dont worry. we’ll go through it together. Be strong.❤️

  • Sue
    17 April 2024

    Absolutely inspirational people all 3 of them and at such a young age .Wishing you all health and happiness for your future years, you all deserve it as do all cancer survivors. Keep strong and positive and have faith in the wonderful people who make this all possible as we did through my husbands journey.

  • Judit Csere
    11 April 2024

    Absolutely moved by these youngster`s courage and perspective! They coped so well! It is interesting how in these life or death situations people crave the most normal, small things: a Chinese takeaway, going to the gym, being able to attend a gig or prom. It makes me want to pay attention and be more grateful for the small everyday things in my life that are going ok.

  • Rends Rogers
    8 April 2024

    Brilliant how these young people coped. I have been a cancer case severa;l times. But it is so cruel than young people suffer too. It makes one question one’s religion, if you have one.

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    Comments

  • ujjwal
    19 June 2024

    i think i wasnt the blessed one after all. got bone cancer in right knee last year. had to amputated my right leg so i could live better life. honestly getting cancer in teenager might me one of the difficult things you might have to go through. if you got cancer, dont worry. we’ll go through it together. Be strong.❤️

  • Sue
    17 April 2024

    Absolutely inspirational people all 3 of them and at such a young age .Wishing you all health and happiness for your future years, you all deserve it as do all cancer survivors. Keep strong and positive and have faith in the wonderful people who make this all possible as we did through my husbands journey.

  • Judit Csere
    11 April 2024

    Absolutely moved by these youngster`s courage and perspective! They coped so well! It is interesting how in these life or death situations people crave the most normal, small things: a Chinese takeaway, going to the gym, being able to attend a gig or prom. It makes me want to pay attention and be more grateful for the small everyday things in my life that are going ok.

  • Rends Rogers
    8 April 2024

    Brilliant how these young people coped. I have been a cancer case severa;l times. But it is so cruel than young people suffer too. It makes one question one’s religion, if you have one.