Cancer Research UK – Science blog

This April is the UK’s first Teenage and Young Adult Cancer Awareness Month. We’re coming together with other charities across the country to raise awareness of the unique challenges faced by young people with cancer – challenges that can shape the rest of their lives.

From the very start, it can be more difficult for teenagers and young adults to get a diagnosis, access appropriate care or take part in research. Then, on top of the stresses of growing up, they also have to cope with the emotional impact of cancer and manage the side effects of treatments that might not be designed for their bodies.

Throughout the month, we’ll be highlighting just why better awareness of these issues is so important, as well as spotlighting the work we’re doing to lessen their burden. We’ve also published a new ‘About Cancer‘ page that makes it easy to get information on teenage and young adult cancer types, symptoms, treatments, research and support.

First, though, to show what teenage and young adult cancer is really like, we’re speaking to four supporters about their personal experiences. Here are their stories:

Fatimah: “People don’t understand the stigma”

“Being diagnosed as a teenager is more complicated than just the cancer and the treatment.

“It took me a year to be diagnosed, and I got that diagnosis at 15, when I was in my GCSE year. I went from getting top grades to having to miss my mock exams and my grades just dropped.

“I felt such pressure, especially because I am from an Arab background and my family was quite strict on that academic focus.

“People don’t understand the stigma. It’s not just about hair loss – it affected my whole body image. You can fluctuate between gaining weight, and then becoming skeleton-like – I didn’t want to leave the house.

“I found it really difficult to speak to friends – there was this line between us and I couldn’t relate to them. It’s understandable, but it’s sad. I found myself speaking to other teens who were diagnosed.

“From when I was first diagnosed, I was hearing everything myself. My parents don’t speak a lot of English, so I was in the appointment and reading the letters. It was upsetting watching them find out, as they had to have things translated so there was a time-lapse as they found out what was happening.

Fatimah had a year of chemotherapy as part of her cancer treatment.

“My diagnosis was an aggressive sarcoma, a soft tissue tumour in the ribs.

“I had to have a year of chemotherapy, and I had to stay at a hotel next to the hospital. It was a lot to process at that age.

“Then I had radiotherapy and two operations – one major and one smaller procedure. And I am still waiting for more surgery now, as they were not able to do everything they needed to initially.

“And when treatment is finished, there is an expectation that you are back to normal. There are still appointments, MRIs and worry – you can never go back to the person you were before. I’m 19 now, but think you need a lot more support after cancer, and I don’t think people are aware of the impact at this age.”

Adam: “It can come out in different ways, sometimes years later”

Adam was diagnosed with non-Hodgkin lymphoma aged 14. He is now 23.

“I was diagnosed because I was very sporty and found I was getting out of breath. It was initially put down to my asthma, but I went back and forth to the doctor several times over the following months.

“I appreciate why they did not immediately start investigating cancer, but, after I had been in a few times, I think it should have been looked at more. My parents knew that something was not right, and we knew it wasn’t the asthma as that was under control, but we had to ask for a referral to get a chest x-ray.

“As I was 14, I was old enough to know what was going on. I understood things and was involved in the decisions. But I think I was also young enough to have a naivete about it too.

Although he was 14, Adam was treated on a ward with much younger children.

“My experience in hospital was that I did not quite fit between the children’s ward and the teenage one – the teenage unit had just opened but you had to be 16 so I couldn’t go. I was lucky that there were Xboxes on the ward so I spent a lot of time playing those.

“I have been lucky in respect to physical side effects. I do have some and I am yet to look into whether my fertility has been affected, but I have definitely faced mental side effects and particularly survivor’s guilt.

“As a teen, I created strong friendships on the wards and I have kept in touch with friends and we are connected via social media. I think you are so aware of what is happening to others in your age group, and when people relapse or pass away it really affects you.

“It was not consciously on my mind – it’s more subconscious, but I can find it hard to focus – I remember especially after I had been to my friend’s funeral when I was at college. I had work to do but I found myself just staring into the laptop screen, thinking about everything and asking what was the point.

“A diagnosis at that age is a lot to take and I think it can come out in different ways, sometimes years later.”

Alice: “All of these issues likely arose due to my cancer treatment”

Alice was diagnosed with acute myeloid leukaemia aged 15. She is now 28, and has been cancer-free for 12 years, but suffers greatly from long-term side effects.

When her cancer relapsed, Alice had to have very intensive treatments.

“From the start, I was always included in discussions and decisions alongside my mum. I was quite feisty and self-advocating from a young age. This forced me to grow up even faster.

“I started treatment in 2009 and went into remission, but relapsed six months later. In January 2011, I had a bone marrow transplant, with high-dose chemotherapy and total body irradiation.

“After that, I suffered with graft versus host disease (GvHD) in different places, including my eyes, skin, and kidneys, so I was on high-dose steroids for a few years. These have nasty side effects too. They killed tissue in both knees and wrists, and caused cataracts in both eyes.

“I needed to have surgery to deal with all these issues, but that wasn’t possible with steroids. Every time I was almost off them, the GvHD would flare up, so I’d have to go back up to a high dose, and the seemingly never-ending cycle would start again.

“Eventually, after a year on crutches and another in a wheelchair, I had double knee replacements in 2014. They’ll need replacing again soon.

“Then I had to have half of the carpal bones removed from my right wrist, which severely limits my range of movement. My other hand suffers from numbness. And I had cataract surgery in both eyes, as well.

“I went into menopause after my transplant at the age of 16 and am now on HRT. I’ve been completely infertile ever since.

Alice has required a series of operations in the years following her diagnosis.

“Also, the radiation led to a severe growth hormone deficiency. I have to take refrigerated injections every night to treat it.

“I had a small basal cell carcinoma removed from my forehead in 2020 and my gallbladder removed in 2021. In January, I had surgery on my oesophagus. I’m currently awaiting surgery for my sinuses and uterus.

“All of these issues likely arose due to my cancer treatment. I haven’t even started on how badly my mental health has been affected.

“People have said to me, ‘Oh, you’re cancer free, forget about it and move on with your life,’ but it’s so much more than people realise.

“People who are my age have such different lives from me, with children and holidays. I’d love to drop everything, travel the world, and go backpacking, but how am I supposed to do that with medications and the nightly injection that needs to be kept cold?”

“I still have the rest of my life to live. I don’t want to have to constantly settle for what’s manageable. Others shouldn’t have to either.”

George and Penny: “He was so often alone on that ward”

Penny is part of the Cancer Research UK for Children & Young People Insights Panel.

George was treated for cancer as a very young child and then again as a teenager.

Penny’s cousin George was first diagnosed with rhabdomyosarcoma when he was only 2 years old. George, who had a hereditary genetic condition called Li Fraumeni Syndrome, underwent treatment but the cancer came back twice, and he sadly died when he was 17.

Penny said: “It was so different for George when he was diagnosed with osteosarcoma at 15 from when he had been a baby. When he was younger, the doctors were speaking to his parents, but when he was older, he was in the room and involved in the decision-making. He had to hear so much more and had to face his own mortality.

“He was on a children’s ward then too and he was caught in between. I know he felt very isolated at such an important age. He had friends who visited but he was so often alone on that ward with the younger children.

“I know there are more teenage units now and it’s so good to see that there is more recognition for the different needs of young people diagnosed at this age. George would definitely have approved.”

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