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ZEISS microscopy via Wikimedia Commons/CC BY-SA 2.0 

The number of children dying from cancer each year in the UK has fallen in the last 20 years, according to new statistics published last week.

Research has been at the heart of this progress, helping more children survive cancer today than ever before.

But sadly, around 240 children still die from cancer every year. And for those that survive, there are often life-long treatment-related health problems to be dealt with.

We’ve written before about some of the long-term side effects children and young people with cancer experience.

But one we haven’t tackled is fertility.

In this post, we hear from four young people diagnosed with cancer about how they felt when they were told they may never have children.

‘I was resolved to the fact that I’d never have children naturally’

At 19, Claire was diagnosed with Hodgkin lymphoma.

“The doctors spoke to me about fertility straight away. Surprisingly, it was a relatively positive conversation – I was told the risk of becoming infertile was pretty low,” she says.

The doctors mentioned at that point that there was an option for Claire to store embryos.

“I decided not to do that as they were confident I would be ok, and it seemed like a huge procedure for what was presented as a low risk. Plus I had only been with my boyfriend at the time for three months! I just didn’t follow up on it – it wasn’t a priority.”

Despite treatment working to begin with, the cancer soon came back. And it was more aggressive than the doctors thought.

Fertility was discussed again, but this time the conversation wasn’t a positive one.

Claire remembers: “The doctors told me there was a good chance I’d become infertile. Fertility treatment was mentioned again, but having any would delay the chemotherapy and the stem cell transplant, and it was a risk to do that.

“It was hard to deal with. It felt like I was being asked to choose between my life and the life of any future children I might have.

“But at that moment, there was no point having eggs in the freezer if it meant I was not going to be alive to do anything with them.”

Over the next 18 months, Claire had chemotherapy, radiotherapy and a stem cell transplant.

It worked. Claire’s cancer was successfully treated.

But after finishing treatment, Claire began experiencing hot flushes, was tired all the time and wasn’t having any periods.

claire-pics-82

Claire with her children Jackson and Teddy

“I was sent to an endocrinologist for some tests,” she says.

“The results showed I was in early menopause and I wouldn’t be able to have children”

Claire was only 21.

“I went for counselling and was told that I should grieve for the children I’d never have. It was tough, but eventually I resolved myself to the fact that I’d never have children naturally.”

Not long after this, when she was 22, Claire met her now husband Stephen.

“We knew we wanted children, so we discussed the options available to us – things like egg donors and adoption. We had joint counselling too which really helped.

“We knew that it could take us years to have children and that it could be a difficult process. It was so frustrating and I hated it.”

But that’s not how things turned out. Against the odds, Claire became pregnant at 25.

“After a few days of feeling unwell and my breasts being tender, my mum asked if I might be pregnant.

“I told her absolutely not! I was on the pill (as a form of hormone replacement therapy) and I’d been told I was infertile!”

But when she didn’t start to feel better, Claire sent Stephen to buy a pregnancy test.

“He was so uncommitted to the idea that he bought the cheapest one!”

It came up positive. One more (expensive) pregnancy test and a trip to the doctor later, it was confirmed that Claire was pregnant.

“I couldn’t believe it. My first thought was ‘this wasn’t supposed to happen’. It was hard to take in if I’m honest.

“It was a huge shock. A good one, but still a shock.”

Claire gave birth to Jackson in 2011, after being induced because of heart problems caused by one of the chemotherapy drugs she was treated with.

Claire and Stephen then waited 4 years before trying for another baby. They were successful again.

In 2015, their second son Teddy was born.

“We were so happy when Teddy was born. I wasn’t supposed to be able to have children, and people didn’t know how long I’d be fertile for after Jackson.”

Even though Claire’s cancer treatment didn’t stop her having children naturally, it’s still affecting her now in other ways.

“The doctors have told me I can’t have any more children because it would put too much of a strain on my heart. They’ve also told me it’s highly likely I’ll go through another early menopause.”

‘Even then I knew I wanted to be a dad’

In July 2003, Greg was diagnosed with Ewing’s sarcoma.

He was 13-years-old.

“Being told I had cancer was a complete derailment. I was young, free and really active. I did karate and swimming and played tennis. But all of that got thrown to one side. I kept thinking ‘why me?’”

Over the course of 10 months Greg received chemotherapy and radiotherapy.

“Going through treatment felt like an eternity. I couldn’t play sports, socialise or do anything teenage boys do.”

Thankfully, the treatment worked and Greg was given the all clear.

One of the possible side effects Greg remembers having to think about was fertility.

“I was young, but I knew I wanted to be a dad. I was the last male who could carry on the family name. But the doctors were saying that might not happen.

“It was a really hard conversation to have with my parents, especially because I knew they wanted to be grandparents.”

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Greg with his partner Yasmine

After some difficult and awkward conversations with his parents, Greg decided to store sperm for the future.

“It’s not a conversation you imagine having with your dad, him asking me if I was ok and if I knew what I was doing. It was really tough for both of us.”

Years later, when he was 22, Greg decided to get his fertility checked.

“I went to my local hospital first to get checked after pressure from my then girlfriend. I was told I was fertile.

“I remember thinking I was really lucky.”

Around a year later, Greg got checked again.

“When I received a letter from the original place I had stored sperm after I turned 23 saying to come and get checked, I decided to go to be double sure.

“They confirmed I was fertile. It was such a relief to have that reassurance.”

Greg remembers: “I went with my partner Yasmine. Having her there was amazing. She was a fantastic support, and I know that even if I’d found out I was infertile it wouldn’t have made a difference. She would have stuck by me.”

Greg’s not the only one who’s pleased – his parents are “over the moon”.

By sharing his story, Greg hopes to encourage other young men who have had cancer to talk about their worries and fears.

“I know guys can feel embarrassed, but we need to talk about these things. I still have anxiety and fear that the cancer will come back, but it’s manageable now, and I talk to people about it.

“If I can inspire someone to open up and talk about their experiences, I’d be really happy. It’s important we talk about these things.”

‘It’s always at the back of my mind’

Now in her early 20s, Rosie was diagnosed with a germ cell tumour when she was a toddler.

“I know my parents had to sign all sorts of forms listing the side effects the treatments might have. I can’t imagine what that must have been like for them. They were so worried.

“Thankfully the treatment worked and I’m cancer free, but I still have check-ups and lung and hearing tests. And then there’s the physical and emotional effects of my cancer that still affect me every day.”

Rosie’s treatment, which included chemotherapy and surgery, has left her with dark patches on her skin and scars from the injections and operations.

“When I was a teenager I hated them. But now I’m proud of them – they’re a constant reminder that I’m a survivor.”

I might be able to have children easily, I might not.

-Rosie

Like others, Rosie’s worried about side effects that might appear further down the line.

“Fertility is definitely something which I have had to think about in the past and still do. For now, the doctors think I might be ok, but they just don’t know.

“That means I don’t know what might happen – I might be able to have children easily, I might not.

“The effects of my treatment mean I could have an early menopause, but there isn’t really a way of finding out if this might happen. There’s a lot of uncertainty and it’s always at the back of my mind.”

For now, all Rosie can do is wait.

“The doctors are going to tell me more at my follow-up meeting next year, and talk through my different options.

“I’ve always been told I should try and have children as early as possible in case there are problems. But it’s not that straightforward, I’m still young and there’s other things I have to think about too.”

We still have more to do

Sadly, for some who survive a childhood cancer diagnosis, they will never be able to have children naturally.

Kieran is one of those people.

Diagnosed with acute lymphoblastic leukaemia at the age of 7, he had multiple rounds of chemotherapy, radiotherapy and a bone marrow transplant from his brother Martyn.

He was finally given the all-clear when he was 12.

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Kieran is very close to his brother, sister, nieces and nephews.

“It was great news. I could finally start thinking about the future and stop thinking about what it would be like to die,” says Kieran.

But sadly, when he was 16, Kieran was given the news that he could never have children naturally because of his treatment.

“I was devastated,” he says. “Having children of my own was one of the things I most looked forward to in life.”

Kieran’s family have been a massive support to him throughout. “My brother and sister are great.

They make sure I see a lot of my nieces and nephews which means a lot. It fills the gap a wee bit.”

Now 29, Kieran still gets emotional when he thinks about what he’s been through.

“Having cancer, especially as a child, can have a massive effect on your mental and physical health. It never leaves me.”

We want to prevent what happened to Kieran happening to other young people treated for cancer.

We want to make sure that not only do more young people survive the disease, but do so with a good quality of life. Surviving is not the same as living.

We want to see a day when no child or young person diagnosed with cancer is ever asked ‘do you want to ever have kids?’ Or is told they can’t have children because of their treatment.

That’s why through campaigns like Cancer Research UK Kids & Teens, we want to fund more research to develop new, kinder treatments with fewer side effects.

And through our Star Awards, which launched this month, we aim to honour those children, teenagers and young adults who have been diagnosed with cancer.

Áine  

Comments

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Kellie November 22, 2016

My 15 year old has just been told that she is infertile having undergone tests post treatment for Ewing sarcoma last year. Not only has she lost her leg to the cancer, but she’s been robbed of an opportunity to reproduce. She is understandably devastated. So cruel.

Margaret Anne Thorold November 22, 2016

My husband had cancer when he was 6 months old and had a kidney removed. So we could not have any children which was very hard for us both. He also had prostrate cancer 3 years ago as well