We need to talk about side effects

Today, more teenagers and young adults (people aged between 15 and 24) are surviving cancer than ever before.

But sadly for many of these patients, survival comes at a high price. This is because life-saving cancer treatments often have a long list of potential side effects.

Some of these will be immediate – hair loss, vomiting, scars from surgery.

Some – like secondary cancers and infertility – won’t show until later in life.

And then there are the side effects that no one really talks about: psychological problems, financial issues, social isolation.

These are just some of the things young cancer patients have to deal with later in life, and they aren’t always directly linked to having had cancer treatment.

We spoke to two young cancer survivors about the side effects they experienced following treatment, and asked how they think support for teenagers and young adults diagnosed with cancer can be improved.

“If the cancer’s fixed, you’re fixed” – Clara’s story

In 2001, when she was 4 years old, Clara was diagnosed with acute myeloid leukaemia. Over the course of the next year she had 4 rounds of chemotherapy and 7 operations.

Now 19, Clara is in remission.

Clara at the beach

But the treatment has left its mark.

“I have scars from where different tubes were inserted, and my teeth are really weak. No matter how much I brush, I still get cavities!

“And I have to go for a heart scan every 5 years for the rest of my life because heart problems are a potential side effect of some of the drugs I was given. It might sound inconvenient, but it’s nothing compared to what some people go through.

“I also get tired and achy really easily, and was diagnosed with chronic fatigue syndrome in 2013.”

The other side effect Clara developed was very bad pains in her legs.

“Ever since my first lumbar puncture I’ve had really bad nerve pain in my legs.

“In the beginning, mum kept telling the doctors I was in pain, but they would just say it was a side effect of the chemotherapy. We were told everything would hurt for a while and it could take up to a few years for the pain to go away.”

But it didn’t go away.  Fourteen years later Clara still develops pains in her legs.

“Sometimes it’s once or twice in a week; other times it happens once or twice a day. I’ve been on a variety of pain killers, including one that’s used to treat epilepsy.”

Clara is due to have an MRI scan soon to try and find the source of the pain, but feels it has come a bit late.

“I was really well looked after by some amazing doctors and nurses while I was in hospital. But I do wish something had been done sooner about my leg pain.

“For a long time I felt it wasn’t really taken seriously and I felt like I was going a bit crazy! I kept wondering: ‘Is this just what tired legs feel like? Is this normal?’ It would have been nice to have someone to talk to about it, but that was never offered.

I looked up to the nurses who looked after me

-Clara 

“There seems to be the mentality that ‘if the cancer’s fixed, you’re fixed’ – but that’s not the case. Not everyone will experience the same side effects.

“I’d like doctors and nurses to be more aware of this and to be more open to the unknown side effects that some, but not all patients, can experience.”

Clara started university this September and is training to become a paediatric nurse.

“It sounds like a cliché, but I looked up to the nurses who treated me and now I want to become that role model for someone.”

“I actually felt quite relieved when my cancer came back” – Katie’s story

Katie was 13 when she was diagnosed with Hodgkin lymphoma.

She had 9 months of chemotherapy, receiving two different chemo drug combinations – ChIVPP and ABVD.

“To be honest, the treatment wasn’t too bad. I was given it as an out-patient, which meant I could go home each day when I finished, even if that was 4am! I think it helped that my dad’s a nurse. The hospital staff knew that he could keep an eye on me.”

The treatment worked – Katie went into remission. But she did experience some side effects.

“I didn’t experience many physical side effects – I lost some of my hair but most of it stayed; it just became a bit wispy.

That was the first time I saw my mum cry

-Katie

“I did struggle in social situations, especially at school. When I went back after my treatment finished I hated it and most of the people there. I didn’t understand them and they didn’t understand me.”

Sadly Katie’s cancer returned in 2005.

“It might sound odd, but I actually felt quite relieved. It meant I didn’t have to go to school anymore.

“Everything was a lot harder the second time round. My outlook wasn’t as good and the treatment was much more aggressive. That meant I couldn’t have it as an out-patient, so I was in and out of hospital for around 4 months.

“And this time around I lost all of my hair. I’d be walking and gust of wind would blow bits out – it was really upsetting.

“Eventually, I took the kitchen scissors and cut it all off. That was the first time I saw my mum cry.”

But perhaps the biggest side effect Katie faced during her cancer treatments was mental health problems.

“When I started experiencing mental health problems, I didn’t want to talk to anyone about what I was going through or how hard I was finding things. I thought people would think I was weak and might not love me as much – or at all.

“I think it was partly because when I was having treatment people would tell me how brave and strong I was. And while that helped me get through everything at the time, in the longer-term, it was actually a hindrance. It made me feel like I couldn’t admit I was having problems or be perceived as weak.”

Katie wasn’t offered any help or support for mental health issues while she was having treatment.

“When you’re having cancer treatment you see lots of people – oncologists, surgeons, anaesthetists. But where are the psychiatrists and psychologists?

“Having those people come and talk to you – and your family – when you’re going through so much would make things a lot easier.

Katie and her family

“I did eventually speak to a professional, but I didn’t tell my parents about it. And I didn’t go for very long.”

Now 26, Katie is doing well and is working as a cancer pathway navigator for respiratory. The main side effect she still experiences is fatigue, but she’s getting better at managing it and knowing her limits.

One of the biggest things she’d like to see change in the treatment of cancer in teenagers and young adults is more awareness and support around mental health problems.

“The cancer community needs to be more open to talking about mental health and social problems young people diagnosed with cancer experience.

“Whenever I try to raise the issue and urge people to talk about it more, the response I usually get is ‘we don’t want to scare people because they’re going through enough already’.”

But Katie firmly believes that talking about the possibility of developing mental health issues during or after cancer treatment would be a positive thing, and would really help people in the long run”.

“We all want to be the strong one who doesn’t have problems. But none of us is. We all have different issues and we all need help getting through them.”

What can we do?

The reality of all cancer treatments is that no matter what they are or what they’re used for, they will cause some side effects.

The good news is that we’re getting better at developing new treatments with fewer side effects, and spotting patients who might have more severe problems with certain treatments so that they can be managed better.

But we still need to get better at raising awareness of the fact that side effects are different in different people, and that not everyone will experience the same ones.

According to Dr Saif Ahmad, a cancer doctor and researcher based at the University of Cambridge and author of an article published this month in the British Medical Journal, which looks at the late side effects teenagers and young adults experience after chemotherapy, we need to ‘talk more and offer more help’.

“We need to raise awareness among everyone – patients, oncologists, GPs and nurses – about the side effects teenagers and young adults who are treated for cancer can develop later in life.

“And we especially need to increase awareness around side effects that aren’t physical.

“We need to speak more openly about things like depression, financial problems and social isolation which people can experience during treatment and when it’s over.”

Another way Ahmad feels we could better support young people affected by cancer is by offering them life-long annual check-ups with their doctor, where they are specifically asked how they’re feeling and if they’re experiencing any problems – physical or otherwise.

“We need to change people’s perceptions around these side effects so patients feel more comfortable raising any issues they’re experiencing, and so doctors are aware they should perhaps act on things sooner in this group of patients.

“It’s about making these conversations normal and routine so that both patients and doctors feel at ease having them.”

Better treatments through research

Thanks to research, more children and young people are surviving cancer than ever before.

But that’s not enough. We want to make sure that not only are more children, teenagers and young adults surviving the disease, but that they’re doing so with a good quality of life.

That’s why through the Cancer Research UK Kids and Teens campaign, we’re raising vital funds to find and develop new and better treatments.

Our research isn’t just about finding new drugs – it’s also about developing kinder treatments for every young person with cancer.

Áine