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Almost half of teens and young adults with cancer face ‘crippling’ fatigue long after treatment ends

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Young people who have had cancer can suffer with severe exhaustion for months or even years after their treatment has ended, new research from Cambridge University Hospitals NHS Foundation Trust and Macmillan Cancer Support has found. Many are left unable to study, work or socialise.

The in-depth study of 80 teenagers and young adults in England who have had cancer found:

  • Almost half (46%) suffer with moderate or severe fatigue after the end of treatment, resulting in poor quality of life.
  • Two-thirds (65%) of those with fatigue said it significantly affected their ability to go to school or work.
  • More than half of those affected (56%) said they struggled to socialise with friends and family which could mean missing out on special occasions or taking part in hobbies.

Three of the young people who took part in the study have shared their experiences of cancer-related fatigue, how it impacted on their lives and what they did to overcome it in a series of videos, a preview of which can be viewed here.

Although healthy teenagers often experience tiredness too, due to both physiological and lifestyle factors that reduce the amount they sleep, cancer-related fatigue tends to be more severe and is not eased by rest. For young people, this can be compounded by the fact that their treatment is often longer and more complex than that experienced by older adults.

Macmillan is calling for young people with cancer to be fully informed from the outset of the risk of treatment side effects like fatigue, and to be given the right support to minimise or manage those side-effects. For fatigue, this could include consultations with physiotherapists to provide support and guidance around staying or becoming active.

Dany Bell, Treatment and Recovery Specialist Advisor for Macmillan Cancer Support, said: “Young people who’ve had cancer treatment often struggle just to lift their heads off a pillow. People may think that because teenagers are young they would have the ability to bounce back quickly after cancer but that often isn’t the case – they can face crippling levels of fatigue.

“Teens who’ve been through cancer often feel lifeless, aching from head to toe and lacking in energy. If they miss out on school or spending time with their friends, it could affect their social skills and employment prospects in the long run. That’s why it is so important that young people are given the help and support they need to battle side-effects of cancer right from their diagnosis so they can lead lives which are as normal as possible and will set them on the right path for their futures.”

Anna Spathis, the lead researcher from Cambridge University Hospitals NHS Foundation Trust, said: “This research shows the importance of getting young people early help for their fatigue, supporting them to become active again, and stopping the fatigue turning into a long-term problem.”

Ellis Haggith, 21, from Bedford suffered with fatigue following his diagnosis with Acute Lymphoblastic Leukaemia when he was 16-years-old. The avid Basketball player couldn’t play his beloved sport throughout his treatment, which continued for three and a half years.

Ellis said: “I felt the fatigue from day one and I would just sleep for the majority of the day. I could manage around two hours at school and then I would need to pass out for a nap.

“But, I knew that I needed to keep active so I would go for short walks and I took up golf to keep my competitive streak going. There is a way to lead a normal life and not let the fatigue beat me but it is incredibly difficult.”

If you, or someone you know, is struggling with life after a cancer diagnosis, visit www.macmillan.org.uk or call 0808 808 00 00 for information and advice.

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