This year, for Childhood Cancer Awareness Month (CCAM), CCLG has been working hard to raise awareness of the long-term impact of childhood cancer and its treatments.
Our recent survey of childhood cancer survivors and their parents/carers’ revealed that survivors of childhood cancer can sometimes live with a range of physical issues such as fatigue, heart failure, nerve damage, hearing loss, slow growth in height and bones, and infertility. These long-term side effects, known as ‘late effects’, need lifelong follow-up care and management.
Our survey also found that nearly three out of five (57%) survivors reported an effect on emotional health and wellbeing, with patients describing a range of mental health issues, including depression, trauma-related conditions such as PTSD and self-esteem issues. The fear of cancer returning, or of managing health conditions as a result of treatment, meant that health anxiety was prevalent, with 77% of survivors worried about future health needs and 65% felt scared about what might happen.
Parents are also hugely affected and are left feeling worried that their child’s cancer will come back (95%), scared of not knowing what might happen to their child in the future (87%), feeling anxious around scans and follow-up (86%), and feeling abandoned and lost after treatment.
Ellen, 27, diagnosed with acute promyelocytic leukaemia (APML) in 2005, when she was nine years old, before relapsing aged 12.
My life is very different to others, and I think that’s difficult to navigate as a young person. When treatment finishes, life doesn’t just go back to what it was before and, often, neither do you. So, it’s important that you just give yourself time to adjust. Enjoy life and take the time to process everything that you’ve been through. It’s important to be kind to yourself, even if it’s sometimes frustrating that you can’t do what others can.
I’m so grateful to be alive and I really do find joy in every single day. That’s one great thing that cancer has given me - a deep love for the world and being alive, and an appreciation and enjoyment of the little things in life. I don’t want my story to worry people – while I’ve been left with a lot of late effects, they don’t impact everyone in the same way or to the same extent. I’m extremely hopeful that with the newer treatments that are available now and that continue to be modified and found, late effects won’t be so impactful for childhood survivors in the future.
We also need research looking at support for people with late effects, and that’s why the work of charities like CCLG, who fund research across the whole cancer journey, is so important. The more research we have, both into new treatments and how to support survivors, the better for future generations.
Kimberley, 25, was diagnosed with rhabdomyosarcoma, when 13 months old in 1999.
I think that once you’re done with treatment or that little bit of recovery that comes after, people often think you’re okay. They don’t quite understand these conditions that you’re living with, how they’re linked to cancer, how they impact you at different times and how they will continue to impact you and how that’s not going to change.
Without the first-hand input and feedback from what we’ve experienced, it’s going to be hard to improve services and support for patients. It’s an important discussion to be had and I feel it does need to be understood more, particularly as it’s such a broad and complex thing.
Ashley Ball-Gamble, CEO CCLG
As the professional network for those involved in the treatment and care of children with cancer, we are in a unique position to feed back our findings to our members. These invaluable insights will help us influence positive change through our network of national experts, who are working hard to understand the full extent of childhood cancer’s impact, which will, in turn, help implement improvements in care and resources.
There’s lots more to do to develop appropriate support for survivors, but we’re working hard to make it happen.
HOW CCLG IS SUPPORTING CHILDHOOD CANCER SURVIVORS:
CCLG has a range of information resources for survivors featuring expert written information on:
- long-term side effects
- how to stay healthy throughout life
Download our free ’Living Beyond Cancer’ factsheets
From Contact magazine issue 100 - Autumn 2023
