When a child is diagnosed, parents cling to the survival rates for their child's cancer type. Understandably, every parent (including myself before my daughter, Grace, died) is desperate that their child will be a 'survivor.'
The survivors are the successes quoted by consultants and charities and give so much hope to those fighting. But what do survival rates really mean?
What does 'survival' mean?
To be a childhood cancer survivor, it simply means that the child is still alive five years after diagnosis. They may be doing well or sadly be severely disabled, or even in palliative or end of life care, but they are still quoted in the success rates.
Steven was diagnosed at the age of 6 with alveolar rhabdomyosarcoma, an aggressive tumour of muscle cells. After grueling treatment of surgery, chemotherapy and radiotherapy, he thankfully reached remission. Steven remained in remission well past the 5 year survival mark, however, just before he reached the age of 15, he was diagnosed with osteosarcoma (a bone tumour) of the jaw overlying the sight of his original tumour. Steven had developed a secondary cancer caused by the very radiation that helped him reach remission initially.
Radiation and chemotherapy treatments, although used to help treat cancer, can themselves cause cancer as well.
After multiple surgeries, tissue grafts and other grueling treatments, Steven has been left with marked scarring, deafness, severe dental problems and very limited mouth opening as well.
Steven is a success story in that he is still in remission and a remarkable young man, but he has been left with a number major health problems that he must face as a result of the treatments he underwent.
Let's have a look figures of children classed as survivors
Please remember that the figures used are the average survival data across all cancer types and ranges; from 99.9% five year survival for retinoblastoma to 0% five year survival for DIPG brain tumours, working out at an 82% average survival.
As you can see from the illustration below, there are a number of children that are alive at 5 years post diagnosis that do not make it to 10 years. In fact, approximately a quarter of children diagnosed with cancer do not survive for 10 years following diagnosis. A further 53% have long term significant health problems as well.
What about thirty years after diagnosis?
Thirty years may sound like a long time, but please bear in mind that these individuals will still only be between 30 and 44 years of age at this time. Effectively, this is when their peers are pursuing careers, getting married and having children. Let us look where childhood cancer survivors can expect to be.
As can be seen from the illustration above, the outcomes of childhood cancer survivors look far from positive. Out of 100 children diagnosed with cancer, 30 years later, we would expect:
- 34 to have died
- 19 to be alive but severely disabled or have life threatening health problems
- 25 to be alive with mild or moderate chronic health problems
Just 22 out of the 100 children diagnosed will be alive and well 30 years on.
A worrying statistic, and so very different to the 82% survival rates that are quoted so freely. This is what we need to remember and why we are fighting for change.
What are the problems that childhood cancer survivors may face in later life?
There can be a vast array of potential problems that may occur, but here are some common ones that childhood cancer survivors may face. They include thyroid and heart problems (heart failure) and bone and growth problems too. The vast majority of survivors suffer from infertility, and they may have graft versus host disease following bone marrow transplants. This can be life threatening.
Some children, like Megan pictured, are left paraplegic from a very young age and are in a wheelchair and facing other physical health problems too. Others may have problems with anxiety, social interactions and mobility restrictions, like Niamh.
Psychological problems such as depression, anxiety and post traumatic stress disorder are very common. This can be a problem in both childhood cancer survivors, but also their parents and care givers as well. As already mentioned, cancer survivors are at increased risk of secondary tumours too.
What can we do to help?
We need to fight to raise awareness of childhood cancer and the fact that the quoted 82% survival rates are not as positive as they first seem.
In turn, continuing to fundraise for research and also to improve awareness of the signs and symptoms of childhood cancer to aid early diagnosis. Early diagnosis saves lives and reduces disability in survivors by allowing cancers to be caught at an earlier and more treatable stage.
Please see the Grace Kelly Ladybird Trust for information on signs and symptoms, to make a donation or to order our awareness cards. We also have a number of other information resources on our website for both parents and clinicians.
Because the children of today all deserve to have a healthy tomorrow.
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