Signs of Late Effects
The first time I faced late effects from my treatment was when I was told I had skin cancer. My scar from surgery was dotted with basal cell carcinomas. Sure, these were cancers that won't kill you, but still, it crushed me.
It started the ball rolling to my realisation that I was facing other late effects. I was struggling with pain in my back from my surgery. To begin with, it hadn’t bothered me too much - I’d always put the pain down to having a 6 level spinal fusion and then carrying 3 kids through pregnancy! Yet as the skin cancers carried on appearing and the pain was increasing, I started to question whether more was going on.
What are late effects?
When late effects turn up months, even years after your treatment for cancer is over it can be a frightening time. Where do you go for help? How do you know it's a 'late effect'? And what even are they?
Late effects of treatment are consequences of cancer that are not present or identified after treatment finishes. They may be physical or psychological and may develop many months or years after treatment finishes.
Late effects can be anything from long-term implications of surgery, psychological issues including PTSD, radiation damage… to name a few. They can appear out of the blue or may have a gradual effect. Regardless of how they turn up, they are a reminder that you had cancer and nobody's got time for that!
When I first became concerned that I was experiencing some long-term side effects from my treatment, my first port of call was my GP. I explained my worries and how I feared that these new issues were linked to the treatment from years earlier, over twenty years earlier in my case.
I was sent on my way and told ‘not to worry’. This was the case every time I brought it up. I felt disheartened, but this was my doctor. This was their job, so I assumed that they must be right and I must be overreacting. I became worried that I was turning into this paranoid cancer survivor and to be honest I felt stupid for bringing it up. Even when I was diagnosed with skin cancers all around the radiation field, I was told by the dermatologist that it wasn't linked to my radiotherapy, but deep down I knew there had to be a link.
A few years later and a house move meant a new GP and a fresh set of ears. This doctor was fantastic and referred me to an oncologist who referred me on to the long term follow up clinic in Leeds.
It took a year for that appointment to appear and I was a hot mess by the time I took the trip to Leeds. I had built it up in my head – this was the most important appointment I would have. The poor nurse who took my weight and height found me sobbing in a corner, overwhelmed by the whole day.
The long-term team looked at all the treatment I received and the issues that are appearing now. Luckily my oncologist had sent me for scans and tests already and through a process of elimination they were able to diagnose me with delayed radiation injury to my spinal cord and nerve roots.
The only treatment available for this kind of nerve damage is medication, however there has been some evidence of Hyperbaric Oxygen Chamber Therapy helping relieve symptoms. I was fortunate to be able to get funding for a 6 week course of HBOT at a local private hospital. Sadly it made no difference for me - to my pain and stiffness. I recently tried a course of acupuncture to see if that could help, but after thirty years it looks like this damage is not going anywhere.
Access for all
But I was very lucky. Not everyone receives these options. From what I can gather, childhood cancer survivors who are still under twenty-five receive great long term follow up. There are clinics scattered around the UK and more and more survivors are finding out about them. However, once you pass the 25 mark, there doesn't seem to be the same opportunities.
I was also thankful to have a 'Living With and Beyond Cancer' team in my area who have been really helpful with support and getting me to see the right people. This included access to the specialist dental service who are sorting out my radiotherapy damaged teeth. My ‘Living With and Beyond’ nurse, Stacey, explained all the services available, offering me a well-being course, benefit advice, and a range of massage treatments at a reduced cost.
To know that, between these two teams, my concerns have been dealt with and I am being listened to makes a huge difference to me. While the range of services varies from area to area, I’d advise everyone to seek out what support is available. I found out about them through my GP and oncologist and, in my opinion, these teams have been invaluable in my ability to get through the last year.
A Bit About Liz:
My name is Liz and I was diagnosed with an ‘aggressive osteoblastoma’ in two vertebrae in my spine on my 14th birthday in 1989. This was treated with a lot of surgery, metalwork in my back to replace the destroyed bone and hold me together, then 6 weeks of radiotherapy to kill off any remaining critters.
I spent two decades in blissful denial about all of the above until late effects started knocking on the door. In the last five years I have had numerous skin cancers removed from the radiation field, these have always been Basal Cell Carcinomas - benign, easy to remove, won't kill you, but still not what you need. In the last 6 months I have developed delayed radiation induced plexopathy which it seems is the effects of 1989 style radiotherapy and I am slowly losing the use of my dominant arm which, again, won't kill me but does turn me into a bitter cow at times! Cancer survival is a long term relationship that none of us want to be in, but we're in it whether we like it or not.
Research into both the physical and psychological late effects of cancer are still in their infancy, with areas like ‘fear of recurrence’ having very little research investment.
But interestingly, there is also a limited body of research that explores potential positive effects of cancer too – things like increased self-esteem, greater appreciation of life, feelings of peace and purposefulness. It would be great to see more of this!
Until then, this is a useful research review, if you’re interested in reading a little background: https://onlinelibrary.wiley.com/doi/full/10.1002/cncr.23448
And bear in mind: some research has suggested that having a history of cancer may actually distract attention away from other health conditions, delaying other diagnoses, so watch out for this too!