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Late Effects - Why?

LizRadiotherapy and chemotherapy are two of the biggest tools in the ongoing fight to rid people of cancer (alongside surgery), but both can leave some pretty nasty late effects.

Late effects are the effects from treatment that appear after the treatment has ended.

Not everyone has late effects. The factors that influence them are:

  • the amount of radiation given
  • the placement of radiation therapy
  • how long it’s been since treatment (it could be months, years or even decades)

My late effects were diagnosed 29 years after my treatment finished. In hindsight they had been hanging around and developing for a decade previously… but I didn't know about late effects then.

Radiotherapy Effects

Radiotherapy is amazing, it can shrink a tumour, blast a few rogue remaining cells into oblivion, and give people a future where death was a very real possibility.

However, the problem with radiation is that it carries on working inside your body. It affects the DNA of your cells and can damage healthy cells as well as cancer cells. Radiation can cause the soft tissue to deposit fibrin, form collagen and eventually cause fibrosis (scarring of connective tissue), stiffness, pain, muscle spasms, nerve spasms, and dystonia (when a person's muscles contract uncontrollably). Liz

Today's radiotherapy is more targeted, less aggressive, and less likely to have so many large effects than the treatment I received as a child. But it still happens…

My late effects consist of nerve damage to my upper thoracic and lower cervical spine, the area that was blasted 3 decades ago. I am losing the use of my right arm as the nerves are frazzled in the area that serves my arm. In the last month I have started to get similar symptoms in my left arm and right leg which could be the radiation carrying on its path of destruction.  

Learning to Live Again

Psychologically, late effects are a real head wrecker : I don't feel like a legitimate cancer patient because my treatment was so long ago, yet the late effects are hitting me now, affecting my life dramatically. They feel very current.

I'm learning to live with mine now, trying to go with the flow as my arm becomes stiff and a useless painful appendage. I'm still trying to find the right balance of medication versus quality of life and at times this gets me down.

There is no real treatment for radiation damage, Hyperbaric Oxygen Chamber Therapy can be really beneficial if your treatment was in the last 5-10 years, I tried 20 sessions of this and although it didn't help me I saw it make a big difference to many patients. I watched a lady go from having no saliva to being able to eat again. It can help reverse the damage by forcing oxygen into the damaged cells and beginning the repair. Sadly, my damage was too advanced for it to help.

Again, not everyone will suffer late effects and no one can predict who will and who won't experience them but as I always say, forewarned is forearmed.

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.

Feel free to say hi on Twitter @thesaltiestcow or have a nose at my blog.

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Val Behnke (not verified)

OMG I can't believe I found you. Cervical cancer 1990. 2012 developed a rectal/vaginal fistula unrepairable so i now have a permanent colostomy. 2014 bladder was not working properly so 2016 bladder removed and now have a urostomy. Also diversion colitis, back pain, small peristomal hernia, depression, anxiety etc.... I'm exhausted.