Ask Questions About Radiation Therapy

[dmt1121]

I had SBRT in 2018 for a bone metastasis on my left femur. It was targeted and mappeds out with a CT/PET scan.

My radiation oncologist told me that he recommended a single higher radiation dose over having several doses at a lower Gray (Gy). Based on his recommendation and my own ignorance on this topic, I agreed. It worked to kill the cancer lesion and my pain almost un noticable.

2 years later, a sprained by left ankle badly running for a light rail to work. I attended to it, expecting to recover from it quickly. Instead, I had series of these sprains occur. I went to a podiatrist who recommended I get a nerve conductivity test because she thought it might be neurological. The test confirmed this I had nerve damage to my peroneal nerve running down the outside of my leg to my foot.

Ultimately, I was diagnosed by a neurologist with "foot drop". This is a progressive loss of motor control of the foot (paralyzation) and my need for a rigid leg/foot brace. The pain in my left lower leg and foot was extreme and unpredictable. It disturbed my sleep and my mobility. I was forced to quit work and to go onto SS Disability, a major loss of income and of a career I enjoyed. However, it was the right choice for me.

Bottom line is that I believe the high dose of radiation, while it was likely on target for the lesion, penetrated the bone and caught the nerve as well. It may have been in the fine print for the release I signed before having the therapy but it was not discussed as potential side effect. After the fact, I was told that this happen sometimes and is not uncommon for some percentage of patients to have nerve damage. Whether it was operator error or a mistake my RO made, it is done and it is permanent. It greatly limits my activities and makes it much harder to exercise.

I recommend that anyone considering radiation therapy to do their homework about benefits and side effects of the proposed treatment before moving ahead. I also recommend pressing the RO about possible side effects and their incidence, as a percentage of patients treated. If you don't get straight answers go to an RO who will provide the answers to your questions.

[Tall_Allen]

Radiation usually has no effect on nerves.

[dmt1121 in reply to Tall_Allen]

Well apparently it can and did in my case. It is not a usual occurrence but patients should be aware of the possibility.

[TJGuy in reply to Tall_Allen]

I was told it was a possibility at MAYO during SBRT. It didn't become an issue for me however.

[dmt1121 in reply to TJGuy]

I am glad they were transparent about the risks. If you know, you can more readily accept a bad outcome.

[j-o-h-n]

REVIEW FOR YOU.

my.clevelandclinic.org/heal...

Good Luck, Good Health and Good Humor.

j-o-h-n

[dmt1121 in reply to j-o-h-n]

Thanks for the article but doesn't cover my situation.

[Mascouche]

I had neuropathy in my hands and mostly my feet that started about six months after my radiation. Thanks to Nalakrats who used to be on this board, it is now under control. For several weeks I took alpha R-lipoic acid, benfothiamine and NAC and the pain went away. Not saying it would also work for you but it did for me.

[fast_eddie in reply to Mascouche]

Yes, I remember Nalakrats, he was a highly valued contributor who basically got chased off this site by a highly abrasive then newcomer. I received extremely valuable advice from Patrick about taking an iodine supplement. Same story with him. Chased off this site by that same know-it-all.

[dmt1121]

Thank you.

[SpencerBoy11]

Sorry to hear what has happened to you. As a widower, I always try to have a friend with me to be another set of eyes and ears. We usual get a flood of info like an ad on TV for some pills. I wanted as high radiation as the RO would allow. It resulted ultimately into Myloidesplastic Syndrome which is rare. I am sure no one mentioned it to me or how to minimize man boobs. Would like to see a checklist for what is available and side-effects to read after receiving the bad news to chew over for a bit before deciding the next step. So difficult for all as a lot of our cancers are unique to us in someway.

[fast_eddie]

Well it wasn't you who did anything wrong. You followed a doctor's recommendation. Sorry to hear about the resulting damage and hardship. Your warning will possibly help others steer clear or at least be informed when they are facing a similar situation.

[dmt1121]

Thanks.