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Relief from Radiation Fibrosis Syndrome
Head & Neck Cancer | Last Active: 10 hours ago | Replies (62)Comment receiving replies
@mwpcaretaker Semper Fi to your husband from me as well (USMC 1989-93). I’m 3 years out from surgery, chemo and radiation on my left side of my neck. No major complications so far other than mild fibrosis and lymphedema but I’m apprehensive about the years to come reading about others long term struggles. Thank you for sharing his story. It seems to me the same folks that help save our lives don’t have much to say about long term radiation effects. I want to be proactive and do everything I can to minimize them.
Replies to "@mwpcaretaker Semper Fi to your husband from me as well (USMC 1989-93). I’m 3 years out..."
@smittyfromcuse just read your message to my husband (he's from the 'cuse too!).
He said to definitely be proactive with movement therapy and anything to keep ahead of the long term effects, which are different with everybody. He's got an awesome radiation oncologist that he sees every so often still. I asked Doc about all the long term effects, as I didn't know that radiation effects continue long after the treatment. He told me that, back in 2012 when my husband had treatment, doctors did not want to overwhelm a patient with the future effects. It seems now that more information and studies are being done, hopefully, people can benefit from ongoing treatment starting early instead of later.
His area of treatment affected several other structures of the neck, including destruction of small blood vessels He actually has small spots of damage on the cerebellum where blood vessels disintegrated. This causes him to feel dizzy almost all the time.
Being proactive and aware of what possible long term effects you might have is the best way to keep them from affecting you.
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@smittyfromcuse Semper Fi (1975-78) I'm 20 years out and have been quite fortunate compared to many, including my sister. I have found excellent advice here that I was never told about, so things are improving. Hopefully, you will have minimal problems and learn to live with the rest as I have had to do. I just remind myself that I survived a deadly disease and carry the scars to prove it. Good luck!