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Radiation Plexopathy - Symptoms

wetz5526
Posts: 13
Joined: Apr 2010

For those of you that have been diagnosed with radiation plexopathy (specifically having the pelvic area radiated), I was wondering what type of symptoms you are having. I was officially diagnosed this year - 23 years after having had colorectal cancer and radiation treatment. I've always had some symptoms but it was tolerable up to about 2 years ago. I'm looking for any help or advice on what might help relieve some symptoms, any type of treatments, if anyone has been give a prognosis , and books that anyone might want to share that might help in giving a better understanding of what to expect. Appreciate it.

jazzy1's picture
jazzy1
Posts: 1387
Joined: Mar 2010

I'd love to hear what your side affects were after treatments and how it has changed over the years. I completed radiation, external to pelvic area due to uterine cancer, last July. I've had some lower back pain...chiropractor tells me sacroilliac area he thinks. As had bone density test in Feb/ '09 before treatments and had "minor thinning at top of hip". Doc said to redo the test in 2 yrs.

Neither of my oncologists (radiation or chemo) say this has anything to do with cancer...I'm NED! But then again neither will put me thru a scan to see what it can be. Both tell me to see my PCP, which I don't have now, as he closed his practice.

My symptoms are also tolerable, but hoping it doesn't get worse as I can see where some people end up unable to walk...horrible existence!!

Did any of your oncologists think or say it was due to treatments? I'm finding most just claim no cancer and push us off to other docs....not their deal!! What I'm reading is yes we can claim these treatments do have side affects, which is what we're feeling in our pain.

Jan

wetz5526
Posts: 13
Joined: Apr 2010

Jan - I had colorectal cancer 23 years ago (at the age of 31). I had radiation but not chemo. Shortly after my treatments were completed, I started having severe muscle weakness and nerve issues with my legs to the point of having to use a cane (for about 6 months). They first thought I might have another tumor but after many tests, came to the conclusion that it was a virus that attacked my pelvic area. Over time, I regained about 90% of the strengh back however that's when I started having some twitching in my legs. At that time it wasn't everyday. Over the years it increased but was very tolerable. Over the last 5 years or so it got to be everyday twitching, aching, tightening and buzzing. During this last year it got to the point where is just wasn't as tolerable especially at night. Sitting for too long is really hard too. Nightime is the worst because as I lay there trying to get to sleep my legs won't stop. I was officially diagnosed with lumbar Sacral Myokemia radiation plexopathy this year by a Neurologist after they did a nerve conduction test. They have put me on gabapentin and vicoden but so far it hasn't helped a whole lot. I am told that there is not a lot they can do for it. I do stay active by walking everyday and about 20-30 min of weights and stretching - however, after exercising then my legs get worse but I'm afraid if I don't keep active then I will get to a point where I will need a walker and I sure don't want that.It's so frustrating as it just never goes away - it's always there the constant aching, tightening, twitching and buzzing. I too have had some low back ache but hasn't been too bad - it's more of a feeling of weakness than ache. I'm real careful when gardening, golfing etc. not to over extend the back. Hope this info helps and if you learn anymore or know of any good books to read about this, please let me know. Take Care, Barb

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