It may sound silly to say excited but when you are diagnosed with a condition, that is very rare, you have no one to talk to or compare notes with. I find it interesting to read about the lack of confidence in their doctors and the need to build awareness of these late stage side efects if cancer treatment. I also have to ask the question. Why can patients find each other on the internet but not doctors who have made similar diagnosis??? Is Lumbar plexopathy so rare that doctors have no interest in educating each other or finding out what may help. I am quite sure that we will, overtime, see more of these side effects of cancer treatments, as people survive their origional cancer diagnosis. The medical profession are focused on curing the cancer, then once this is completed the patients are left to manage the effects if treatment alone, often searching for answers to strange and unusual symptoms. For me this meant a merry-go-round of specialists and tests while my symptoms became worse and worse.
I have been lucky in that my origional Radiation Oncologist has taken me back under his wing. I hope that in doing this he will learn for future patients and be more aware of the early symptoms. He has already seen cases of Brachial Plexopathy, they have changed the way they do the radiation, which has lessened the number of patients presenting with this problem. Lets hope they find a way of helping those with pelvic radiation to not have Lumbar Plexopathy years later.
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