Which doctor should I try to get involved?
I had recurrent breast cancer in 2009. Had my reconstructed breast removed and extensive chest reexcision. Had the other breast removed as we needed tissue to fill in the areas of the chest surgery. A lat flap I had on my reconstruction breast was scraped and moved to my back--a large area of my back tissue had to be removed too-- and covered with a skin graft. I had 36 radiation treatments to my chest and back. About a year ago, I heard a rib snap as I was coiling up the vacuum cleaner. I told the radiation onc, and he just said, "oh." NOthing else. At my primary care check up I mentioned it, and an xray was taken showing a broken rib. My next appointment was with the Onc surgeon who said that nothing could be done for broken ribs but because it was in a radiated area, it would probably not heal. She offered me Neurontin until I could get my primary care doctor to treat the pain. I moved and began looking for a good PC. As the year progressed, the pain increased and I started having extreme pain upon bending over--sometimes felt like something poking my heart , pain in my back when I took my usual walk (had to cut down on my speed and time) and have painful spasms in my rib and back area, in the radiation field.
I just dont' know what doctor to deal with to help me manage the pain and explain to me what is going on. Last last year, my surgeon ordered a bone scan. I waited a month to get the results, but all she said was that there was no indication of mets, but there was indication of radiation damage and the radiologist suggested a follow up bone scan, PET scan, or CT scan and someting else in four months to follow up. So, we did that. But during that time, my surgeon left. The oncologist was suppost to give the results of the second scan, but she didn't even know about the first and sounded unclear about why it was done and did not seem concerned. I understood that this wasn't her area, but was a little upset that she didn't know about the bone scan that must have some significance since I had to repeat after four months. I do have an appointment with the radiologist, but I am afraid he will do what he did last time: just say OH. I will have to push him for information, but since he didn't order the tests, I don't expect much cooperation.
I think maybe I have too many doctors. I wish I had just ONE follow up doctor who knew what to look for for ALL the areas and could explain things to me. I think I am going to gather all my records and see my gp. I know that there is nothing that can be done to prevent damage to bones and tissue in radiated area especially my situation which was unique. I just need someone to tell me outright there IS damage, what it is, and what doctor or service do I see to help me manage the pain and maybe learn new ways of moving so that I avoid pain. (Reaching for something can result in charlie horse like spasm in my side and back.)
Anybody else ever felt there were so many doctors involved that no one was able to help with an overall problem? This is getting me know emotionally as well as physically. I just turned sixty, so maybe I moved to a "it doesn't matter" group? Any suggestions you can give me will be appreciated. I should be able to come up with my own and I might be able to once the pain fog clears. Thanks, Y'all!
Comments
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I understand exactly what you're saying - that's the hardest part for me. I just don't "do" doctors. I've started asking whomoever I"m seeing at the moment whatever pops into my head, not that I get an answer, but still, at least I asked.
I think your idea about speaking with your GP is probably the best...maybe he can sent you to PT, where they can show you which muscles to work out to help take the pressure off your ribs?
Hope you get some answers.
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arbojenn,
Sorry to hear you are going through this. I agree, GP may be a good idea. I am curious...do any of the scans show whether the rib has healed? Many years ago, I had a thoracotomy where they broke the rib to get to where they needed to go. About 2 weeks after surgery I sneezed and re-fractured the rib. It resulted in a nonunion and I eventually had a small piece of rib removed so the bone ends didn't rub together. Pain went away.
I hope you find some answers, and some relief!
Deb
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Thank you! I think I will opt for a GP. My bone scan last week showed rib fractures healing, though they were fractured over a year ago. I understand bones in radiated areas either heal slowly or not at all. My radiologist continues to just say, "oh." My tumor markers were also elevated, but I think this is due to the inflammation from the ribs.
Thanks again for your input--and for listening! That helps so much!
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