We all have our personal preferences and stories but we must remember “what is right for one person may not be the best treatment for another.” Don’t rely totally on others information and interpretations of data. Do your own research to ensure that you obtain the best medical care possible. Remember that each case is different and per my ortho oncologist “ There isn’t any one type of treatment or surgical approach that stands out as the correct way to treat pvns.” However, they are seeing patients joints being destroyed not only due to the pvns but the damage caused by repeated surgeries. My personal opinion is that if you choose to do Rt you will gain more benefits if you have it done prior to severe damage from the pvns and multiple surgeries.
Even after the best surgeon has performed a synovectomy on diffuse pvns...there are still microscopic pvns cells that remain. It only takes one of these cells to seed the tumor and get it growing again. RT is used to sterilize the microscopic pvns cells so they are unable to reproduce. Every procedure has risks and the difficult part is determining what risks that you are willing to take. When your doctor suggest a a treatment plan ask him why he believes this particular treatment will be best for you. Everyones personal and physical condition differs so please take the time to do your research to find the best options for your situation.
With all of that said I chose external radiation vs internal radiation because they are able to direct the external radiation exactly (and I mean exactly) where they want it vs the more generalized radiation of the entire joint. Another point to remember is that each body part has a life time limit of radiation that it can be exposed to. I didn’t take this into account when I decided to have RT treatment. It decreased my chances of recurrence to 20% but it seems that may not have been good enough. The mri suggests findings that are consistent with pvns at the 6 mo f/u mri so it may have recurred. (found out 6 mo later that it did not recur but it was scar tissue sowing on the mri) I see the surgeon on Thursday to discus our plan of action since it also now appears to be on the tendons. RT does work but again it only takes one stupid microscopic cell to start it all over again.
I am not a physician and the above is in no way to be taken as medical advise. This is my interpretation of what I have been told by my physicians and from what I have read. Always consult with a professional for case specific accurate information.
More good info from you, thanks. I am heart broken to hear that it is back for you. My doc had said that, for me, if it came back after rt, I would have to take chemo, for the rest of my life. Best of health.
ReplyDeleteThank you for your reply Karalee, For now my surgeon is going to watch it and order another mri in 3 months because my knee isn't bad enough or ready for any more surgery at the moment. I spoke with her and she isn't convinced that it is pvns on the tendons but in the other areas that the mri showed hypointensity it most likely is but it's in a place that would require them to open up the back of my knee and she doesn't want to do that unless it starts damaging my knee. She would rather watch it real close. As far as chemo due to some other health issues that isn't even an option for me. As far as I'm concerned chemo poisons the entire body to treat a joint which is a whole other ball park. It must be considered very carefully because like with radiation you can't reverse the damage done by it.
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