Radiation Yes or No?

shamayim said:

I would research it

What do the NCCN guidelines say is protocol?  Then read any studies or trials on the subject you can find to answer your question.  The problem is rare cancer information is hard to come by.....  Radiation is very destructive on delicate tissues so if it isnt necessary I would not do it.   I had anal cancer which is also rare, but not as rare as yours , so you may have to take the lead on this one.  Sorry I cant be of more help....but it sounds like you are being your own advocate.  Dont be afraid to ask her details and what exactly she is basing her decision on.... Sometimes Doctors expect you to take their word for it, but I prefer a reason, statistics, previous cases, and outcomes and their philosophy about treatment.   Often times that is enough because they know more than I ever will on the subject, but I like to also independently come around to the same conclusion as they do so I am good with the decisions.  

I read the article summarizing the research done that the doctor referenced when telling me her recommended course of action.  The study says if two or more lymph nodes are involved then radiation therapy has a positive effect on the outcome.  However, there is no evidence that with one or none nodes involved that radiation improves the outcome.  At my most recent follow up I asked since we didn't take out all of my lymph nodes wasn't it possibel there was still one in there that might be cancerous in which case then we have two or more involved and I should do radiation.  She said that becasue of which lymph node that tested positive she wasn't concerend enough to do any further testing.  She said there are two layers of lymph nodes a first layer and a deeper second layer.  The one that tested positive was in the outer layer.  She said also the lympahtic system in the pelvic region drains linerlay so  if you have lymph node A, B, and C and B is positive then you would expect a or c to be positive and if they were not you wouldn't expect d to be positive......  I guess I was just hoping someone else was faced with the same decision I was faced with and had a postitive outcome to share.  Researching and askign the doctor questions doesn't really settle my mind any or help me with decision making....I am choosing to follow the advice of the doctor at this point in time but still concerned that it might not be the right decision.  The problem is I have no way of seeing into the future to know for sure if it is the right long term decision.....it is the right for now decision.