My husband, history below, had RRP on 10/31/08. One week post surgery, he had catheter removed and doctor advised he may need additional therapy - IGRT. I said I didn't understand, and he said he thought there might have been something left behind in the fatty tissue surrounding the prostate. I asked for copy of pathology report and received it upon checking out. FYI...doctor was highly recommended and has performed 700+ RRP's, however, he doesn't have much of a beside personality. Full review of pathology report at home says:
"The carcinoma is found from the left mid prostate to the left prostatic base and is all Gleason grade 7/10 with extensive perineural invasion. No tumor is found at the apex. Primary poorly differentiated prostatic acinar adencarcinoma, Gleason grade 3+4=7/10. Confined to left side with multifocal perineural invasion, multifocal capsular invasion, and focai extension to posterior capsule at left base posterior. All other margins completely tumor free. Seminal vesicles are completely tumor free."
"Comment: This is a stage T2A, NX, MX primary moderately differentiated acinar adenocarcinoma, glease grade 3+4=7/10."
My husband had first post-op PSA last week and results were < or = to .1 UNDETECTABLE!
Met with doctor again yesterday, discussed incontinence issues, he advised he is right on target; discussed ED matters and began Cialis and has appointment in January for someone to get pump. Doctor then said we will start the radiation therapy in 3 to 6 months; he doesn't start RT less than 3 months to let bladder fully heal. He was getting up to leave at that point and I said hold on, I have a few questions. He sat down, with a sign and a shrug (visibly and my husband said he saw this too). I said I didn't understand why he was needing radiation therapy at this point, when PSA was undetectable and his pathology report said he was a T2A which I believed to be cancer confined to prostate. His response was "He is a stage T3A and I think there might be cancer left behind and we don't know if the cells are dead or alive". I said, "But the pathology report said he is a stage T2A" and his response was "Pathologists don't know how to stage properly, I have given him a stage T3A dx". I then inquired why in his pre-op biopsy (which was done by another doctor) it said the cancer was found in the apex and mid-prostate and yet the post-op pathology report said there was no cancer in the apex but the base. His response was "The biopsy samples are so small, it picked up a minute cell. There was cancer in the apex but it was a very small. Also, when they do the surgical pathology, they do not look at all of the tissue. Now this is why we don't like patients having these reports because they try to be clinicians and they just don't understand it all." To which I responded, "I am not trying to be a clinician, but my husband and I are trying to understand his illness, so that we can make well-informed decisions and choices about his course of treatment." He then said to set appointments for a 3 month PSA test and one week later to discuss results and radiation.
I should mention that I have shown his pathology report to other doctors that I know outside of our local area, as well as have talked to the pathologist right after the first post-op visit (turns out he is a client of the firm I work for) and they all said my husband's prognosis was excellent, the pathology report was great news and we would be enjoying many Christmases to come together. I asked the pathologist why the doctor would be recommending radiation therapy at this point and he said, he had one small positive margin, which the doctor would probably feel he needs a little "housecleaning" in that area. (I did not tell the doctor I have spoken with the pathologist).
I should mention one more thing, I joined this forum right before my husband was having surgery and while I have not posted often, have read many posts by all and have heard many important comments and opinions. Often I see others say you should have a second pathology report done by one of the experts in the US. At the first post-op visit, I asked the doctor if he felt we should have a second pathology opinion done at John Hopkins or some other expert in the field. His response was "It is not necessary, the pathologist who did this report is excellent and knows what he is doing."
I am so confused, upset, angry, depressed and really don't know what to do next. It seems I am getting conflicting information. Should I go out on my own and get forms and get another pathology report? Should we see another doctor at one of the specialist hospitals in the US? Am I over reacting and just don't understand this all? My husband has aked me to do the research and ask questions because he doesn't like to do that sort of thing and as he puts it, he trusts everyone, and I outside of my family and close friends, make others earn my trust, and with the two of us, we make a good team to find middle ground. Also, I am an accountant/auditor and it is my profession to research, find facts, test. keep professional skepticism and make conclusions based on my findings.
We have already changed doctors once because the doctor he had only did PRP, and then it turned out the doctor scheduled him with some other surgeon in the practice we never even met because he was so busy he couldn't fit him in timely and I was doing research and we came to conclusion RRP could offer better results. My husband is my soul mate and I will go to the ends of the earth and do whatever is needed to help him and be a good partner. So...sorry for lenth of this post, however, I wanted to share all I felt was pertinent info to get opinions and suggestions. Please help, I am so scared.