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I am in touch with some folks who are just starting this journey. They have asked me for assistance in posting their information and seeking advice. He does not do computers, so the communications are from his wife. Here is what she has to say - Any advice would be greatly appreciated.
The doctor was pretty negative. All of [the biopsy] samples came back with adenocarcinoma. He indicated that it was the aggressive type (?) and all of the samples came back with a large percentage of cancer. I had to ask for the Gleason scores which he indicated as 7 boarder line on 8. The stage he indicated was 2 or 3. He felt that if surgery was done, it would be more of a 3. Although he first indicated last week that the ultra sound looked as if the tumor was confined; however, the biopsy indicated that it was extensive. He spoke about doing the robot surgery; however, he indicated that the bone scans and CT scan may show cancer cells which he would not put him through the surgery if that was the case. I ask what type of treatment other than the robot surgery would be an option if the scans came back with cancer cells and he indicated that the only other thing was radiation which he refused to go into detail on. Is this the type of reaction that you were faced with you your doctor? The earliest date they can do the scan, additional blood work, and CT scan is next Monday. They set a date on his calendar for 12/19 for surgery but stated that they would cancel it if the scan, etc. came back bad. We really feel helpless. I had to ask for a copy of the biopsy, which they did give to me. I brought up the subject/article [on ultra sensitive vs. standard doubling times {Journal of Urology vol 186 issue 6, dec 2011, 2228-32}] that you sent me and he acted as if he was aware of it and the concerns but said it was not something he wanted to discuss at this point.
Pete,
Things to find out:
Age?
Any other health problems?
PSA?
Gleason Score? eg. 4 & 3 or 4 & 4
Are they dealing with a Prostate Cancer Center?
How many operations has the surgeon done?
Very bad "bed-side manner" does not allows mean a very bad surgeon but it does make me suspicious. Also, get copies and keep them of every medical test and always write down questions before meetings with the doctors and make notes of every meeting. Get a filing system as you can get swamped with all the information and appointments.
I think your friend might well benefit from reading through a copy of A Strange Place so that gets a basic view on the entire issue of prostate cancer and some idea of what she and her husband need to do to progress their decision making process in an orderly way - especially by not panicking.
If you cannot download the booklet for her, please give me her postal address and I'll get one in the mail. Delivery is usually ten days to the US.
Frank's questions and advice are good. I'd say it was essential to get hold of a copy of the biopsy report and to get a second opinion Recognised Expert Pathologist as to just what the Gleason Score is. If indeed it is "borderline 8" then it sems likely the score is 7b (3+4) but this neds to be checked - especially if all the samples are an identical score, which would be somewhat unusual.
Unfortunatly too many doctors seem to have the attitude presented by your friend and one of the soultions, if their insurance plan lets them, is to find a doctor they can talk to who will give them good information. There are many of those around too.
Good luck - and keep asking questions - there are no dumb ones. All of us had to ask them because we knew nothing when we were diaagnosed.
