Dec 13, 2012 - 7:57 pm
First post here - a brief recap of my case; was treated for prostatitus for almost a year after going in with minor urinary issues and pelvic pain. Prostate enlarged, but PSA was normal and never went up (so uro continually said "well you don't have cancer"). Eventually after nothing worked on enlarged prostate, biopsy was done-result 9/10 cores positive up to 90%, Gleason 4+3. Switched uro, got 2nd and 3rd opinion and found #1 surgeon in area. Age 49, high recommendation in all my research was to do surgery. MRI with rectal probe showed definite extension outside gland, so no robotic surgery, had to go open surgery. Very, very skilled surgeon with long history - 3hr surgery took 7hrs - cancer had spread up ureter to right kidney, had to reconstruct ureter, implant into bladder, insert stent. Removed lymph nodes. Pathology showed lymph nodes clear, but Gleason was 5+4=9. Very aggressive cancer cells. Due to age, Gleason of 9, spread outside gland, as soon as I recovered from the surgery (a few complications along the way), I went through radiation to the prostate bed (I had now assembled a team of the surgeon, radiation oncologist and medical oncologist). PSA pre-diagnosis was 1.8, post surgery and post radiation is 0.05 (ultra sensitive test). Yesterday I underwent minor surgery to have bladder neck dialated as I was having a very hard (and painful) time emptying bladder. So now I am back with my best friend the catheter, but hopefully when they pull it next week atleast I will be able to urinate with some level of effectiveness and without extreme pain! :-) Main concern right now is that my original pelvic pain is worse now than before diagnosis. I should note that after diagnosis while assessing treatment plans I did have a bone scan, which was clear. Pelvic pain originally was only when sitting on hard surface or on my motorcycle. Now pelvic pain is almost constant when sitting (even in recliner), and even present sometimes when laying down. Not a high scale pain, but definitely painful. My team of doctors don't seem to have a good answer. Oncologist says he had one other case in which cancer spread into the perineal (?) nerves and presented itself with pelvic bone pain that traveled down the legs (like mine). So I am awaiting another MRI of sorts that he hopes will help either diagnose that or eliminate it. I am fully willing to accept that the pelvic pain has nothing to do with the PCa, but my gut tells me otherwise. I have fought this thing head on, with a very positive attitude. But I am getting very frustrated and struggling. I mentioned my age - and unfortunately I have not been one that has been lucky restoring sexual function, very fortunate to get to the point of virtually no leakage, but I have not even come close to an erection (I know there is still time for that to recover, and we have been tackling bigger obstacles so far, but...). Sorry for the long rant - just hoping to find someone with a similar situation. At this point I truly don't care if it is a good future or bad, I just simply need to know what the future is! If you are still reading, thank you... take care and God bless.