Hi everyone. It's been a few weeks since I've posted. My husband is busy with his excercises and is getting more control every day. He is now 3 weeks post cath removal and is down to 3 pads a day. The most leaking is when he is up moving around so he's a little worried about going back to work next week as he's pretty much on his feet all day. Anyways last Thursday the doctor called with the results and it wasn't what we wanted to hear. Instead of a Gleason of 6 it was a 7 so much more aggresive then they thought which is what we based our decision to wait the 7 months for robotic surgery on. Then they said it was a T1 and it ended up being a T3 and had spread outside the prostate! Damn. We are very upset. The doctor is pretty sure he took enough tissue from around the prostate and is pretty sure he got it all but..... So he goes back March 1 and we'll get the first psa results which he'll do late February. So we are back into the waiting mode yet again which as I've read comes with PC for sure. He says that after the psa test we will talk about what comes next and whether he'll need radiation. I guess he could be okay for the first test and then over the next 5 years we'll just keep waiting for each and every psa test. Anyone out there with the same numbers? His psa in January was 5.7, then May was 6.1 then October was 6.89. What do you think the chances are that it will come back with these number? I'm so mad that it had gotten outside the prostate.
Upgrade in the Gleason score post-surgery is very common. Indeed, one of the advantages of surgery is being able to get a more accurate read on the cancer, from a path report. Do you know whether the 7 was a 3+4 or a 4+3? The difference is more significant than you might expect. What did the path report say about spread beyond prostate? Just "positive margins" or did it say something more than that? One somewhat complicated decision in these situations is how quickly to move forward with radiation. Unfortunately, there is no uniform view in the medical community on these issues. There is some evidence that starting radiation sooner yields better results. But, of course, radiation is not free of side effects, so nobody wants it if it is not necessary. I suggest that you address this issue not only with your urologist, but also with a reputable radiation oncologist. In doing so, you need to keep in mind that radiation oncologists make money by doing radiation, so there could be a bias. But it is still worth a consultation, in my view.
My situation was somewhat similar. Dx in Oct 2002 with a PSA of 4.7 and Gleason 3+4,T1c.... did radical surgery...boy was I surprised at the path report...gleason upgraded to 4+4, microscopic spread into the seminal vesicles and 1 lymph node..stage T3N1M0 !!!
My Psa stayed undectatable for about 18 months then started rising....did 35 IMRT treatments along with 3 months of hormones...PSA went undectatable for another 18 months. I have watched it climb to 4.65 and then started full hormone blockade in June of 2009....PSA is now down to 0.06. It took 5 years from the finish of radiation till it reached 4.65. My case is challenging but I'm now out 7 years......I hope the hormones will buy another 6-10 years, then there are other potential treatments in the pipeline...point being, even with bad stats there is a good chance I can treat my cancer as a chronic disease and live out a normal life.... the worst part of all this is to control your mind and the fear that is there and enjoy life.So even if the worse does happen for you,try not to worry, there is so much that is being done these days. My quality of life has been very good except when my mind gets in the way.