I haven't posted for a long time on this forum but I read most threads weekly and pass on info to my husband Paul.
Short history: Paul had his prostrate removed in August 2014 by keyhole surgery as the Da Vinci robot hadn't yet become available in South Wales. It was the following year that the Urologist at Morriston Hospital was trained to use it.
On diagnosis Paul's PSA was 5.3 and Gleeson score was 7. On histology he went from 3+4 to 4+3. We were told cancer was contained in the capsule and Paul did have some nerve sparing. Bone scan clear which was wonderful news.
Now, first 2 PSA's were undetectable and the 3rd one was 0.4 which was a real blow, we saw the oncologist at Velindra Hospital Cardiff and he said he would like Paul to wait to go onto a trial where he would have a pet scan and then RT. We were to continue whilst waiting for the trial to have 3 monthly PSA tests. The next PSA came in at 0.3 which even though down one point we were thrilled as it was not rising. We realised at this time that the trial was taking longer to commence but our oncologist said there was no urgency for Paul. Next PSA test 0.4 again and the last one taken 2 weeks ago back down to 0.3. We asked to see the oncologist and saw him last week, now this is where we are really confused and don't know what we should do.
Oncologist said the trial was cancelled so that was the end of that :( he said Paul could just go on active surveillance as his PSA was not rising over 0.4 and hadn't in 18 months or he could start a course of RT. We of course know all the side effects of RT and I feel so sorry for my husband to go through this when his ED and Incontenence is really good, he has worked so hard to get to the level he is right now. On the other hand we know that there are cancer cells on the prostrate bed and they can spread at anytime so is it better for Paul to start RT now when he's fit and well or wait till the PSA rises?
What I find difficult and confusing is different hospitals and oncologists have different opinions as a friend whose husband had his prostrate removed 3 months before Paul and has a PSA of 0.2 has been told by his onco that he will not do anything till the PSA reaches 1 which could take 10 years to do so they told us. The NICE guideline if I'm right (please tell me if I'm wrong) is 0.4 and rising.
Another very confusing thing is I rang the PC advice line and spoke to a lovely nurse and went through all of Paul's history with her. Halfway through our conversation she said ' did you say that Paul's PSA had come down?' I said yes but only by a point then it might go up a point and now it's back down a point. The nurse said she had never heard of the PSA coming down even by a point and then she told me that a very small percentage of men who have benign cells left on the prostrate bed and these will give a PSA reading. I did ask her how could we find out if Paul has these benign cells but she wasn't sure. The oncologist didn't really make much of it coming down a point , this was before we were told of these benign cells. I would really love to ask Lyn all about this for I feel she might be able to throw some light onto this subject.
So here we are.......,, if we go ahead with RT that will commence on the 2nd August or do we continue to leave it and have 3 monthly PSA's tests and see what it does????
We would really appreciate some advice here as we are confused and the time is getting nearer to start the RT. I want the best for my husband and have told him we will work together again just like we did after having the prostectomy, he has to be the one that makes the final decision.
Thank you for reading our journey up to now, any advice would be gratefully received.
Wendy