Anyone else in the same boat?

Hi Jonny, so sorry to hear your PSA hasn't fallen as hoped, I wish I could help but I never had surgery, though I can offer my best wishes regarding your scan results and hope they bring you good news, take care.

Eddie

Hello Jonny five 

I noticed that Eddie has replied but no one else has chipped in so far. It is not uncommon for the cancer to have escaped prior to surgery, particularly with a Gleason 9 (up to 50% of cases) so hopefully the PET scan will be able to pinpoint where it is lurking. This will then direct the type of treatments available but they will take into account your other health issues. I have copied in this information which might help explain things a little. The usual next step would be to have salvage radiotherapy which would be guided by the results of the PET scan, the best type to date being the PSMA PET CT.

Your PSA should fall to a very low or even undetectable level within a couple of months after radical prostatectomy. Because some PSA can remain in the blood for several weeks after surgery, even if all of the prostate cells were removed, doctors often advise waiting at least 6 to 8 weeks after surgery before checking the PSA level.

Some men might worry if their PSA is still detectable even at a very low level after surgery, but this does not always mean cancer is still in the body. Modern PSA blood tests can detect even tiny amounts of PSA, but these amounts might not always be significant, especially if they are not rising over time. It could just mean that you have some cells in the body making PSA, but these aren’t necessarily cancer cells.

Still, having any detectable PSA after surgery can be stressful for men and their loved ones. If your PSA is still detectable after surgery, even at a very low level, talk to your doctor about what it might mean, and what the best course of action might be. Some doctors advise following such low PSA levels over time to get a better idea of what’s going on. Other doctors might recommend further treatment.

If your PSA increases after surgery, your doctor might also want to know how fast it is rising. Some evidence shows that faster-rising PSA levels may be more of a concern. Men who have a shorter PSA doubling time (the time it takes for the PSA level to double) tend to have a worse prognosis (outlook) compared to men with longer PSA doubling times.

Let us know how you get on but it might help us to help you if you update your profile which indicates that you thought you were originally on target for radiotherapy at the start of your journey.

Thank you.

Thank you for the reply,I’m guessing looking at the number of views and very few replies that my situation isn’t that common,I got confirmation that the hospital now have my results and will go to MDT on Thursday followed by an appointment,I will post a update when I have one.Thanks again.

Hi Jonny five .

The last PSA you have recorded on your profile is 5 back in February prior to the intention to go onto the implant. Did you actually have this and are you saying that the surgery has not reduced the PSA at all from this level? The injection/ implant can occasionally fail or may not work for you so it should be either repeated after 3 months or a different one tried - I presume you have had a testosterone test to show that you are at castrate level of less than 1.7, but preferably below 0.7. The injection/ implant should have brought the PSA down within the time since taking Bicalutamide which doesn't necessarily reduce the PSA on its own, although it did show a drop within a relatively short time initially which is a good sign that your cancer is hormone sensitive. Irrespective of that the surgery over 4 months ago should have removed the majority of the cancer and by now there should not be much circulating in the blood to bind on to the antigen. Do you know if the histology report showed clear margins across all areas? 

I hope that you get your results soon and please let us know what is happening.

Hi.so going back to before I was offered surgery I was told this PC was incurable but manageable .in dec was put on bicalutamide with a view to move on to zoladex and then rt.then out of the blue I was contacted by the urology centre for a meeting with a consultant surgeon who then offered me surgery with a curative outlook.before surgery my psa had dropped from 7.2 to 5.8..my psa post surgery remained at 5.8 so was tested again 2weeks later and that came back 6.2 ,so at this point was told I now need a pet scan and I’m currently awaiting results and mdt outcome. My histology results were clear margins around the prostate plus 3 lymph nodes removed and tested with no cancer involved and the urology nurse said to me this is very good news and your prognosis is good.but that’s not the case it seems.

A bit concerning to read such posts about apparently unsuccessful surgery given  that I am awaiting surgery in August . I accept that people need to post their experiences and I have been told that there are no guarantees with any treatment . I also don’t expect many will post with successful outcomes as they wish to put it behind them .

i remain  positive as it’s the only way to be going into this but with fingers crossed . 

Hi Jonny five 

It sounds like you have a hot spot somewhere which can probably be dealt with by radiotherapy and HT. Not what you were hoping for but there is always a plan and the prognosis could still be good.

Hi Magpie29  

I think you are right about people posting about successful surgery, I don’t believe they would need this forum. This seems to be a place of newly diagnosed and what’s happening next and ongoing treatment. My cousin had surgery about seven years ago and he is fine now. He has a  few months  with getting his pelvic floor back and using pads for any leakage, but has now fully moved on apart from blood tests monitoring his PSA. 
L

* add on, I’m just thinking that I’m not sure that he would discuss any ED problems with me though. Did you look into other options as well as surgery? It’s not too late to hold things back for a bit if you are not completely sure.

Thanks for that reply , reassuring. . Yes i looked at the alternatives ( to the nth degree) and made the decision knowing all the implications . Might be tough to take but it’s the one for me . Main concern now is the delay from PSA test 19/4 , bone scan 18/6 and potential op date of August ! Pre op booked for 20/7 but no op date yet , will it have spread ?. Surgeon said I’d be very unlucky if it had !!