Has anyone got the cancer back after prostate removal and a follow up PSA of 0?
A member asks about prostate cancer returning (recurrence) after surgery and undetectable PSA.
Hi Yukon2. Unfortunately, recurrence, even after a follow-up undetectable PSA, can occur. One of our contributors, Len Smith, had a recurrence and was treated with radiation. Thankfully he has had an undetectable PSA since. You can read more of his story here: https://prostatecancer.net/community-advocates/len-smith/. Please let us know if we can assist with any additional questions. Best, Richard (ProstateCancer.net Team)
Same here Richard - surgery then 5 years later faced a recurrence and did the radiation and Lupron route - so far all is good
Yes, 2016 had surgery but cancer broke out into the lymp nodes. Went on Lupron injections. After the first injection PSA went to zero. But, PSA started rising until I was put on Ereleda. After 15 months the Ereleda was stopped but I remained on Lupron. In March 2022 they informed me that I was in remission but not cured. So, they have stopped the Lupron after 5 years.
Good to hear you are remission. Was also on Lupron (14 months) after surgery and radiation - for me it was quite difficult to deal with. Can not imagine what 5 years of being on it was like for you - I hope you are ok and adjusting going off that drug
It is rough. Still having all the side effects I had when I was on the Lupron injections. Was told I could have them for up to a year. With my luck it will be longer. After the shots stopped, my testosterone level jumped from 15 to 19.8 in two months. At that rate it will be a long, long time before my levels go back to normal. 
Sorry for the delay in responding, but I’m very concerned that your PSA is positive after a prostatectomy as that can only come from prostate cancer that had metastasized before your prostatectomy. I had a positive PSA 2 years to the month after my prostatectomy (June 2015), and shortly after that I had radiation.
Back then they didn’t know exactly where to radiate, but my radiation oncologist said 99% of the time after a prostatectomy it’s in the prostate bed. And that’s where they radiated. Happy to say, that was my last positive PSA.
But today there’s the Prostate Specific Membrane Antigen (PSMA) scan that shows our oncologists exactly where the cancer is in our bodies so it can be precisely targeted and killed. If you still have a positive PSA, which I’m assuming you do, you need to get a PSMA scan ASAP!!! All the best. Len Smith Moderator PS - I’ve known about the PSMA scan for about 8 years, when it was only available in Europe. If I’d had a second recurrence before it was available here, I was going to be on the next plane to Amsterdam, Holland to have it done! It’s that good. All the best. Len Smith Moderator
Yes the lingering side effects are not fun. The hot flashes etc slowed around month 10 after finishing. What really was difficult was the weigh gain and the emotional (crying for no reason) outbreaks. I found that exercise did help even if it was just getting out and walking. All you can do is keep moving forward and try to envision a positive outcome.
I found being truly focused on the many positive things that surround me really helped crowd out the negative