Rising PSA

[MJPH]

I had a prostatectomy almost 3 years ago. My PSA has been undetectable (<0.01) for all that time. This week it was .02 I’m going to redo the test to make sure. Then my urologist wants to refer me to a radiation oncologist. Has anyone had any experience with this. It’s really been hard trying to sort this all out. Also, if anyone can recommend a urologist or urologic oncologist in the DC area, I’d appreciate it.

[Tall_Allen]

Still very low. There is no advantage to SRT until PSA reaches 0.2.

[richardintexas]

Muy history is similar although the increase began after about 5 years of non-detectable PSA. At 0.13 (14 month doubling) began IMRT targeting the prostate bed. Three month post treatment was non-detectable. Six month test coming up soon.

[MJPH in reply to richardintexas]

Thanks @richardintexas . I’m re-testing my PSA tomorrow. Best of luck on your 6 month test.

[HillPond]

I had a similar experience. Post-prostatectomy at 3 years (December 2022) was .14 with increases to .24 by April 2023. Agreed to ADT with daily Orgovyx and 35 salvage radiation sessions over the summer. Waiting to test PSA next week…

I appreciate the tough decisions. Side effects vary but mine were mostly GI issues and hot flashes caused by ADT. I wish I were near Johns Hopkins. I hear good things about the Urologists there.

[MJPH in reply to HillPond]

Thanks. This has all been quite a shock. Good luck with your PSA test. Hopkins is pretty close. So, I’m definitely thinking of working with them.

[richardintexas in reply to HillPond]

I neglected to mention that, according to my RO, at 0.13 PSA, ADT was not indicated. Avoiding ADT was a significant factor in deciding to proceed with IMRT at that PSA level.

[bean1008]

Mine begin to rise after my surgery and I opted to start ADT rather than radiation. I have been on Lupron and abiraterone for three years now and my PSA has been undetectable within two months after starting them.

[MJPH in reply to bean1008]

Thanks so much. Why did you go with ADT instead of radiation, if you don’t mind me asking?

[bean1008 in reply to MJPH]

Radiation scared me…but I know for many it’s worked out great. It was six years ago that I had to make the decision and today I think there’s been advances in more focused beams (less chance of collateral damage) and shorter courses. I was told at the time it’d be every Mon-Fri for five weeks and they’d have to radiate the entire prostate bed. But some people don’t have a choice…I was glad I did. Best wishes!

[dans_journey]

Hi,

I had a radical prostatectomy in January 2011 and my PSA remained undetectable for 54 months after surgery when it came back at 0.05 ng/mL.

Like you, I went for confirmation PSA tests, but at about 3 month intervals. My PSA bounced around between 0.04 and 0.08 for about 18 months. Because it was so sporadic, we decided to just monitor it during that time. But then it started a very slow upward climb.

I was really reluctant to start salvage radiation therapy (SRT) without knowing where the cancer actually was. Statistically, it would be in the prostate bed and that would be the traditional place to radiate. I was also worried about the short- and long-term side effects of SRT, and was in no hurry to rush into experiencing those.

It took from September 2015 until July 2021—nearly 6 years—before my PSA crossed the 0.2 ng/mL threshold. PSMA PET scans had just been approved for use at UCSF and UCLA, so I managed to get a PSMA PET scan at UCLA in November 2021 when my PSA was 0.22.

The good news was that the scan didn't light up like a Christmas tree; the bad news was that it didn't show the radiation oncologist where to zap.

In January 2022, my PSA was 0.26 in March it was 0.33, and by April it was 0.36. The rate of increase was accelerating.

We started a 6-month course of Eligard / androgen deprivation therapy on 3 May 2022, and began 7 weeks of SRT to the prostate bed only on 7 July 2022.

Coming out of the ADT/SRT combination treatment, my PSA in November 2022 was 0.05 (most likely from the ADT). In March 2023 it was 0.13 and in May 2023, it was 0.11—a hopeful sign that the downward trend indicated SRT was doing its trick.

But in October 2023, my PSA jumped to 0.21 which, of course, was unexpected and shocked me. We did another PSA test 5 weeks later in November, and it jumped again to 0.33. Clearly, the SRT didn't do the trick.

I met with my medical team this week and we're mapping out the next steps.

Would starting the SRT sooner have made a difference? Or would I be in the same boat with the failed SRT just six years earlier? Who knows. I just know that I had 6 years of good quality of life while monitoring my PSA during that time. I made the best decision I could at the time with the information I had available, and that was in line with my own personal desires when it came to treatments and their side effects.

Speaking of side effects...

I was fortunate when it came to the ADT, in that I didn't experience some of the worst side effects. There was some mild fatigue, I found myself to be more emotional, my libido was down and my ED worsened slightly, but there was no weight gain or hot flashes.

The last 3 weeks of the SRT and the 3-4 weeks after SRT ended really kicked my butt. I was very fatigued and my urinary frequency jumped (4-6 times per night) and urgency jumped, too. But about a month after that, things pretty much returned to my post-surgery normal.

There was a three or so week period in January 2023, about 4 months after SRT ended, that I went from 1 bowel movement a day to 3-5 a day. Not sure if that was radiation proctitis but it, too, subsided, thankfully. Now, 16 months after SRT ended, I'm living the same as I was before radiation. I do know, though, that some SRT side effects won't manifest themselves until 3+ years after SRT ended, so the jury is still out.

As a matter of background, my prostate came out cleanly during the surgery: negative margins, no ECE, no SVI, no LNI, nothing. My Gleason was 3+4.

At 0.02 ng/mL, you have time to figure out what's really going on, and I suspect having the PSA tests more than a few weeks apart would give you more valuable information to establish a trend.

Needless to say, I understand what you're feeling right now, and I wish you all the best.

[MJPH in reply to dans_journey]

Thanks so much for sharing your experience. There just seem to be so many variables to consider.

[bean1008]

thanks for your detailed response on this…I think it could be helpful to many. Best wishes on your new treatment plan!