I've been getting ultra sensitive PSA tests every three months. These are the last three scores:
0.015
0.017
0.026
(First PSA test after surgery was <0.1)
I am worried. Frightened, actually. Margins were not clear on my surgical biopsy, though gleason was only 3+3. Two biopsies prior to surgery showed gleason at 3+4. PSA had jumped to 5.x prior to surgery, after hovering at 3.x for about 2 years. Decipher test prior to surgery was 0.63, which is just inside the High risk range.
Do I get additional treatment now? Or would I be jumping the gun? Meeting with my urologist/surgeon this week. Thanks.
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SmasherOfAjumma
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No, you shall calm down and enjoy the New Year. Speaking from personal experience your road map is:
a) Up to 0.03 even thinking about it and you are committing a major offense against yourself.
b) From 0.03 to 0.06 you are allowed to be uneasy, but that's it, nothing more.
c) From 0.06 to 0.10 you comprehend that your chances of becoming recurrent are 50/50%, so you start planing your next treatment. Planing I wrote, not kicking-off any treatment, read carefully. Any doc that will recommended "early" sRT should be banned for life.
d) From 0.10 to 0.20 you are traversing the "bumpy" range, i.e. PSA can go faster up nose dive down or go sideways. It is for people who like riding roller coasters in amusement parks.
e) Thrice confirmed above 0.20 the fun part is over and pre-planed actions are to be implemented asap.
Happy New Year. Your situation was similar to mine. I had RALP with margins not clear & Gleason of 4+3=7 ( more aggressive than yours). I had 2 ultra sensitive PSA’s towards a year after surgery. They were .026 & .028. After consultation with my Dr’s, I elected an aggressive approach & had 40 rounds of whole pelvic radiation. I have had 12 ultra sensitive PSA’s since & all have been .014. Were there still PC cells floating around in me after surgery? No one knows for sure & SE’s not good (incontinence, radiation proctitis & radiation cystitis). However ultimately each of us after consultation with our Dr’s need to make a decision on our treatment. I choose to be more aggressive with my treatment. Hope this helps
I think the key is early salvage therapy (as you did) combined with state-of-the-art radiotherapy to minimize side effects. You were definitely aggressive initiating with that low of PSA and going whole pelvic. Whether to go whole pelvic or is a tough decision. But if we all had a crystal ball, if the decision was more/worse RT side effects versus long-term survival the choice seem pretty obvious.
There's mounting evidence SBRT (5 doses typically) to the prostate bed is non-inferior to tradional 33-40 dose RT methods and with less side effects (for those yet to have salvage RT see POPART study results that just came out November 2023 out of the University of Milan ctro.science/article/S2405-.... I'm not sure if SBRT is feasible for whole-pelvic though.
I think the younger you are the more early and aggressive you should be as you can tolerate the side effect better when you're younger and it's no fun having to be on ADT for years in your late 50's early 60's with fingers crossed a new therapy will save your life later.
But I've gone off on a tangent (as usual). Everyone's accounts of their experience though in this forum as so important no matter what stage you are at. So thank you for posting about your experience.
Thanks for the reply. Like all of us, one of the worse words you can hear is “ you have cancer”. I was 72 at the time and after all the diagnosis tests, I choose RALP. The bad news was my cancer had escaped my prostate ( seminal vascular involvement & 1 positive lymph node). The good news was I knew from the best guess from my medical team, the level of my cancer condition. After healing up from surgery, my 1st PSA was the standard type resulting in <0.1. Know my margins were not clear, I switched to Ultra sensitive PSA with results of 0.026 & 0.028. At that point I had a decision to make, the ultra sensitive PSA could be wrong ( same labs always used), my surgeon could have left some benign prostate tissue behind (surgeon had done more than 10,000 RALPs), other glands like saliva can produce minute PSA readings or I still had prostate cancer floating around in me. Not wanting to play Russian roulette with cancer, I choose whole pelvic radiation & the stampede trail. Unfortunately, even though all my subsequent ultra sensitive PSA test have been 0.014, when asking my medical team how effective has my treatment been, the answer is we don’t know until we stop. So in six months I will be at that point & will hope for the best
Unlike some other replies here, I am a fan of ultra-sensitive PSA tests - but I have aggressive cancer and need to know what's going on with continuing mutations of my cancer. If it was me, I would continue to monitor and discuss with my medical team. Some might suggest EBRT sooner to "mop up" what might have been missed with the surgery. The question I would ask is, "how do I know that will get it? Should I wait until PSA is >0.75 and get a PSMA PET scan, or do some RT earlier and see if that knocks it out. I would certainly talk with a variety of docs before making any decisions. Eugene Kwon at Mayo is an advocate of more aggressive treatment and might help you come up with a monitoring and testing regiment that could result in a more tailored treatment plan. While you have some time, as others have said, I like to feel like I am being responsible and doing what I can to make the best informed medical decisions.
It has now been 5-years and four months since my Ralp. My PSA has wandered all over the place. My pre-surgery PSA was >10 in two tests over three months. My post-surgery pathology showed 3+4 and some minor not-clear margins.
At the five-year mark my oncologist (retired prostate surgeon) told me that almost nothing interesting happens after five years and put me on a one year testing cycle.
During the one-year to four-year time frame he kept reassuring me that post-RALPH PSA can go up-down-remain the same and he would not be concerned until he saw PSA > 0.10 in two tests six-months apart. He also said that if the upward trend is slow - he would do nothing till 0.20 is detected over two tests in six-months.
And, then he said if I was over 78-years old (now am 76) he would probably do nothing.
Here is my PSA after RALP at X-months:
2 - 0.021
4- 0.018
7-0.022
9-0.028
13-0.035
16-0.050
19-0.048
22-0.060
25-0.069
29-0.052
32-0.045
38-0.049
43-0.079
49-0.091
56-0.082
Plugging all that into the Hopkins doubling time formula gives me a 52 month score from the nadir at 4-months.
And... my Decipher score was 0.41 which is just above low risk of metastasis in 5-years.
Patience - I to was very nervous about the ultra-sensitive PSA for the first three years - now I hardly think about it.
It's interesting to note that if your test didn't go to 3 decimals or below 0.02 like a lot of healthcare centers do these days. Assuming they don't round up or down and just cut off the 3rd digit, your results would be 0.02, < 0.02, 0.02, 0.02, 0.03, 0.05, 0.04, 0.06, 0.06, 0.05, 0.04, 0.06, 0.06, 0.05, 0.04, 0.04, 0.07, 0.09, 0.08. You make a good point that age is a crucial deciding factor along with pathology and PSA results. With such a long doubling time, I doubt you'll get any extra longevity in life by doing any treatments based on average lifespan. You could end up just living your final years having hot flashes from ADT and then die from something completely unrelated to PCa. A very interesting result pattern indeed.
It's also interesting to note, if you even just took your last 31 months of results (last 6 readings) your doubling time is still over 3 years (39 months). That's still VERY long so it's not really accelerating significantly.
At 55, if I had the same result, I would have been scheduling salvage RT to the prostate+pelvic bed probably at the first 0.05 reading maybe the 0.06 if I saw it come down to 0.04 after. If I were your age I might do nothing until 0.3 and get a PSMA-PET to look for targets and just fend off significant mets. But I think most Oncologists would put you on ADT first to slow it all down. Sorry, starting to ramble.
Sorry this is long but it's something also weighing heavily on my mind right now...
Like the others basically indicated, there's nothing to worry about based on those numbers but that is much easier recommended than done. I am a classical example of too much information too soon beginning almost 2 years ago at first diagnosis. Seattle Cancer Care Alliance (Fred Hutchison/University of Washington) opts to not report (at least on the report the patient sees) PSA to more than 2 decimals. And that is a wise choice in my opinion. The reason is, depending on the specific test the margin of error maybe be in the .004-.008 range typically. And there's nothing actionable below 0.03 anyway.
So what it does for many is they get to see their uPSA bounce around over the next, 1-X years as OldTiredSailor has demonstrated. In the first year or two, see your score go up can be quite unnerving - I'm mean let's face it, up is the "wrong" direction and we are only human, not robots.
There are numerous studies on the prediction power of uPSA results regarding biochemical recurrence. From .001 on up. Now that many years have past more recent studies are zeroing in on what is "reliable." For one example, from a chohort of 2,868 men with undetectable PSA after surgery"
"Retrospective analysis of men who underwent RP for clinically localized prostate cancer at the University of California, San Francisco from 2000 to 2022. The primary outcome was biochemical recurrence, defined as 2 consecutive PSA > = 0.03 ng/mL starting 6 months after surgery. "
I had < 0.02 my first 6 tests from 6 weeks post-op then every 3 months and just got back 0.02 without the < sign last week so to be honest I'm as scared as hell but then you have to say, is there really anything I can do now to change the course of things. The worrying is counterproductive. Exercise and good diet and low-stress are the opposite.
But boy, when you're at this early post-op stage and haven't "crossed the threshold" to BCR - waiting for each lab result is super stressful.
I can't speak from a survey of Oncologists but I would not be surprised if the current trend is treating sooner than later once you have two reading 0.03 or more. This means probably getting salvage RT in the 0.05 to 0.1 range. One Urology conference last year they were advocating before 0.25 but many are choosing in the 0.05-0.2 range to initiate secondary therapy from reports I heard from a few other patients.
I think it's best to try not to worry but also be prepared to act if the numbers dictate it. In general the earlier you treat the higher chance the secondary treatment can be curative. Many Urologists have been, in my opinion, making the mistake to wait until you are 0.3 and then looks for targets on a PSMA-PET scan (lower PSA and the PSMA PET scan is pointless.) This is no longer considered best practice to wait for things to show up on imaging as you've given too much time for the micrometastases to grow and spread out further possibly outside the radiation field. But we must try to not get too far ahead of our tests - easier said than done.
I had a prostatectomy and 54 months later, my PSA came in at 0.05 ng/mL. I went into full panic mode.
My PSA bounced up and down between 0.04 and 0.08 for the next 18 months, so we opted to just monitor it. But then it started a steady but slow upward climb. It took 6 years for it to get to 0.20.
At that point, I paid out of pocket for a PSMA PET scan to see if we could located the cancer 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 provide any useful information to the radiation oncologist.
I really wanted the RO to know that he would be zapping in the right location, and one of the reasons for the delay was my hope that the PSA would get high enough for the PSMA PET scan to be able to determine the location. I mean, why zap the prostate bed and risk damage to the surrounding area if the cancer has already moved elsewhere?
Six months later, just before starting salvage radiation therapy (SRT) to the prostate bed only, my PSA increases had accelerated and it was at 0.36.
The SRT knocked my PSA down to 0.13 and then two months later to 0.11. It was good to see a downward trend. My next PSA test six months later nearly doubled to 0.21. That was disconcerting, so we retested five weeks later, and it was up to 0.33. That was in November 2023.
We're in the process of trying to figure out the next steps. I go for a bone scan next week and, while it likely won't show anything at my PSA level, it's part of the protocol where I'm getting my treatment. If it's negative, I should be able to get another PSMA PET scan, this time paid for by my insurance.
BTW, my initial diagnosis was Gleason 3+3 that was upgraded to 3+4 after surgery. My prostate came out cleanly—negative margins, no ECE, LNI, SVI, nothing.
Obviously, it appears that the SRT failed, so that raises the question: Should I have started SRT sooner? I don't know. Maybe. Maybe not. I do know that I had 6 years of a decent quality of life while waiting for my PSA to hit the traditional definition of biochemical recurrence at 0.20.
I was worried about suffering side effects from SRT, so that was another factor that went into the delay. That worry may have been unnecessary.
The SRT has been completed 18 months now, and fortunately, the side effects have been minimal. My stress incontinence has grown slightly and my ED has worsened slightly. Fortunately, no bowel control issues (but I understand those can pop up years down the road).
In your case, keep PSA testing and try to determine the PSA doubling time to see how rapidly it's growing. The PSA doubling time calculator on the MSKCC website needs PSA values of 0.1 or above to do the calculations.
For me, it was important to preserve my quality of life for as long as I could while not letting the cancer get away from me. It was a crap shoot that I was willing to take. You may have other priorities or desires.
Wow, Dan, thank you for sharing all this with me. You've really given me a valuable perspective. I hope it works out well for you and you are able to stay healthy.
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