I am about 1 year out from my prostatectomy. I've been checking my PSA every month at the same lab and every month it's been < 0.02 ng/ml. Today it was 0.02 ng/ml without the "less than" sign.
The response I've seen before to other patients who have had this kind of result is usually "oh, wait until you get 1 or 2 more results" ... but I can tell, you, where I sit now, only a few minutes from reading the test result, it's hard to calm the nerves.
I don't know that I'm looking for anything other than support right now. Thank you.
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Some patients mistakenly believe the added precision (extra decimals) of uPSA tests means it is more accurate. There is no meaning to a test that doesn't have treatment implications. There is no reason anymore to have uPSA tests. It is a relic of the past.
While it’s true that BCR is defined as 0.2, and that many/most treatment protocols start then, it’s another thing to say that uPSA is inaccurate. What makes you say it’s inaccurate?
Docs around the world will not "spend" time for cases less than 0.1. The honest/forward ones will bluntly tell you: "Come back when you breach 0.1". On the flip side the "carrying" ones will devise a series or silly excuses to get rid of you and at the same time pretend that this is for your own good.
Sadly I concur - the common approach/desire is to position this disease as a chronic illness and treat it with ADT. After RP this disease does not really "recur", it was still there. As I share I had six cancerous pelvic lymph nodes removed by my third treatment, salvage ePLND, at 0.13. All the cancer had to be there before 0.1.
I didn't say it's inaccurate. I wrote: "Some patients mistakenly believe the added precision (extra decimals) of uPSA tests means it is more accurate. "
The accuracy of a measurement i.e the fraction of the total error to the actual value is measurement apparatus specific. It is what it is. The total error, i.e. the difference between actual and indicated values is the sum of a number of partial errors, like random, calibration, operation, etc errors. It is the responsibility of the measuring lab to keep all these errors -exept the random one- within specs so that the reported values are meaningful. For the random one, the only tool in the toolbox for shrinking it is the exact repetition of the measurement N times and averaging results. On the other hand, there is a very simple way to degrade the measured accuracy by merely dropping valid digits. Doing so, one introduces deliberately a "rounding" error. Now, you may ask who is silly enough to throw away the baby with the bath water?, These docs that their SOC cookbook has no pertinent recepy to offer and TA is parroting.
I do not think Tall Allen is saying it is inaccurate results as far as the lab results are concerned but rather there is nothing to be gained as far as actionable evidence. It simply raises the anxiety level for no real reason. As one test is of little value without a trend.
However in the OP said he had surgery to remove the prostrate and consequently an early rise in PSA does possibly reflect biological recurrence much earlier than when radiation is the treatment option.
Then the PSA value of 2 you refer to is the indication of reoccurrence for radiation treatment not surgery. For surgery it is much lower.
The PSA value for recurrance after radition is 2.0 - not 0.2 BIG difference there (having at times been floating around 0.21 +/- 0.03 (currently last read 0.14). I'm sure my radioligest oncologist and medical oncologist would have some concern if that was true. The kept congratulating me on the good numbers (and this all presumes you were done with ADT and at least 6 months or so since the last 3 month shot.)
Nothing to be gained? Perhaps, if one is willing to let cancer grow and spread. My RP nadir was 0.050. I tracked its nine month rise to 0.11 before salvage RT because of nothing to be gained thinking. Salvage RT nadir - 0.075. Again tracked monthly back up to 0.1+. Salvage extended pelvic lymph node surgery with frozen section pathology method confirmed six cancerous pelvic nodes including common iliac and para-aortic.
I goTo MSK and any PSA above 0.05 is considered detectable it's very confusing after 2years mine came back 0.07 my oncologist said it was NOW detectable...What to believe IF YOU HAVE A PSA # ITS FROM SOME PLACE ..
ultrasensitive PSA is a life saver. I had RP four years ago and my prostate cancer escaped the capsule with seminal vascular and 1 lymph node involvement. My 1st 2 standard PSA’s were <0.1. Even with adverse RP results, one approach is to wait until the standard PSA reaches 0.1 before further treatment. I wanted more information for my decision so I switched to uPSA and the next 2 readings were 0.028 & 0.026 all with the same lab. At that point I had a decision to make. The test results could have been wrong (again same lab used), my surgeon could have left some benign prostate tissue behind surgery ( had done more than 10,000 RP), some glands like salvia can produce minute amts of PSA or I still had prostate cancer cells floating around in me. Not wanting to play Russian roulette with cancer. I choose an aggressive approach with 40 rounds of whole pelvic radiation followed by lupron, abiraterone and prednisone. I now have had 14 uPSA’s with all 0.014 except 1 in the middle at 0.006. Did I still have prostate cancer cells in me? No one knows for sure. Am I cured? Only time will tell. Were there adverse side effects? Absolutely, radiation proctitis, radiation cystitis and some incontinence. I can live with these adverse side effects. It may be harder to live with the spread of cancer. In the end after discussions with my medical team, it was my decision to make. Hope my experience helps with your medical team and your treatment decision
Thanks for the support. All of us make decisions on our medical conditions. Some of us may favor a more conservative approach that waits for definitive symptoms to develop which help to indicate a specific course of treatment. Others are more aggressive (me) and risk over treatment/adverse side effects but hopefully stop this disease before it gets worse
Did you wait for a trend, or consider waiting for a trend, in your PSA before electing for salvage radiation? I hear some men stabilize at a low PSA (but perhaps that is wishful thinking).
My 1st two standard PSA’s after RP were <0.1. Switching to uPSA’s produced 0.026. & 0.028. My uPSA results plus my Gleason score of 7 (4+3) meaning slightly aggressive cancer and the fact my cancer had escaped the capsule tipped the scale for me to be more aggressive with my treatment
I'm aware of Tall_Allen's stance on my current situation. He told me that he recommended adjuvant radiation at the time I learned of my adverse pathology.
Is there a way I can both respect his opinion and make a different decision?
After discussions with you medical team, the treatment decision is yours to make. I would ask you medical team, considering cancer was present in one lymph nodes , what is the probability cancer exists in other lymph nodes not removed. The next question is a discussion of potential treatments and potential outcomes. A wait a see approach, some form of ADT, prostate bed radiation, whole pelvic radiation or something else. While nothing is for certain, the best understanding you can have regarding potential side effects and potential outcomes will help with you decision making. Good luck
"Life saver?" How do you know what would have happened had you waited until PSA reached 0.2? Your PSA might have stayed at that level, gone back down, or continued to increase - you have no way of knowing. 3 clinical trials have now proven that there is no risk in waiting. The uPSA caused you to have anxiety that caused you to jump the gun.
uPSA caused me no anxiety as you keep saying. You do not know me. All I wanted was the best facts my medical team & I could get for our decision making. You were the one stating uPSA wasn’t needed in my case because cancer was found in one lymph node likely meant cancer was in others and treatment was needed without waiting. Your bias against uPSA is disappointing given all the help you give others. However you are correct that I have no way of knowing what direction my PSA could have gone without treatment. I choose to be aggressive in my treatment even if it meant over treatment. My cancer had escaped the capsule and my bias was against letting cancer grow in my body until the “medical community” agreed it was a high enough PSA 0.1-0.2 for treatment.
I agree with myself -- if you had a cancerous lymph node, there is no reason for any kind of PSA tests -- adjuvant radiation has better results than waiting for any PSA tests.
I still don't see why a uPSA test is ever useful. Either the patient is better off having adjuvant radiation, like yourself, or there is no risk in waiting for PSA to reach 0.2.
But my standard PSA was <0.1 after my RP. Maybe they got it all. I am not saying uPSA is the only tool but one tool in our tool box we can use to make our treatment decision. It is not a relic of the past. I think you are doing harm to this community by your bias against uPSA. I would want to know if my uPSA goes from 0.020 to 0.030 to 0.040 to 0.060 to 0.070 etc without any other post RPprostate cancer indicators (high Gleason score, escape capsule etc). All of these values are less than <0.1 and something is going on here
So, what you're saying is that your PSA test lulled you into a false sense of security. You should have had adjuvant (immediate) SRT, but instead you waited. I hope you didn't wait too long.
My "bias" against uPSA is caused by 3 randomized clinical trials that told me that, except in cases like yours, there is no harm in waiting for PSA≥0.2. In cases like yours, there is no need for any PSA tests. Before those trials, I believed uPSAs were important. But, as it turned out, I was wrong. Now, uPSAs serve no purpose. Your case convinces me of the harm of them.
My standard PSA results of <0.1 lulled me into a false sense of security. Fortunately, my uPSA results along with my other prostate cancer conditions convinced me that aggressive treatment was needed. You continue to do harm to this community by your bias against uPSA and I will advocate uPSA with own personal experience. I may be a lone voice but the community will have the opportunity to see another point of view
Well said and you are not a lone voice. Until recently Experience was a guideline for posting - an unfortunate change. As I share, nearly six years ago, post RP and salvage RT to prostate bed, at 0.13, I had salvage extended pelvic lymph node surgery using frozen section pathology method. Six cancerous pelvic lymph nodes including common iliac and para-aortic. Latest uPSA from days ago, 0.023. Third PSMA post ePLND, this past July, again NED for prostate cancer. And no ADT.
Thanks for good wishes. Right now I feel I am in a good place as I have had 14 uPSA & basically all have been 0.014 since my radiation treatment or 1/2 of my readings prior to radiation
Keep on with monthly tests. 0.03 is the "something is brewing" early wake-up call. 0.06 is the 50-50% split point for a textbook BCR (two consecutive tests above 0.2) within the next 2 years. The "bright" side of loosing the less than sign is that after 5-6 monthly tests you will be able to derive a no-nonsense PSADT, the only objective and prognostic metric there is. Good luck.
I don't know where you got your numbers from, but in this study, 0.01 is more like the 50/50 split point and 0.03 is their guideline for when most of these patients will relapse. What do you make of this study as compared to your understanding?
It is now 5 years ago when I did my research. Don't have the links today. Only the conclusions, as I presented them. In my personal case they were confirmed. But, if you read carefully it is the first post-op that needs to be equal or grater than 0.03 to signal impending BCR. It took me 8 months post-op for this and 16 months for the 0.06. The same in your case. So, this doesn't apply in our cases.
You may be less interested in this study than me, but reading it, it distinguishes between "first op PSA" and "any PSA":
"When the definition of biochemical relapse was expanded to include any uPSA ≥0.03, all failures missed by analyzing only the first postoperative value were captured (100% sensitivity, Table 4). Notably, lowering the threshold did not overestimate relapse, maintaining a high index of specificity (96%). Adopting any postoperative uPSA ≥0.03 to define relapse is accurate, as 98% of patients were confirmed to eventually progress to cBCR."
Around 2000 a new PSA assay was introduced that gave readings to five (5) decimal places. A study, obviously sponsored by the company, followed were they lowered the BCR pivotal point to the 3rd decimal digit, or something of that sort (don't remember exactly but it was amazingly low). Despite that, it was a market failure. My take on this is that there is no "cure" and eventually all will progress. The important thing is the progression pace. I have read somewhere that if men lived to 150 years, all would have died from PCa. Bottom line, back to basics: Monthly tests, so in 6 months you will have a no-nonsense PSADT. This and only this will shed you some light on the future ahead. Anything else is silly "magic" number hunting.
You are looking for support - I hope this is helpful. What you are doing is certainly not meaningless. I have been testing frequently with ultrasensitive testing since my RP nearly nine years ago. This type of testing calms my nerves and anxieties as I know this beast will not sneak up on me and at a volume of cancer that leaves me no alternative but ADT.
As you acknowledged, several more tests are needed to begin identifying a rising trend. I choose to rely on <0.010 as best indictor. Testing to the thousands provides a clearer picture with minor fluctuations at these very low levels.
After my RP and subsequent salvage RT I waited until 0.1 to take action. I now begin imaging and liquid blood biopsy testing at 0.03.
It is a hard balance… is more information better? I would have said before cancer almost unequivocally yes, but I have since learned there’s more nuance.
I balance being alive and not on ADT with no evidence of actionable disease versus giving this beast time and obscurity. I am now experiencing with metastatic melanoma the risks of all is well thinking when it comes to cancer being defined as 'undetectable' and treated as a chronic illness with life al
The group I'm with only reports a low reading of >0.1. They can test into 3 digits but only report as >0.1 - when I asked why they said that if they were seeing numbers increasing from .02 to .04, they wouldn't do anything anyway so why report it and cause stress. They would wait till it got above 0.1 so they could do a PSMA test to find out what we are up against and treat it accordingly.
I love this as I would live in peace/ignorance and not worry about it until there something that could be done.
PSA trajectory is infinitely more informative than absolute value, which is why most guys with advanced cancer get PSA tests frequently.
At your age, you may be in for many decades with this "hobby". You can look at that as lucky or unlucky, or both. What will work best for you long term may be very different than what might work best if you were diagnosed in your 70s.
I was diagnosed at age 54. While I have been more aggressive than most guys in getting treatments as early as possible, my only regret is not taking action sooner in the early years of my journey.
Knowing what I know now, I would have....
- insisted on getting PSA tests quarterly instead of annually when my PSA went from 1.1 to 2.4 over a year. It might have led to earlier diagnosis and earlier treatment. But I followed the standard at that time to not worry about it until PSA went past 4.
- gotten salvage radiation when my post-prostatectomy PSA reached 0.12 instead of waiting until it hit 0.20. 0.20 is the widely accepted definition of recurrence.
I still have a good chance to live to my 90's with my testosterone, and I think being aggressive with monitoring and treatments has made that more possible than if I had followed advice from others.
Every case is unique. Don't let anyone tell you what you should do or not do. The value of a forum like this is to hear what other patients' personal experience has been with their own cancer, and to get moral support, not to get medical advice.
Thank you for sharing. You had a pretty similar pathology to mine. Interesting to note that you wish you’d gotten treatment before the standard definition of BCR. It seems fairly arbitrary - 1.1 vs 2.0 … who’s to say the outcome would have been different? I will face this decision sometime in my life I’m sure.
I also wish I’d been more aggressive and gotten a biopsy sooner but all my imaging kept coming back negative.
None of us will ever know for sure how much our decisions affect our outcomes. That's why it's a complex decision and everybody has their own opinion(s).
All we can do is educate ourselves, use that to make the best personal decisions for ourselves, and move on with the chips falling where they may. The only time I ever look back is to share my experience with others who may want to know about it or benefit from it in some way.
thats why I do not quite understand the repeated advice to ignore ultra sensitive results. If the series of numbers is noisy then fine. But if it doubles each test, then that is real information. If one was hesitating over the need for treatment, unsure of risks, unsure of lethality, this information that it is on a trajectory becomes useful.
That's one reason I at least try to just stick to describing my own personal experience and avoid providing advice on what others should or shouldn't do. Each guy needs to think for himself based on what he learns and from whom he learns it.
Kaiser is my care provider and SOC at Kaiser for psa tests is 0.1. . After seeing psa levels of 1400-1600 , now all my psa tests show <0.1. . I asked all my oncologists about it and he / she said they aren’t interested in levels lower than 0.1. That when / if my psa climbs up above 2.0 , they will start taking closer looks. That psa can naturally jump around a lot at lower sensitive levels, levels lower than 0.1 just antagonize their advanced prostate cancer patients unnecessarily, and they won’t order them. That’s just how Kaiser does it. No personal thoughts either way.
Incredible - 98% of patients who reached >= 0.03, eventually reached 0.2. Putting it another way, if you treated patients at 0.03 instead of the traditionally defined BCR PSA of 0.2, only 2% of these patients would be potentially considered as over treated.
0.2 dates back to pre 2000 year analyzers having a single decimal point resolution, i.e. 0.1 was their lowest detectable value, a consecutive (2 or better 3 ) 0.2 counts were deemed enough proof of a rising trend building up.
I can well understand your anxiety, but it is true that even if you are invested in taking action at a lower number than .2, your .02 is very low even If accurate. Many men begin a BCR there, but many ‘hit’ .02 and just keep testing near there indefinitely.
I do not and would not test monthly, but that is a personal choice for sure.
I did 18 months of ADT. My PSA was .005. After treatment I did a color doppler scan and 6 months later I did another scan . On both occasions the Dr saw no cancer. It took 20 years to get to 5.9. Im 85 now and 5.9 is ok. You have to see how it moves. That is what is important.
Here in the UK I can access my psa results on two different systems. (The NHS app and Patient Access app, both provided by our wonderful NHS). The NHS app has given me a result of < 0.008 and the other app misses out the “less than”. This is for the same blood sample. When I first saw a result without the little < before it, it freaked me out somewhat as I thought this the beginning rising psa level. The IT people don’t seem to care or appreciate the significance of the little < symbol
So it was basically an IT error , I think
I’ve been on Abiraterone and now taking a “vacation” Previously had RP and radiation
I’ve always gotten a n ultra sensitive test per Snuffy Myers, I’d rather know that something is going on and be able to plan a course. It has almost always been reliable. When I became detectable again, my current MO, Dr. Sartor, advised me to get a PSMA scan once it reached 0.2, when it did it showed a tumor on a rib that I treated with SBRT. This has occurred twice and each time PSA fell back to nearly undetectable. Ultra sensitive tests for me proved to be very meaningful, I’d rather know than not know.
I’m an MD Anderson patient and their stance per the oncologist is that “any value below 0.1 is noise.” After my prostatectomy PSA went straight to 0.2 within 3 months, then at 0.3 I started salvage treatment. At 0.2 a PSMA PET scan showed nothing but due to the RRP pathology report we knew it was there. It’s been 1 year since radiation and ADT ended and <0.1 and testing every 12 weeks. I can’t imagine the anxiety of monthly testing with oscillating values below 0.1.
A few years ago I was in exactly the same place you are now.; made the same “oh crap” post, and got the same answers. Your angst is real, regardless the PSA number, but there are things you can do now:
- calm the “ef” down. First time I went detectable it was 18 months before I started treatment, second time was 9 months, both when PSA went over 0.1. Use this time to learn your options and plan. Discuss with your team, find an RO you trust.
- it can still go down. Plan for the worst, hope for the best
- live your life in the mean time; wake up, chop wood, fetch the water, pursue happiness…
Honestly I feel for you and you've gotten great advice but maybe because I'm addicted2cycling and not just *Cackalacky_cyclist* 😁, things don't worry me until 2.0 +
Since the wood is being chopped, get on a plane to Italy! I'm headed that way next month, This will be our 4th trip out of the country since my Dx 2.5 years ago. Live life!
With this nit picking and splitting these minute numbers . You will not die from cancer : YOU WILL DIE FROM A STROKE OR HEART ATTACK FROM YOUR WORRIES .
Get out and enjoy life , you are doing your overall health no favours .
It took nearly a year for me, after chemo and radiation I finally had the < sign. But nearly 3 years later every time it's drawn I'm still anxious. It comes with the territory.
I'm here to give you support. And I'm sorry you're dealing with the stress, but I tend to be a bit of a stress carrier also
I had prostatectomy 4/2017. PSA remained undetectable for several years. It started to move slightly upward early 2019. And I can tell you, since I didn't have a prostate, I was surprised to see the results. Primary told me nothing to worry about. By end of 2019, it was at .18. 2022, it breached .2. Primary still telling me it was nothing to worry about. Every test I held my breath.
Mid 2023....PSA up to .4. I happened to be seeing an oncologist/hematologist for anemia. She called me at home and said "hey.....I know I'm not your oncologist, but this need to be looked at".
Turned out to be recurrent prostate cancer. Once I found a Dr who wasn't trying to rush me out of there and spent time discussing everything with me, we started 6 months of radiation and Hormone treatment (Orgovyx). It wasn't pleasant, but I am now 8 months past the treatment and last PSA check was "undetectable".
I get that there are other strategies, other treatments, and that some don't find value in the PSA. I can only tell, you that PSA caught my prostate cancer twice. And I can tell you that I held my breath a little after each test.
If I had not seen results from 6 months, I believe my only options going forward would be restarting ADT. But thankfully, the results were what I was hoping for.
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