Hi all. First post on this board. Seems like I can learn a lot. Stressing out over my psa results this week. Highest since RP 8 years ago. Has been as follows:
2015…<.03
2016.. 0.020
2017…0.021
2018…0.028
2019…0.024
2020…0.029
2021…0.029
2022…0.03
2023…0.05
so my concern is the almost double this year. When I went from 0.024 to 0.028 my doc had me ready for salvage radiation. Then it came down to 0.024 and he said hold off. Now at 0.05 I know he will want me to get radiation.
I am afraid of side effects radiation might cause, especially causing other possible cancers. Or them totally missing the bad cells and the psa continues to rise. I was told that at this level, it will not show up on a psma scan.
Any advice is appreciated. I should note that in 2022 the lab was changed from LabCorp to Sonora Quest. Not sure if that matters. But either way it’s a jump from 0.03 to 0.05 using Sonora for both.
I am planning to go to LabCorp and pay out of pocket in 2 weeks for a retest.
Anyone know what else could skew a psa test after prostate has been removed.
Thanks everyone!
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I was diagnosed at age 53. Psa 4.0 before surgery. Biopsy found 9 of 12 Samples positive. All Gleason 6. All between 5 and 15%. Most 5%. Had RP In 2015. Testing showed Low Risk of recurrence. PSA first 4 quarterly visits was <0.03. Then switched to ultra sensitive and results were 2016.. 0.020, 2017…0.021, 2018…0.028, 2019…0.024, 2020…0.029, 2021…0.029, 2022…0.03, and now 2023…0.05
No other health conditions. 61 yrs old now. Work everyday, feel fine, other than stressing myself over this stuff!
You are doing a very gross mistake (in terms of measurements science) of mixing two different sequences of two and three decimal places values. That is because the former has a ten-fold more rounding error compared to the latter. You have two options: 1) Back to the 3 decimal places lab. 2) Stick to the 2 decimal places lab but wait for another 8 draws in order to compensate for the missing decimal through over-sampling. Hint: I am a retired engineer not a silly doc that will want you get irradiated with these numbers.
I'm really glad you are on here with your knowledge. I personally would not trust this doctor. My Nephrologist tells me there is an error factor with lab readings plus after I had radiation , I was told I had to use a special lab to get accurate readings because labs like LabCorp and Quest don't get down that low. Also, isn't there other parts of the body that produce small amounts of PSA?
Since 3 randomized trial have proved that most men can safely wait until PSA reaches 0.1 or 0.2, there is no longer any need for ultrasensitive PSA tests. They only cause needless anxiety.
Just for…..when I saw he switched labs I was not too keen on it either. He did it more for me as my new insurance did not cover the first one. But I am going to go back to it and just pay out of pocket.
Talk-Allen…thank you for your comments too. I didn't know that about the double time of very low numbers. I tried to read that link but half way through my brain explodes trying to understand it! 😀.
Again thanks to everyone for caring and sharing advice. It helps a lot. Dr. Google does nothing but scare me! You guys have calmed me down.
Twenty to thirty years back when the precision of the PSA analyzers was to the first decimal place there was indeed no PSADT bellow 0.1. Time has passed and the precision of the analyzers improved to the second and third decimal places. Lay people are under the impression that 0.1 and 0.100 are one and the same thing. It may be so when one writes a check, but definitely NOT to someone that has practiced measurements.
Hi...can you explain what you mean about 0.1 and 0.100 not being the same. Or even better, using my numbers of 0.029 two years ago at first lab, then 0.03 last year at new lab to 0.05 this year. Last year I just assumed that my PSA was still about 0.029, but the new lab rounded to 0.03
0.1 can be any 3 decimal value from 0.050 to 0.149, that is apart from 0.100 another 99 different values. Equally, the spread from 0.03 to 0.05 nominally 0.02 -in two decimal places notation- can be 0.020 but also any other value between the max spread (0.054-0.025) and the min one (0.045-0.034). Take your pick.
what was the size of your gland on the path report from surgery. And what was the final path report. GS, etc. You only listed biopsy report. Surgical path report is more comprehensive annd important.
Oh, sure. The Gleason 6 was confirmed. Also the testing they did said LOW risk.
My prostate was very enlarged. This is the main reason he removed it rather than treat it with seeds. He said since it was so large at my age (53 at that time) that if they did the radiation, by the time I was 60 it would be so big that I would have major issues and then he could not remove it.
Hopefully he won't strongly advise SRT at a Gleason 6 pathology and such low PSA> if he does, ask what science supports such advice ? I'd be surprised if an experienced prostate radiation oncologist would concur with him.
Do the NCCN guidelines have suggestions for your post-RP situation re PSA numbers? That is generally a good first place to look.
I don't have an answer about the guidelines. I will have to find out more about that.
The radiation is done by the same office. So they probably would agree. Also, a few years back when my psa went from 0.022 to 0.028 he suggested radiation. At that time my insurance did not cover his office. So he sent me to a radiologist that I was covered under at a different unrelated center. That radiologist also seemed to have no problems with the idea of treating me at even lower numbers than now! Fortunately, my psa then went back down to 0.024 so my doc said to hold off on the radiation.
I have since switched insurance companies and am once again covered at my doctors office.
Strongly suggest you take a look at NCCN prostate cancer treatment guidelines...the Bible for many PCa providers....... experts review many latest studies before publishing the annually revised guidelines. Fairly certain it covers your situation re rising PSA after surgery.
There may be more that you can do than just watch the PSA.
My recent experience has shown it is possible to lower PSA with diet and lifestyle changes.
Others here may shout me down, but this is my experience. There is no evidence that the same strategy would do anything useful for anyone else.
I am a fit and active 64yo. 178cm tall and was 79kg in August 2023 when diagnosed with PCa. Based in Sydney.
My PSA had been rising steadily since first tested in 2013 until it went over the threshold of 4 in July 2023. The doc had always said that the PSA was not a concern until it went over 4. (I now know that it would have been better to do an MRI scan earlier - Perhaps at PSA of 2)
My family doctor sent me to a Urologist who did a DRE - positive- then sent me for an MRI that showed 2 lesions at PIRADS 4. Followed by Boipsy that showed 7 of 28 cores with Gleason 3+3=6 cancer and 2 cores with Gleason 3+4=7 at 10% and 40% of the cores. Perinural invasion evident. No EPE. No Cribiform. Next up was a PSMA PET CT scan that did not light up for the 2 PIRADS 4 lesions but showed a 3rd lesion "moderately avid" in the middle of the prostate. No evidence of cancer outside the prostate.
After the initial diagnosis I wanted to do something to slow the cancer progression. After some research I set off on the following strategy.
16/8 fasting - ie only eating between Midday and 7 or 8pm. Only water or green tea at other times. No red meat or processed meat or dairy or eggs. No Bread, Limited chicken. Plenty of green veges and limited starchy veges. I never did drink alcohol or smoke
Adding in 40g to 50g Flax Seed meal per day (available from the supermarket) This is probably the item that makes the biggest difference. Plus 3 cups of decaf green tea per day plus half a cup of cooked or tinned tomatoes (Lycopene) Plus olive oil added to veges to get some calories.
The effect can be seen on the graph above. PSA has dropped from 4.17 to 2.55 in the space of about 4 months. An additional MRI at 4 months has shown that the cancers are still there (including a PIRADS 3 at the location spotted by the PET scan. ) however the cancers are a about 20% smaller and the prostate itself is down from 25cc to 18cc. My overall weight has also dropped from 79kg to 69kg (and steady) which is right in the middle of "healthy" BMI range. I am feeling fine and happy to have a bit less weight to carry up the stairs. Still able to lift the 36kg bee boxes full of honey when working my bee hives.
As a welcome side effect my blood pressure is down from about 140 /90 for the last 2 or 3 years to 115/70 and steady. Cholesterol is also significantly improved to mid range. So if nothing else, Cardio health is significantly improved. I have read that high blood pressure is linked to Prostate Cancer, but no one is sure if it is cause or effect or has the same cause as PCA
I do not pretend that the cancer will go away, but it just may slow down to the point where treatment can be delayed. The diet and lifestyle changes are a bit drastic, but for me better than the side effects of treatment. I have been to see various specialists in the last 4 months to assess the options of Radiation, Surgery and Active surveilance. A difficult choice.
I pay out of pocket for monthly PSA tests to monitor what is going on. My feeling is that dairy and eggs and red meat may be the bad guys and the flax seed meal is probably the most useful add in. 16/8 fasting is not as difficult as I thought it would be.
I do try to eat well. WHen I was first diganosed I was even more strickt, much like you are doing. SInce then, I have become more laxed, but not nearly as bad as most of the country. I rarely eat red meats, no smoking or alcohol ever, and try to eat healthy. But I am again eliminating a lot of the stuff I let slip back into my diet again the past few years. Starting the day with my 32-ounce smoothie maid of fresh organic kale, broccoli, parsley, dill, celery, cucumber, bell pepper, dandelion, water and a whole lemon! YUMMMM EEEEE. But whatever it takes!
my situation sounds similar. I had a RP in 2009. Then readings were 0 and I wasn’t really paying attention. In 2018 I went to a urologist for another matter and she said my last reading was .18 and if a test came back at .2 she would recommend salvation radiation. It came back at .3. I saw the radiologist who started me on ultra-sensitive PSA tests. He radiated the prostate bed, but there was no change in my PSA reading.
I had my PSA tested every 3 months and it would climb slowly. At one point a few years ago I asked if diet would have an effect. The young urologist said no. I thought sugar fed cancer cells so I went on a KETO diet, in 3 months my PSA dropped from .56 to .44. Really didn’t enjoy the diet.
About 3 years ago I had a psma test with Auxim. It didn’t reveal anything. About 10 months ago I had Alana test with a new radioactive agent which found 2 tumors in my lymph nodes . Radiation was suggested. In March I had 5 sessions of radiation on the 2 tumors. After 3 months the PSA test showed a slight increase, oh well. Next PSA reading went down a bit.
The radiologist has me take a regular PSA test note because my numbers are too high.
I am fortunate in that it seems to be slow growing
. This is my past results.
Dec 13, 2018 - Jan 9, 2020 (Table 1 of 4)
Component Dec 13, 2018 Jan 31, 2019 Jun 7, 2019 Oct 23, 2019 Jan 9, 2020
Sorry your numbers are going up but glad its not too fast. I think this is why my doctor is so overly cautious. He wants to catch anything while its small.
Sorry to hear about your experiences with Post-RT PSA rising. I participate in a number of Prostate Cancer Support groups. I have never heard of anyone getting additional cancer from RT. I would question the source of that sort of worry and discuss with a good Radiation Oncologist. What I understand is that PSA of 0.2 or higher after RP is considered a biochemical recurrence. Generally, a PSMA PET is useful to find what is causing the rising PSA, but they only are useful when your PSA is over 0.5. The accuracy and utility of PSMA PET increases to full likelihood of finding a metastasis at around 1.0. After an RP, you should not have any PSA, so you are right to be concerned. Because it is relatively slow rising, you do have time to explore your options. For me, I would be thinking that the PSA is showing that there was cancer outside the Prostate before removal. Something was wrong with that "low risk" assessment. It has settled in somewhere, and wherever it is, I would not want it to be throwing off more cancer cells into my system. By choosing RP with a GL6, you sound like a person who wanted to get this taken care of quickly and decisively. I think that attitude will still serve you well now. I wonder whether a CT scan might help target any possible lesions even with very low PSA? Talk to a good radiologist. Also, I certainly suggest joining a good support group, like the ones we have at the Bay Area Cancer Support Community. Finally, make sure you use the same LabCorp lab for your monthly ultra-sensitive test. That seems to make a difference also and it is good to remove any unnecessary variance in your tests. Best of luck. You are not alone.
Thanks very much for your message and advice. I just wanted ask you this based on the numbers you were mentioning. You said about the 0.2 and 0.5. My number this most recent test is 0.05. (Extra 0) Not sure if that makes a difference in your message or if you already new that.
Yes, absolutely it makes a difference. 0.05 is not 0.5. You are a long way from being able to use a PSMA PET, the most accurate scan for metastatic Prostate Cance (PCa) that I know of. If you had a RP, they probably removed your seminal vesicles and some lymph nodes in the area of the prostate as well, and biopsied all that material along with your prostate. If they told you that you had "clean margins" - meaning cancer contained in the prostate and nothing outside it, you should have been "cured". I am curious what your post-op biopsy showed. The usual procedure when the margins are not clean or there is any external involvement is called "adjuvant" treatment. Usually this is several weeks of external beam radiation to the pelvic bed - the area around where your prostate used to be, because if a few cancer cells got out into your system, that is the first place they would likely be. And that usually works and the immediate effects of the radiation therapy (RT) go away. The goal at your early stages of treatment is to irradiate any prostate cancer once and for all. Another test that might be useful, one that I am starting to use, is a blood test to look for any circulating tumor cells in your blood stream. In my case, they are certainly there and we want to test to see what new mutations in the cells might show up. In your case the question would be whether they can detect any at all, or is whatever is causing this bit of PSA "localized" in the area of the prostate. Lots to discuss with your docs! Let us know what more information they can tell you. Be persistent and make sure you feel like you really understand both what they are recommending and why.
Thanks again. I go see my doc tomorrow with my list of questions. I do know that there was 1 open margin of less than 1 mm. Lymph nodes and everything around were clean. Testing after confirmed Gleason 6 with low risk. But the 1mm open margin is why he has been doing the ultra sensitive psa tests.
Had RP In 2018, G7,clear m, <.02 till last year then got a .04, this year was .05, mine said to just keep a check going every 6 months for now, for more ‘trends’, as its very likely way to early to see on a scan really, and that there's not much to do about it till, if and ‘forever when’, gets to a .10, as it could still ‘stall-out’ at these noisy micro-numbers,and all would be nought,and, also ,like TA sez, when its under .10, ‘doubling’is not the same, Ive been taking 60mg of good sulforaphane daily last 6 months, it has some really good studies in this regard, I would add it to your yummy ‘smoothie’, and so all will be well, there are numerous other normal things that can affect these so m-tiny results,u will be fine, it shall be!
I went back to my doctor. He wasn’t as concerned as I thought but he said come back in 6 months. Another rise and he will highly recommend radiation. And I guess I would agree as I would have steadily climbed. I am seeing the radiologist in the meantime to get his advise and just get established, in case. But doc did say that it’s great that is only at 0.05 after 8 years.
Thanks everyone for your help and words of wisdom. It helps a lot!!
Hi, Very similar to me as per my profile. From a start of <0.03 in 2015, my max has been 0.11 but subsequent falls to 0.076. I'd say your doubling time is insignificant, or irrelevant as you are less than 0.1. After a few years I have found myself more relaxed, I am still tested every 3 months so just got fed up of worrying! Unless I have a measurable DT then I'll just keep eating well and exercising enough., and not rush into SRT. Good luck.
Thanks Julian. I am hoping to see a drop on my next test too. Eating good and added a few supplements to my daily routine that some suggested here. Feeling more relaxed too since getting my doctor visit over.
When I was first diagnosed in 2015 I started taking a lot of various supplements. Then the past few years little by little human nature took over, and I was not really taking much. But now I am back to doing my full assortment of supplements as follows:
Along with that I start my day with a 32-ounce smoothie consisting of: Kale (about 3 leaves), Dandelion (6 leaves), Celery (1 stalk with leaves) Green Bell Pepper(1/3), Cucumber (1/4 large) Flat leaf Parsley, Dill, 1 whole lemon, sea salt, and filtered water.
Not the easiest to get down first thing in the morning, but I do feel better after I drink it!
Our stories parallel each other. Diagnosed November 2010 at 52 with PSA 5.0, Gleason 3+3, mass felt during DRE. Had a radical prostatectomy; came out cleanly; Gleason upgraded to 3+4.
I went 54 months with an undetectable PSA when it came back at 0.05. It bounced around between 0.04 - 0.08 for about 18 months before beginning a steady but very slow rise.
Like you, I was nervous about the short- and long-term side effects of salvage radiation, so I was really reluctant to rush into it. Because my PSA doubling time was measured in years, we agreed to monitor without any additional action.
It took 6 years for my PSA to finally break the 0.2 mark, the historical definition of biochemical recurrence. Those were 6 years of high quality of life that allowed me to do lots of things.
But when my PSA broke the 0.2 mark, we agreed it was time to consider action. Even so, I was still reluctant to blindly zap where the prostate was, hoping that that would do the trick.
I went for a PSMA PET scan at UCLA (paid $3,300 out of my own pocket to get it). My PSA was 0.22 going into the scan in November 2021, and I knew that, at that level, the scan had about a 30%-40% chance of detecting anything. It didn't.
By January 2022, my PSA was 0.26; in March 2022 it jumped to 0.33; and in April 2022, it was 0.36.
At that point, we moved ahead with treatment. We agreed on doing SRT with concurrent androgen deprivation (hormone) therapy.
On May 3, 2022, I received a 6-month does of Eligard (which I tolerated better than most) and on 7 July 2022, we began 7 weeks of SRT ending in late August.
In November 2022, my PSA dropped to 0.05 (mostly from the Eligard). My radiation oncologist said it takes a good 18+ months to see if the SRT was effective. Unfortunately, in my case, it appears we missed the mark.
My PSA was:
March 2023 - 0.13
May 2023 - 0.11 (moving in the right direction)
October 2023 - 0.21 (oh crap!)
November 2022 - 0.33 (double oh crap!)
I have a meeting with the doctor this Thursday to discuss what's next for me.
Given my recent post-SRT/ADT rise in PSA, some may argue that I was foolish to wait the 6 years that I did, and perhaps I was. But in 13 years of dealing with prostate cancer, I've learned that it's all an educated crap shoot. You go with the best information that's available to you at the time, and combine that with your own desires, and make a decision. Once made, don't look back.
In a recent video, Dr. Mark Scholz of the Prostate Cancer Research Institute, argued that those rising PSAs may be better served by letting the PSA rise to perhaps as high as 0.5 ng/mL saying that there’s “a huge advantage of knowing where the cancer is and allowing the radiation therapist to target that spot.” I have a link to the video here on my blog:
As far as side effects from the SRT are concerned... I'm 16 months out and there really haven't been any to speak of so far. (I know that some side effects can show up 3-5 years after radiation.) I'd say my ED has gotten about 10% worse as a result, but that's about it.
In the four months immediately after the radiation, there was increased urinary frequency and urgency, and a definite impact on ED. There was one brief period of about 3 weeks where I went from one bowel movement a day to 3-5 BMs a day. That has since subsided, thankfully.
I hope that helps you with your decisions. Like others have said, you have time.
Thank you for your story. Reading what you said make me understand better what my urologist is saying. If you see a steady increase, why wait for o.2 ? He is confident that it cannot be left over tissue. He said that at these low levels, the cells are definitely in the prostate bed and zapping the area now will cure it. He said we will wait for another test in 6 months but if I am stressing out about it, let’s “just”’do it now and get it over with. Easy for him to say I guess! But if I decide to wait he is ok with that. However if it rises again in 6 month he will definitely recommend the radiation. Also he wants me to get the radiologists opinion who I see Monday. If he feels it should be done sooner then he feels I should go with his opinion. Funny but when did I go from worrying about my math test in the 4th grade to worrying about prostate cancer!?!?
My urologist and radiation oncologist both used the same logic: At my low PSA levels, the cancer is most likely left in the prostate bed. I believe (my opinion, not fact), is that this was the traditional line of thinking in the absence of today's modern imaging capabilities.
You may want to review and discuss this study from June 2019 with your medical team. It shows where in the body the prostate cancer was located using a Ga-68 PSMA PET scan at varying PSA levels. You can see that most of it was found outside the prostate bed at all PSA levels.
On the flip side in the chart above, cancer was not detected by the scan over 60% of the time when the PSA was <0.5 even though PSA indicated its presence. Perhaps the majority of that undetected cancer is, in fact, in the prostate bed. I don't know whether it's appropriate to extrapolate location results when the cancer was detected by the scan to the 60% of cancer that wasn't detected.
Even though we have advanced imaging like PSMA PET scans showing results like these, some are still hanging onto the "zap the prostate bed because that's what we've always done" mentality. (My urologist was unaware of this study when I gave it to him.) Obviously, I went along with their arguments and recommendations and had my prostate bed zapped.
I'm sure you could find studies showing that the prostate bed is the best place to zap, but you have to look at when those studies were done and what type of imaging was available at the time of the study.
Apologies if this causes further confusion and angst, but I thought it was an important tidbit to share.
Lastly, if you're up for the anxiety that comes with PSA tests, it may be worth asking your team to do a PSA test every 3 months to establish a pattern or trend, and to get a sense of how rapidly it's increasing. (In your original post, it appears that you were getting annual tests lately.) It's a compromise that may get you to a decision point sooner.
All the best,
Dan
Chart showing where in the body cancer was located in PSMA PET scans at various PSA levels
Even though it does throw a curve ball at me and does create more concern about the situation, I do thank you for the info. "Not knowing" doesn't make it OK. I will ask the radiologist about all this on Monday. My urologist is 100% confident it is in the bed, but no tests have been done to confirm it. So I will see what the radiologist says. Might also get the recommendation from a Naturopathic doctor I know of that has very highly recommended clients.
I forgot to ask, and I will read that link when I get home, but did they group everyone together, all Gleason scores and all risk type patients, or did they break it down. I was Gleason 6.
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PSA after Radiation
PSA after SBRT for Oligometastatic
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High PSA after surgery
