PSA Rollercoaster...I'm back - Prostate Cancer N...

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PSA Rollercoaster...I'm back

bassguy
bassguy

I am writing to share my story and see if anyone has had any kind of similar experience...I know hard and fast answers are virtually impossible. I am in a place where my PSA is up and down to the extreme. My history:

8/2016 2.1

3/2018 1.5

2/2019 4.6

3/2019 3.8 4K SCORE of 7 (quite low I suppose)

4/19 2.2

6/19 5.9, then a day later for re-check at 4.2, then had a 3T Multiparamentric MRI and got the lowest score possible PIRADS 1

9/2019 1.6

12/2019 2.08

and yesterday... yowza! 13.17 My urologist was shocked as he still maintains cancer doesn't "behave" like this, but he is nonetheless concerned that something might still be up.

Maybe I should have just stopped at the negative MRI and the low 4K and waited a full year or more for a retest. I'm in good health, no complaints, no symptoms of anything. all urinalyses have been negative as well. BTW I am 56yo

Any reactions?

Signed, not quite sleepless thanks to pharmaceuticals in NYC

22 Replies
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You obviously have prostatitis. Nothing much can be done about it - most kinds are unresponsive to antibiotics and are asymptomatic. The good news is that it usually remits on its own. Try another PSA (or PHI or 4Kscore) in 3 months. The bad news is that it may never completely go away and may always confound your PSA tests. There are some new non-PSA-based tests, but since your 4Kscore is low, it seems unnecessary.

bassguy
bassguy in reply to Tall_Allen

Thanks for that reply...my Uro doesn't seem to think it is prostatitis because my urines are always normal and I have no symptoms. I will speak to him again but I'm also considering a 2nd opinion at this point.

Tall_Allen
Tall_Allen in reply to bassguy

Prostatitis is very hard to diagnose - usually one just rules out alternatives. It usually shows no pathogens in the urine and is almost always asymptomatic. I've had it myself. I believe that biopsies and fiducial placement can cause it. In your case, your 4Kscore and your PIRADS argue against PC. BPH usually increases slowly unless there's significant blockage. If you're peeing normally, you can rule out urinary retension. I assume you've refrained from sex or bike riding for 48 hours before your last PSA. That leaves only prostatitis.

bassguy
bassguy in reply to Tall_Allen

Thanks Tall_Allen. I so appreciate what you have to offer here. I am meeting with my Uro again today to discuss next steps, which will probably entail waiting a couple months and re-checking.

bassguy
bassguy in reply to Tall_Allen

Sorry to bother you again with this, but I really do, based on what i see here, value your input. Against my better judgment I agreed to retest yesterday, just one day after my test that yielded that high number(13.17). Uro wanted to rule out lab error. Anyhow, I dropped 4 points in 24 hours to psa of 9. My Uro still sort of poo-poos prostatitis b/c my urine was normal. Just says to retest in a couple weeks and that he can't explain the sudden rise. I am beyond frustrated. Would you get a second opinion? Or just stick with this guy, who at least agrees it isn't behaving like PC, he hasn't quickly jumped to biopsy(which a friends Uro did after one high PSA read), and he can actually admit he doesn't know which I actually find refreshing in ANY doctor.

Thanks again T_A.

Tall_Allen
Tall_Allen in reply to bassguy

It's called "NIH category IV asymptomatic inflammatory prostatitis (AIP)."

That see-saw PSA pattern is very typical of prostatitis. It remits and relapses on its own. Very annoying.

You can ask for a test of C-reactive protein, but that will only tell you that there is inflammation anywhere. Antibiotics are useless:

nature.com/articles/ncpuro0702

Urologists are all over the map about prostatis - ranging from "it doesn't exist" to "let's aggressively treat." They often react to patient's anxiety.

bassguy
bassguy in reply to Tall_Allen

T_A, I want to thank you for your kindness and your thoughtful response to my issue. My Uro falls into the former of those two categories, in that if he can't see it, touch it, have physical evidence for it, he's reluctant to say it exists. We had a long discussion about this Friday and he does maintain for now that this indeed does not look like PC right now, and that he just can't explain the huge leap in my psa number, followed by a number trending down 4 points. He will only go as far as to say "maybe it's some kind of inflammation". he doesn't seem too concerned for me right now, which is also reassuring. Right now. I'm glad about his not wanting to prescribe anti-bios. They always cause tremendous gut issues for me. I had c-diff for months after taking one for a dental procedure 10 years ago. And btw, I also suffer from intermittent low-grade but annoying pelvic pain and groin pain. Again, though, and especially since my MRI was normal, he won't say this may have effect on PSA even though some papers I've read have also talked about this condition and it's possible link to PSA.

Thanks again. I will do my research on this diligently. If there's aparticular resource you like for what I'm dealing with feel free to let me know. Enjoy the rest of your weekend. Much peace and positivity to you...

Tall_Allen
Tall_Allen in reply to bassguy

"I also suffer from intermittent low-grade but annoying pelvic pain and groin pain. "

Those are certainly the most characteristic symptoms of prostatitis. Biopsies (poking shit-filled needles into already inflamed tissue) may only aggravate your condition.. Perhaps you are NIH Category III (explained in the article below).

You may find the following article useful , especially the section titled "The Perils and Pitfalls of Prostatitis," which stabs at urologists like yours:

ncbi.nlm.nih.gov/pmc/articl...

bassguy
bassguy in reply to Tall_Allen

Hello there. Just thought to reach out to update you, and more importantly for me, to ask you a question and for you to put on your patient advocate hat to answer, if you should choose to. June 3rd I was a PSA of 13 (Dec 2019 I was 2.2), next day we re-tested(Uro always like to rule our lab error) at 9 (4 pt drop in 24 hours), then Uro asked me to come back Wed the 17th and we re-tested and I dropped another 5 points to 4.3. While my Uro reluctantly says possibly prostititis - reluctantly because my urines are always normal and he requires data - he wants another re-test in a month to "watch the trend line". Question(s) - am I testing too much? Would you suggest a second opinion? I do trust this guy and appreciate his not recommending needle biopsy yet. But, any thoughts? Thanks T_A.

Tall_Allen
Tall_Allen in reply to bassguy

I would not require any more PSA tests because I am convinced. But I am not you. Do whatever makes you feel comfortable. I thought that article nailed your urologist's cognitive bias quite well.

bassguy
bassguy in reply to Tall_Allen

Thanks T_A. You have been more helpful than you might think. Have a terrific weekend!

j-o-h-n
j-o-h-n in reply to Tall_Allen

Bike riding and sex....

Indian chief being taugh English by a WASP missionary.... House (house) Dog (dog) Food (food).... suddenly walking though the jungle they come across a native couple "doing the dirty". Missionary too embarrased to say what they are doing so he says Ride em bike. Indian chief suddenly shoots a dart from his blow gun and kills the couple. Missionary screams 'why did you do that chief?" Chief replies "he ridem my bike".........

Good Luck, Good Health and Good Humor.

j-o-h-n Saturday 06/06/20202 6:03 PM DST

That's quite a ride. I have experienced bouncing PSA but not like that. Bouncing PSA can happen when an ADT drug loses effectiveness. Are you on any ADT drugs.

bassguy
bassguy in reply to Magnus1964

Thanks for the reply. No, no ADT drugs, or any meds for anything really, other than my statin. I haven't been diagnosed with anything yet. That's the core of my frustration. Sort of a diagnostic limbo. Need to speak to my Uro again today.

Magnus1964
Magnus1964 in reply to bassguy

T-As diagnosis may be correct. Any irritation or inflammation in the prostate area can cause a bouncing PSA.

Good luck with your appointment.

Tommy459
Tommy459 in reply to bassguy

For what it’s worth I would also abstain from orgasm for a week or two before your next test. I realize some disagree with that and I realize the literature Does not say to wait that long but in my experience it has made a difference several times.

bassguy
bassguy in reply to Tommy459

Yes, I agree that there is a lot of disagreement on that. For me I always abstain from the gym and sex for 72 hours pre-testing.

Tommy459
Tommy459 in reply to bassguy

Back in my prostatitis days I think over-the-counter herbal things like saw Palmetto and certain dietary things also help me as well. Having said that eventually my PSA rose to a place where I found cancer.

I read all the comments you have here and I agree with all of them. Just stay on it avoid those things for a week before the test and retest I read all the comments you have here and I agree with all of them. Just stay on it avoid those things for a week before the test and retest

Good luck

will your insurance pay for that many PSA test ?

bassguy
bassguy in reply to aceace12

hasn't been a problem...they also paid for the 4K and the MRI, although THAT required my Uro do battle with them aka a peer to peer review. He did go to bat for me in a big way and that's another reason I have to keep him close regardless of any 2nd opinions. I still wonder if anyone out there has had similar experiences. That really was what i hoping to hear about but you guys are all very helpful so thanks.

ok thanks

Try the selectMDX test.

I have had a bouncing PSA for almost 2 years now, I am 67.

It was never as high as yours, my highest level was 4.8, previously it has been stable at around 2.5 for 24 years, 2.1 was a little high for when I was 43 years old, but it never went up much even when I was on testosterone replacement TRT (Nebido) at age 57.

I went off of Nebido for 2 years to increase fertility, then went back on at age 65.

Before restarting Nebido my PSA was 2.4 but next test it went to 3.9.

Besides Nebido I was "fooling around" with hormones, also injecting HCG, taking DHEA, later using a little progesterone for sleep.

Since going up to 3.9, it went as high as 4.8, but back to 3.7, i was testing frequently (every 4-6 weeks) to get an idea of what was causing the bouncing around and if any supplements or stopping HCG would affect this.

I took a SelectMDX test, which I feel is the best non-invasive PSA test to determine cancer. They massage your prostate and collect a urine sample to test. My results were a very low chance of cancer.

From this website:

The test’s negative predictive value (NPV) is 95%, meaning if the test identifies a very low risk, the physician and patient can be 95% sure the patient does not have Gleason score ≥7 (GS≥7) prostate cancer and avoid a biopsy.1,3

The test has a very high predictive accuracy (AUC 0.85) for high-grade prostate cancer, which is significantly better than the Prostate Cancer Prevention Trial (PCPT) risk calculator version 2.1,3

mdxhealth.com/selectmdx-phy...

I do have an enlarged prostate, it was estimated at 50 or 60 CC, I forget exactly. But I don't have any symptoms of anything, pain, urine retention, etc.

Since I am on TRT, I need to do blood tests, I stopped frequent tests but I am due now for another blood test, my last test was in Jan 2020. I suspect PSA will be above 4.0.

When PSA goes above 4.0, it concerns the clinic I use for TRT, so I like to try and keep it down if possible.

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