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Thanks, Jim.

Personally, I didn't worry about that first PSA.

I thought I was made from Teflon because up to then nothing serious had impacted my health.

I thought it would be a nothing.

Again, personaly, it has been a nothing they call "cancer"--more of a label that changed my self-identification and insurance status than a health threat,

I was lucky.But stilll had consequences,

Howard

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Howard you do a good job of summarizing the dilemma of getting a PSA and all the consequences it can cause. You have to be informed as to what a elevated PSA really means before you move ahead with any treatment. Having a small elevation doesn't mean you need treatment right away.

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My pal Peter Swenson, a Yale historian, has had his struggles with the trifecta--PSA, mpRI and BPH. He complains: "An arrogant Yale uro dismissed the idea of an MRI, but I insisted. He wanted to do a biopsy lickety-split."

So far Peter has avoided a biopsy.

He is author of "Disorder: A History of Reform, Reaction, and Money in American Medicine." (My exposes on the AMA are cited in there.)

He reminded me of a urologist's sneak attack of doing an unauthorized PSA.

Here's what he said :

"Hi Howard,

I probably told you this before. I told my PCP not to order the PSA test. I got a result nevertheless, a little over 4. He blamed the lab and wasn't very apologetic. Maybe looked a bit sheepish. He didn't take the blame. Didn't explain anything except said now we should watch it periodically and if it rose at a certain rate, then do something. It rose to about 10 and then back to 7 and fluctuates.

I've dragged my heels all the way. Avoided biopsies, insisted on MRIs. Two found the same tiny equivocal lesion. "Incidentaloma"? They also found a very large prostate, now 109 ccs. Hence no doubt the PSA results. Glad I insisted on MRIs.

I think doctors should have pamphlets to give patients explaining the risks of screening with PSA tests. Tell them to go home and have a think, read more, etc. The AUA, AAFP, and ASCO should produce them instead of just issue guidelines about talking. Maybe their members need to read them. Maybe definitely. That's my 2c worth.

Thanks for what you're writing. I read a lot of it. It has given me backbone to resist going down the slippery slope.

Peter

CM Saden Professor

Department of Political Science

Yale University

https://campuspress.yale.edu/peterswenson/

He adds:"A tiny few may be saved from death by cancer but more killed by stress, depression, suicide, sepsis, etc. And then there's what I would call "demi-death" (to coin a word?) --the purgatory of fear, incontinence and impotence. https://www.youtube.com/watch?v=gK-GWJjA0pc

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May 21, 2023·edited May 21, 2023Author

Thanks, Jim.

Always good to hear from The Pioneer.

I seem to have touched on a very sensitive point.

Seems like we need to know a lot more than we did before we showed up in the urology office.

Is anyone prepared for this maze and all the gremlins of testing?

PSA is confusing, right Biopsy is confusing, right?

Everything seems confusing with this.

And, Jim et al, have you seen the lumpers vs. splitters debate for very low-risk vs. regular low-risk: https://www.medpagetoday.com/special-reports/apatientsjourney/104586

Howard

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Barry,

Thanks for sharing.

BTW, I am hearing more about how exercise with 48 hours, ejaculation. and a blood draw after a DRE don't matter.

This PSA stuff really is a trip down a rabbit's hole.

Howard

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Thanks Howard. Perhaps the issue with consent and the PSA test is alleviated with the shared decision-making model? I recall that my first PSA fifteen years ago was done with my primary care docs advice and my consent. My active surveillance journey has always been with shared DM. Only once did I leave a doctor who did not allow me to fully understand and consent to a test.

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I started down that rabbit hole of Prostate Cancer in late 2006. I had an elevated PSA (never asked my permission) of 4.2 in summer 2006. After two car accidents over several days I asked about the "Just Watch" advice and was sent to a Urologist who did Free-PSA test then Blind Biopsy in November 2006. I avoided high anxiety by reading five books and visiting many websites leading to a Second Opinion on the biopsy slides from Dr. Jonathan Epstein resulting in Gleason 6 rather than (3+4)! I think in an ideal world Routine PSA would work yet too many men would still seek aggressive over-treatment with serious side effects because of Their "It's CANCER - Get It the He'll Out" attitude - An Active Surveillance Pioneer

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Dear Howard

I’m a 78 y/o retired Family Physician, Gleason 6 on active surveillance for two years. I’ve been following your blog for quite some time and recently became a paid subscriber to help you defray your costs. After reading todays article, “PSA: Don’t ask, just test” and multiple other articles I don’t remember any discussions about the actual manner in which the PSA test is performed. When I was in practice and anticipated doing PSA testing I would instruct my patients to abstain from sexual intercourse and any exercises like bicycle riding which might effect the outcome of the PSA test. I would also do the phlebotomy prior to my digital rectal exam so as not to falsely elevate the results. As an aside, the rectal exam would allow me to look for lower rectal lesions and perform a simple test for occult blood. Relating to my own experience, two years ago I had changed my exercise regime to include exercise for my abdominal muscles. This involved sitting on an apparatus with a small bicycle seat with a bar across my chest, attached to a series of weights. As I flexed forward, the weights would come into play causing my buttocks down into the seat. At that time my PSA was in the 4-5 range. My next visit to my physician for routine follow up PSA revealed the level at 10. Needless to say we panicked (me and my physician) until I realized that that new exercise was irritating my prostate. Subsequent abstinence from this exercise brought the value back to the 4-5 range. I’m writing this to suggest that we can’t depend on PSA values unless pretesting instructions are give to the patient.

Keep up you valuable work

Sincerely your

Barry

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