Biopsy vs Surgery Results
I’ve come across quite a few discussions about the prostate being much worse than what the biopsy had originally indicated.
I understand biopsy is only a small sample but curious if anyone knows of a study or stats how often this is the case.
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@fritzo
Definitely good results from the biopsy.
It sounds like you’re going to be one of the people that doesn’t need to come back here, because nothing ever comes back. You had a very minor case of prostate cancer that got caught early.
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1 Reaction@jeffmarc I am saving your words to keep my head in a good place. I'm hoping it holds true. I thought about your message as I went to get my PSA today.
I guess I'm the classic case that even though mine was caught early and surgery looks to have been successful, I still have been through a roller coaster ride this year with diagnosis, decision, surgery and continuing recovery. I can't compete with the extreme challenges so many face. But, it has been incredibly challenging.
But, I'm truly inspired by everyone who goes through so much more and the support of all of the truly awesome people on this forum.
The really good news...just got my second post surgery PSA test results about an hour after taking the test. Results came in the same as my first one: PSA, TOTAL (CMC) <0.064.
Wish that number was lower....but I'm hoping to continue the trend.
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2 Reactions@brianjarvis Amazing that you still have those news clips. It's the power of good information from reliable sources and then you taking action. Sadly, people now can source their information from places that may not be as accurate as news of the past. (I'm biased, worked in the news industry for a good long time).
I hope I can get used to regular PSA tests and get past that anxiety (just took one today). You know the drill....it's just new for me.
Endo-rectal balloons. Yikes-sounds like something out of a Johnny Knoxville video.
https://ew.com/movies/johnny-knoxville-recovery-from-jackass-penis-injury-variety/
Interesting note; my wife was diagnosed with a very rare lung disease (PHA) in 2000 with few treatment options. Since then, they have come up with so many new treatment options (but no cure). So, if her current treatment starts failing, she has so many more options.
OK-I had not heard of Bragg-Peak characteristics in Proton radiation. I explored Proton vs Photon treatment briefly, but the Proton centers were both 2 hours away, wasn't sure insurance would cover.....and it looked like study results so far hadn't shown a big improvement in outcome/side effects.
But, I guess if the day comes that I need it, hoping they figure it all out. Buying all the time I can.
Thanks for the share!
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2 ReactionsThis discussion clearly shows the value of an MRI prior to making a decision on how to proceed.
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1 Reaction@fritzo The two studies that are usually referenced are COMPPARE and PARTIQoL.
> https://ascopubs.org/doi/10.1200/JCO.2026.44.17_suppl.LBA5012
> https://ascopost.com/issues/april-25-2025/proton-therapy-and-intensity-modulated-radiation-therapy-for-localized-prostate-cancer/
Both studies indicated similar tumor control rates and patient-reported quality of life outcomes between photon and proton radiation for prostate cancer.
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Like I mentioned previously, these days the time between PSA tests is no different than the time between other bloodwork that I get - cholesterol, HDL, LDL, triglycerides, etc. And yet, I wouldn’t be completely honest if I didn’t admit that every time my MyChart indicates “you have another PSA test result” that I hesitate just a bit….”
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Just as with photon (x-rays), the application of proton radiation wasn’t discovered in the medical community for treating solid tumor cancers; it was discovered in the scientific/physics community, and later they discovered that these heavy subatomic particles with wavelike properties acted differently than photons (x-rays).
Even later someone hypothesized “Hey, maybe we can apply this science in treating solid tumor cancers in order to reduce the entry-dose, scatter, and exit-dose that is inherent with photon radiation?”
Proton radiation has been used to successfully treat many types of cancers: pediatric, head, neck, lung, brain, breast, esophageal, pancreatic, liver, rectal, eye, cervical,…..and various types of recurrent cancers (including prostate cancers since 1979: see attached abstract)
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2 Reactions@brianjarvis
I had to reply as have same feeling every time I get my PSA tests after radiation ended.
I will bring up my test results on Mayo patient portal and actually put my hands over my eyes. Then start praying with my fingers crossed and slowly open my eyes. So far no problem and wow what great rush I get when I see good news.
Got one coming up on September 2nd and know I will be doing same hesitation, praying, and holding my hands over my eyes.
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1 Reaction@jc76 Keep track of all your PSA results. One day you’ll look back and see how far you’ve come. (I’ve attached my PSA tracking chart.)
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2 ReactionsGood observation, and SO true. I would also say that, generally speaking, the higher your Gleason Score is from the biopsy, the more likely your surgical pathology report will reveal a greater degree of varied pathology and staging. It only makes sense. BUT...there are opposite exceptions like me at the lower Gleason Scores:
I was "barely" a Gleason 3 + 4 = 7, with just <10% of my cells at level "4" category. I was closer to still being a Gleason 3 + 3 = 6, than the full-blown Gleason 7 (like a 4 + 3 = 7). My urologist was quite happy and confident ("we caught it early!"). Nope. The surgical pathology report came back - without upgrading the Gleason Score - to reveal a LOT of pathology. I had EPE, Surgical margins (only 10% of men have them), and left seminal vesicle invasion ("cells" no tumor or nodule).
I am the guy on this blog that keeps writing this, but it is a good analogy: The biopsy and Gleason Score are "just the tip of the iceberg"...and what could be a large, looming iceberg of bad pathology unseen under the surface. Think "Titanic." The biopsy does not tell you very much at all. Since the tissue samples are taken blindly with just an ultrasound probe letting the urologist know he is "at" the prostate, (s)he is never sure if they sampled the best, most disease places. Yes...the ultrasound probe can show them any bumps or unusual areas, but it does not guarantee that the tiny needle "got" the best tissue sample. That is why they take 12 cores...they "hope" the 12 cores will reveal as much or all that they need to know.
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5 Reactions@rlpostrp This is exactly what concerns me and motivated my post. I’m in the early phase and still trying to figure this out. I am also G7 3+4 <10% and seem to be a “candidate” for the watchful waiting group. Only thing we really know is the cancer isn’t going away and playing the wait game doesn’t sit well with me.
I don’t love the idea of surgery but how does someone know they picked the right rad option without really knowing what you’re dealing with?
Combine that with possibility of future testing later to reveal your cancer isn’t gone or “got worse”.
Now any discussion about surgery options you may have had is changed.
To Ireland1964:
Thanks for the reply to my message. You pose some very good thoughts and questions. When discussing all options with my urologist, he assertively said, with near contempt, "I never do Active Surveillance...YOU HAVE CANCER, so why would we give it two years (or less) to get worse...it is NOT going to go away or cure itself." So that perfectly matches you comment: "...the cancer isn’t going away and playing the wait game doesn’t sit well with me."
No one loves the idea of surgery, but radical prostatectomy is the best choice to ensure you are as "cancer free" as you can be from the get-go. But you accurately offer: "...with possibility of future testing later to reveal your cancer isn’t gone or “got worse”." Exactly. You may not know it yet, but after the best option of radical prostatectomy, or any other option, you will have PSA testing for the rest of your life, to see if the cancer has returned...even after prostatectomy. The first year post-op, you will go every three months for a PSA to see if it is starting to rise. If you get through that first year, then PSA testing is every six months for that next, second post-op year. If you get through that will no increase in PSA, then you move to once-yearly PSA testing...for the rest of your life. Many men, like me unfortunately, end up with "surgical margins" documented in the surgical pathology report (only 10% of men do), meaning that the urologist left some cancerous tissue in your body that you can only hope and pray "dies" before it can find blood supply to start growing itself. My urologist told me that a routine part of the prostatectomy is to remove the blood supply of the prostate "bed" where it sat. Any cancerous tissue left inside you would not have blood supply close by to survive..."hopefully." Cancer cells "move"...they "migrate" so to speak. They have extensions of the flexible cell membrane into which they let cytoplasm flow, creating finger-like extensions called "pseudopods", that they kind of "pull" the rest of the cell up behind it. It happens very slowly, but that is how the cells move. But they need blood supply, like any cell, to do that and survive. Without blood they will die. But..some cells survive long enough to find that blood supply. THOSE are the cells that cause the slow rise of your PSA months or years later. So really...
Once a man is diagnosed with prostate cancer, no matter what he chooses: Active Surveillance, Radiation, or Radical Prostatectomy, it is a "life sentence." Your life has become one of living in 3-month cycles, then 6-month cycles, then yearly "watch and wait", and "hope and pray", wondering if "this next PSA" will be the one that shows an increase that requires "step 2" in your treatment and survival journey.
My particular "grade" of cancer (pT3b) with left seminal vesicle invasion, has about a 33% probability of return... really 25% - 50%, but my urologist said most urologists experience about a 33% recurrence with a pT3b. I just hope - we ALL just hope - that we will be one of the 66% that do not have a recurrence.
The choice of what you do about your cancer is personal, and VERY age relate thing. A younger man between 40 - 60 with a history of prostate cancer in his family, and his desire to live a full life into his 80's or '90's would likely pick the radical prostatectomy because it removes the organ with the cancer, and then you just hope that the urologist "got it all" out of you. A man like me who was 70 years old, but with a familial history of all men living into their '90's (both grandfathers died at 96 - one WITH prostate cancer, and my dad living to 99 years 10 months WITH prostate cancer), tells me that I might have lived just as long doing nothing. But...I am glad I chose the radical prostatectomy, because my surgical pathology report was more ominous than expected. Had I chosen two years of Active Surveillance, I know my cancer would have spread to my second seminal vesicle and very likely lymph nodes, and perhaps even bones.
I may have ED for the rest of my life (still not a twitch of an erection after 17 months, even with the neuraovascular bundles being preserved). That reality is very hard...no penetrating sex with a girlfriend or wife, unless you stick needles in your penis to inject Trimix, which still only works 98% of the time...would I be unlucky and be one of the 2% that it doesn't work for? Who knows...I haven't tried yet (I am divorced and just starting to date again - the woman does not know I had cancer and prostatectomy, and that I have ED).
Talk with your wife about the realities of potential ED and what that will do to your relationship. Hopefully she will be supportive. There was a gentleman on this blog a few months ago, who said his wife is really upset with him...his marriage is threatened, because he can't please her sexually anymore. The majority of us said "get a new wife" because of her utter disregard for what he was going through. She wanted him to be fully cured and to return to the sex life they had before. Unreal.
If you're a praying man, ask God for guidance in making your decision. Weigh your options. While there is no perfect solution, each coming with its own shortcomings, you'll pick the one best for you. I again, would personally opt for the radical prostatectomy because the greatest source of more cancer cells spreading is in fact the cancerous prostate, which will be removed..."gone." After that, it's a crap-shoot...some men write here in this blog that their cancer came back in a year or less, but others live decades before it comes back. About 6 weeks ago, someone wrote that it had been 25 years since his prostatectomy, but his PSA was rising and his cancer had returned. Sad. Good luck to you.