Serial mpMRI’s

@ezupcic

PSE is also a very promising biomarker test. IMHO, based on my research, it receives a silver medal to the MPS2’s gold medal….at least at this point…

Never had the “free” PSA test.

Remember my urologist comment and my broadening (based on my erroneous initial biopsy result and 1300 hours of research):

ALL PCa tests are “notoriously inaccurate”…the most important thing (AGAIN ONLY FOR THOSE DIAGNOSED WITH LOW RISK PROSTATE CANCER ON AS) is the TREND…in other words I put no stock in one “free” PSA result, mpMRI result or even a biopsy result….but what is the TREND of multiple tests indicating?

@handera

For my husband there was no "classical" trend, his PSA went up and down, Free PSA was in normal range, PSA was in normal range, the first genetic test showed "low risk in 30 years". His PSA overall did go up in 15 years of surveillance but there were no jumps , it went up and down and somewhat up which was consistent with the aging and prostate growth in size. The only indicator for a new biopsy was that no biopsy was not done in 7 years, and new small lesion appeared in the left part of a prostate. And yes, second biopsy was not correct , he was not 4+3 but actually 4+5 after his gland was examined post RP.

@surftohealth88 It seems that every one of us has his own unique prostate cancer ‘signature’. Your husband’s results and years of AS prove that one size does not fit all, and sometimes the trend is NOT your friend - if there is even a trend to be found…so difficult for us to pigeonhole.
And what about a man with a PSA of 1.0 or 1.5 who is found (by some coincidence or miracle) to be totally asymptomatic with a Gleason 10 -discovered on post surgical pathology??
I met such a man at my surgeon’s office; he demanded a biopsy (notwithstanding his urologist’s protests) because he watched his best friend die from PCa and it frightened him into action. He wasn’t letting that happen to him, no matter what.
The anomalies and outliers are so pervasive that we probably need many more grades, categories and subtypes…it’s enough to drive you nuts🤯
Phil

@surftohealth88 It seems that every one of us has his own unique prostate cancer ‘signature’. Your husband’s results and years of AS prove that one size does not fit all, and sometimes the trend is NOT your friend - if there is even a trend to be found…so difficult for us to pigeonhole.
And what about a man with a PSA of 1.0 or 1.5 who is found (by some coincidence or miracle) to be totally asymptomatic with a Gleason 10 -discovered on post surgical pathology??
I met such a man at my surgeon’s office; he demanded a biopsy (notwithstanding his urologist’s protests) because he watched his best friend die from PCa and it frightened him into action. He wasn’t letting that happen to him, no matter what.
The anomalies and outliers are so pervasive that we probably need many more grades, categories and subtypes…it’s enough to drive you nuts🤯
Phil

@heavyphil
@surftohealth88

One the engineering classes I really enjoyed was called “Numerical Analysis”.

It was exclusively about solving problems using only numbers…plugged into equations that were sometimes as long as your arm.

It was so refreshing to be able to end a 4 page stream of nothing but “hard and fast” numbers (in a plug and chug fashion) and come to a final, neat and elegant numerical solution.

Especially satisfying after ploughing through 25 credit hours of calculus and differential equations where everything had to stay and be finally expressed in alphabet soup notation.

I got into genealogy after retirement, and spent two years finding and triangulating “facts” from various independent sources in an attempt to discern the truth…one final consensus conclusion regarded as truth…in order to prove that a particular couple were actually my 9th great grandparents….I wrote a 350 page book about the subject.

In contrast to these experiences, low risk PCa (and I suspect most chronic medical issues), which is filled with numbers, trends (or not) and independent sources, BUT it doesn’t lead to a single “correct” answer.

In the case of low risk PCa, test data, trend analysis, medical opinions and independent research sources all lead to the same place….a bottomless pit of options.

Each person decides how far down they want to go before they make their “acceptable” answer.

Others may have arrived in the same place of the bottomless pit and made an equally acceptable, but completely different answer.

I say “so be it”.

All the best!

@handera
Well, I wish we had that option ... Our "option" was forced on us by failed AS and crappy urologist.

@surftohealth88

Sorry you feel your husband’s AS failed and that his urologist was subpar.

My urologist, at the time of diagnosis, told me that I will most likely have to enter some type of active treatment down the road; but that AS was certainly an option until that time.

I’m sure you understand that the primary idea of AS is to allow for a period of time (often measured in years) with a zero risk of any negative active treatment side effects; while ensuring that if/when active treatment becomes necessary it will result in the same success rate as if the man moved immediately into active treatment upon diagnosis.

In large group studies, about 33% of AS men will move on to active treatment after 6-7 years and 40-50% by 10 years.

It’s now estimated that 60% of men diagnosed with PCa choose AS; with some eminent urologists indicating that the number should be 80%.

Obviously, AS is only (normally) recommended to willing men who have been diagnosed with GG1 and some types of GG2.

AS is NOT the same as watchful waiting; where a man does no monitoring but waits until PCa symptoms begin to take effect and then attempts some type of treatment.

In my case, I am (and will always be) incredibly thankful for the 2.5 years I’ve been on my AS protocol, even if I find out next week that strange “anomalies” have had there way with me and it’s time to embark on a major active treatment protocol.

I will never consider my AS protocol as a failure. In fact, the beneficial side effects I have received over the last 2.5 years on my particular AS protocol, regarding my overall health, have been an absolutely unexpected blessed surprise!

I hope the treatment your husband received (or continues to receive) is working for him.

All the best!

@handera
As I said - we did not have a "choice". Urologist was not well informed about proper AS since regardless of the "low risk" genetic test he was supposed to do a biopsy every 1 to 1.5 year on my husband's gland. We were never told that nor offered that, and my husband trusted this person 100%. He did not do any research about PC since he was told that it is very unlikely that he will develop real PC that needs any treatment in his lifetime. We told that doctor that we would do treatment as soon as it is deemed, even at 3+4 favorable - AS was never our "first choice" and my husband was never afraid of surgery or any "side effects". He was and is in great physical condition, was on Mediterranean diet his whole life, was exercising regularly, so there was no need for any additional changes in his lifestyle.
My posts have no intent to change anything that you do but are intended to warn new members to be more proactive in their research and not rely on one opinion only. As soon as one has 3+3 discovered, one should have very regular MRIs and biopsies and also have a second opinion about the whole situation, We did not and my husband's AS failed ! It failed since no additional biopsy was done in SEVEN years and from 3+3 his cancer grew to 4+5 without being treated ON TIME, when it was 3+4 favorable, with no rcibriform and IDC present.

You are well informed and what will you choose is up to you. You decided that you do not want biopsy - it is your choice. We did not have that CHOICE, so yeah , AS was a total failure for us.

@heavyphil
@surftohealth88

One the engineering classes I really enjoyed was called “Numerical Analysis”.

It was exclusively about solving problems using only numbers…plugged into equations that were sometimes as long as your arm.

It was so refreshing to be able to end a 4 page stream of nothing but “hard and fast” numbers (in a plug and chug fashion) and come to a final, neat and elegant numerical solution.

Especially satisfying after ploughing through 25 credit hours of calculus and differential equations where everything had to stay and be finally expressed in alphabet soup notation.

I got into genealogy after retirement, and spent two years finding and triangulating “facts” from various independent sources in an attempt to discern the truth…one final consensus conclusion regarded as truth…in order to prove that a particular couple were actually my 9th great grandparents….I wrote a 350 page book about the subject.

In contrast to these experiences, low risk PCa (and I suspect most chronic medical issues), which is filled with numbers, trends (or not) and independent sources, BUT it doesn’t lead to a single “correct” answer.

In the case of low risk PCa, test data, trend analysis, medical opinions and independent research sources all lead to the same place….a bottomless pit of options.

Each person decides how far down they want to go before they make their “acceptable” answer.

Others may have arrived in the same place of the bottomless pit and made an equally acceptable, but completely different answer.

I say “so be it”.

All the best!

@surftohealth88

Definitely agree with your comment: “to be more proactive in their research and not rely on one opinion”

Don’t quite understand that you had “no choice”….if anything my take away of your comment is not to place 100% trust in a physician.

As a PCa patient one MUST take charge of their own disease; even the best physicians have very limited amounts of time to explain all the intricacies of PCa during appointments. ESPECIALLY when initially diagnosed with low risk GG1 or GG2.

Based on your last comment your husband appears to have had an initial biopsy that found Gleason 3+3 and then a 2nd biopsy (sometime later) found Gleason 3+4. After that a seven year period ensued without further biopsies, is that correct?

Did he not get PSA tests every 6 months and follow up mpMRI’s every year during the 7 year run up to finding out he had Gleason 4+5?

At a minimum, standard AS protocol requires regular 6 month PSA testing and follow up MRI’s at least every 12-24 months and biopsies whenever the non-invasive tests indicate progression…otherwise it’s not AS, but more like watchful waiting.

As bad as his “pre-surgery” experience sounds, did your husband end up with positive margins, local spread or any sign of metastatic disease after his surgery?

BTW: I’m not totally against additional biopsies, I just want to see all the non-invasive testing trends (which I’m very dutiful in getting) justify the procedure. I experienced months of severe and extended dysorgasmia from my first biopsy (a known risk of biopsy) and before I risk going through all that again I need to know there’s at least a strong likelihood of finding progression. Others may think that’s silly….but they haven’t walked a mile in my shoes.