Trust my doctor

Posted by yarddogman @yarddogman, Nov 21 7:27am

I realize my journey has just started and the information is rather overwhelming. Why shouldn’t I trust that my doctor to make most of my healthcare decisions wisely ? For instance,transperineal or transrectal biopsy ? He said transrectal. Biopsy first instead of MRI first ? I did MRI first. He said biopsy first. He is the chief of Urology at this facility. Would he chose procedures based on money ? I would think he is looking out for my best interests. I value everyone’s thoughts

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Profile picture for sanDGuy @sandguy

I recommend that you pay attention to both "heavyphil" and Jeff Marchi in their replies above, as I consider both of them to be something akin to gurus on this forum.

Your doctor does strike me as a little peculiar too, especially with regards to the biopsy BEFORE an MRI!

FWIW, I was treated at a university center of excellence in Southern California, and the sequence was:
1. high PSA noted.
2. DRE (positive)
3. MRI (area of concern noted)
4. trans rectal Biopsy, MRI/ultrasound-guided (quite easy, no infection, drove myself home) found some 4+5.
5. PSMA PET scan for any metastasis (none found)
6. (after consultation with urological oncologist, urological surgeon, and urological radiologist) decided upon NS RARP performed a few months later, now nearly two months ago, doing well!

For me, with an "aggressive" Gleason 9, I had to take action before long, and having been told either approach was ultimately equally effective, at age 71 in otherwise good shape figured I'd tolerate surgery pretty well, plus did NOT want to go through the travails of hormone treatment, which would have accompanied the radiation approach. Furthermore, if cancer DOES return, radiation is still an option, while the reverse approach is less likely to be available.

Best of luck, and you've come to a good place for info here.

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@sandguy great help everyone !

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Profile picture for jeff Marchi @jeffmarc

I know a lot of people that trusted their doctors and ended up with very aggressive prostate cancer as a result. I know other people that trusted their doctors and had prostatectomy when their Gleason Score was only six and they had a low PSA. The medical community decided not to do PSA exams at all because of this, about 12 or13 years ago, Today we have a lot of people with very advanced prostate cancer as a result.

You have given no information about your initial diagnosis. How high was your PSA? Have you had any side effects that could be related to prostate cancer, Something that is unusual actually.

The current opinion is that an MRI should be done first to see if there are tumors in the prostate. Those could definitely show whether or not you needed a biopsy. Unfortunately, in some cases, even though there are no tumors, there is advanced prostate cancer.

Did the doctor do a digital rectal exam and find he felt something in your prostate? That can be a cause for wanting to do a biopsy.

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@jeffmarc
You are absolutely right. Prostate cancer deaths have increased 90% since our government recommended no testing after age 70 back in 2012. Boy did they get that wrong. My doctor refused me PSA testing for 3 years only to find that mine had jumped from 1.4 to 11.1 in those three years. It should have been caught 2 years earlier when it was more treatable. I have completed treatment but had to stop Lupron 14 months early because of unbearable pain and sweating.

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Profile picture for yarddogman @yarddogman

@sandguy great help everyone !

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@yarddogman Exactly!! If it dosnt sound right to you. Always do more research. Never be afraid to ask for a 2nd opion. Some Doctors only know what they know.

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Profile picture for sanDGuy @sandguy

I recommend that you pay attention to both "heavyphil" and Jeff Marchi in their replies above, as I consider both of them to be something akin to gurus on this forum.

Your doctor does strike me as a little peculiar too, especially with regards to the biopsy BEFORE an MRI!

FWIW, I was treated at a university center of excellence in Southern California, and the sequence was:
1. high PSA noted.
2. DRE (positive)
3. MRI (area of concern noted)
4. trans rectal Biopsy, MRI/ultrasound-guided (quite easy, no infection, drove myself home) found some 4+5.
5. PSMA PET scan for any metastasis (none found)
6. (after consultation with urological oncologist, urological surgeon, and urological radiologist) decided upon NS RARP performed a few months later, now nearly two months ago, doing well!

For me, with an "aggressive" Gleason 9, I had to take action before long, and having been told either approach was ultimately equally effective, at age 71 in otherwise good shape figured I'd tolerate surgery pretty well, plus did NOT want to go through the travails of hormone treatment, which would have accompanied the radiation approach. Furthermore, if cancer DOES return, radiation is still an option, while the reverse approach is less likely to be available.

Best of luck, and you've come to a good place for info here.

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@sandguy Hey bud, definitely NOT a guru!! - but more of a student who tries to learn more each day. There are many, many men who have far more experience and knowledge of this disease than I ever will - Jeff Marchi being the chairman of that elite group!
I will concede, however, that I do have a big mouth and I try to call’em as I see’em. And so far I have not incurred Colleen’s wrath so I must be keeping my naturally blue language in check😉.
I am an avid reader and I enjoy trying to learn the ‘why’ of things even though many times the biochemistry is way above my level of understanding.
Thank God for the words…”In Conclusion…”. Best
Phil

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Profile picture for heavyphil @heavyphil

Chief of Urology has nothing to do with clinical excellence unfortunately.
It’s usually political, tied to fund raising or a product of nepotism.
Many of them are more involved in the business end of the specialty unit.
Sounds like your doc is sadly out of date with current thinking…
Phil

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@heavyphil lol. It reminds of the title of Department Chair at Princeton University ( where I used to work) . It sounds good but it often times goes to a faculty member because nobody else wants to do it because you get stuck with all the administrative nonsense. That said, I did choose the chief of urology at MSKCC as my surgeon,lol. He has a pretty stellar reputation as a surgeon.

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Earlier this year my Urologust also recommended a biopsy based on an elevated PSA of 8.1 then two days later 7.8. I asked for an MRI and he agreed. It came back pirads 3…..and a recommendation to repeat in 6 months. My urologist was fine with that but still recommended biopsy. I asked for another PSA in March another PSA came back 5.4 than in June 4.4 then back up to 7.1 in October. I had another MRI in October which was a Pirads 2 with no focal lesions but prostate continues to be enlarged (70ml now from 95 ml in March). Next PSA is in December. Neither my urologist or pcp have really offered any other diagnostic tool other than a biopsy which at the moment would be blind and standard transrectal. I may be just delaying the inevitable. It’s hard to know.

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Profile picture for ezupcic @ezupcic

Earlier this year my Urologust also recommended a biopsy based on an elevated PSA of 8.1 then two days later 7.8. I asked for an MRI and he agreed. It came back pirads 3…..and a recommendation to repeat in 6 months. My urologist was fine with that but still recommended biopsy. I asked for another PSA in March another PSA came back 5.4 than in June 4.4 then back up to 7.1 in October. I had another MRI in October which was a Pirads 2 with no focal lesions but prostate continues to be enlarged (70ml now from 95 ml in March). Next PSA is in December. Neither my urologist or pcp have really offered any other diagnostic tool other than a biopsy which at the moment would be blind and standard transrectal. I may be just delaying the inevitable. It’s hard to know.

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@ezupcic
Your large prostate is probably causing those higher PSA numbers.

I guess you really want to know do I have it or don’t I have it?.

This is a case where a PSE test could tell you whether or not you do have prostate cancer in your bloodstream, and should have a biopsy. The test is 94% accurate.

Just something to talk to your doctor about.

I knew a guy who had a huge prostate and his PSA was 50. He had multiple biopsies and never had any cancer found. Seen other reports of people with large prostates and high PSA, went on antibiotics and their PSA dropped and prostate size dropped. Many variations.

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Profile picture for jeff Marchi @jeffmarc

@ezupcic
Your large prostate is probably causing those higher PSA numbers.

I guess you really want to know do I have it or don’t I have it?.

This is a case where a PSE test could tell you whether or not you do have prostate cancer in your bloodstream, and should have a biopsy. The test is 94% accurate.

Just something to talk to your doctor about.

I knew a guy who had a huge prostate and his PSA was 50. He had multiple biopsies and never had any cancer found. Seen other reports of people with large prostates and high PSA, went on antibiotics and their PSA dropped and prostate size dropped. Many variations.

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@jeffmarc
appreciate the response. I guess I'm a little anxious because my next PSA is in a few weeks. I just wish my urologist and PCP were more motivated to try other diagnostic tests like the PSE or the ExoDX urine test. And it just seems like from everything I've read a "blind standard 12 core transrectal biopsy" is just not the most effective next step.

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Profile picture for ezupcic @ezupcic

@jeffmarc
appreciate the response. I guess I'm a little anxious because my next PSA is in a few weeks. I just wish my urologist and PCP were more motivated to try other diagnostic tests like the PSE or the ExoDX urine test. And it just seems like from everything I've read a "blind standard 12 core transrectal biopsy" is just not the most effective next step.

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@ezupcic
The ExoDX test is only 50% accurate

The PSE test is 94% accurate.

That could give you the answer you need.

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I learned a bit late the difference between a research oncologist and a clinical oncologist. The latter cares whether you live or die. This realization lead me to multiple (4) highly recommended clinical oncologists for second opinions. It is critical to get second opinions and then make your own decisions. Stay away from research oncologists/urologists unless they provide access to a treatment you have chosen you want. (My PCa fight started in 2003.)

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