1. < Prostate Cancer

How could they get my diagnosis so wrong.

Posted by pianoman @philipbrachko, Sep 16, 2023

August 8, 2022 diagnosed with Stage 4 metastatic PC. GS 8, Cancer spread to lymph nodes, seminal veseciles, and bone. After 8 months of ADT decided to have RALRP on July 18th 2023. Results of pathology, small tumor on right side of prostate < 5% of volume. NO METASTISIS , everything else clear. Now considered cancer free. Impotent and incontinent. WTF

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pianoman | @philipbrachko | Sep 20, 2023
In reply to @jc76 "pianoman, too bad. I had my biopsies done at Jacksonville Mayo and my first consultation at..." + (show)
@jc76

pianoman, too bad. I had my biopsies done at Jacksonville Mayo and my first consultation at Mayo oncology/radiology. I had not decided on treatments.

During my consultation with oncologist/radiologist at Mayo Clinic (after my results from biopsie showed cancer, gleason score, stage, agressiveness) he asked if I wanted to do a Decipher test as would be more accurate to determine agressiveness of the cancer. This Decipher test gave me the information I needed to make decisions on treatments.

I am not sure where you are going but does not sound like someplace I would like. But having said that it really depends on where you live and ability to travel to centers that can offer you more. I know if I lived closer to Rochester or Phoenix I would gone there for their proton radiation treatments as Jacksonville does not have it yet.

But I am in Florida and just to far along with having to stay there for treatments. My wife is a Diabetic 1 just diagnozed in May of last year and has yet to get it under complete control so staying close to home and Mayo Jacksonville (where she is treated) was another factor. She gets excellent care there and great providers.

Good luck and hope things work out for you!!

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I wish I had the Decipher test done in the beginning, it was not offered. So I had the Gleason test (8) Come to find out, at best it is 80% accurate(NCI). Many recent studies have it less than 50% accurate causing more prostatectomies than necessary. I requested before my surgery that a decipher test be done on the tumor. Turns out , after ADT they won't do decipher test. and there wasn't enough tumor left after surgery to test. Should I be suspicious ?

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1 reply
pianoman | @philipbrachko | Sep 20, 2023
In reply to @natem "Don't they have to do a biopsy to get a Gleason 8? If so, are multiple..." + (show)
@natem

Don't they have to do a biopsy to get a Gleason 8? If so, are multiple reports mixed up or wrong? Sounds horrific on it's face.

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They did the biopsy in August of 2022, after surgery July 18 2023, the tumor was so small < 5% of volume, they said not enough to do a Gleason test. No decipher test because I was on ADT.

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pianoman | @philipbrachko | Sep 20, 2023

Thanks for caring . The surgery was nerve sparing.

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pianoman | @philipbrachko | Sep 20, 2023
In reply to @ozelli "You said that "PSMA said regional metastatic PC". Was that done prior to ADT? How many..." + (show)
@ozelli

You said that "PSMA said regional metastatic PC". Was that done prior to ADT?

How many mets were there? Single met to lymph node?

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Yes.

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jc76 | @jc76 | Sep 20, 2023
In reply to @philipbrachko "I wish I had the Decipher test done in the beginning, it was not offered. So..." + (show)
@philipbrachko

I wish I had the Decipher test done in the beginning, it was not offered. So I had the Gleason test (8) Come to find out, at best it is 80% accurate(NCI). Many recent studies have it less than 50% accurate causing more prostatectomies than necessary. I requested before my surgery that a decipher test be done on the tumor. Turns out , after ADT they won't do decipher test. and there wasn't enough tumor left after surgery to test. Should I be suspicious ?

Jump to this post

pianoman, What I am told about Decipher test it is done using the biopsies that were taken. When you got the Gleason test it was done from biopsies was it not? If so a Decipher test could have been done on those biopsies taken. That is how mine was done.

Not enough tumor left. They did my Decipher test from biopsies??

Are you dealing with a urologist or oncologist/radiologist. If you had surgery I expect you were being seen by urologist not oncologist/radiologist. If you are still feeling you need more information I would seek a second opinion of your care. The provider you go to can request (with your permission) can have your medical information sent to them to review including your tests.

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1 reply
pianoman | @philipbrachko | Sep 20, 2023
In reply to @jc76 "pianoman, What I am told about Decipher test it is done using the biopsies that were..." + (show)
@jc76

pianoman, What I am told about Decipher test it is done using the biopsies that were taken. When you got the Gleason test it was done from biopsies was it not? If so a Decipher test could have been done on those biopsies taken. That is how mine was done.

Not enough tumor left. They did my Decipher test from biopsies??

Are you dealing with a urologist or oncologist/radiologist. If you had surgery I expect you were being seen by urologist not oncologist/radiologist. If you are still feeling you need more information I would seek a second opinion of your care. The provider you go to can request (with your permission) can have your medical information sent to them to review including your tests.

Jump to this post

Thanks, I will see if they can do it from the biopsies before I started ADT.

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