Recently diagnosed stage 1 prostate cancer

Posted by kyndats @kyndats, Nov 16, 2025

Recently diagnosed with stage 1 prostate cancer, Gleason 6, PSA 4.87, and Decipher 0.78 . Prior to getting the genome Decipher score my doctor and I were comfortable with Active Surveillance. Don’t have my next consult with him for another week and a half. Does that Decipher score knock me out of the Active Subeillance box?

Interested in more discussions like this? Go to the Prostate Cancer Support Group.

Have you had an MRI to see if there are tumors in your prostate and if so, what the PIRADS Score is for them. A biopsy only checks about 1% of your prostate. They could’ve missed whatever caused the high decipher score.

A Gleason six doesn’t call for anything besides actress surveillance unless you have more than six cores that are 3+3..

Was anything else found on the biopsy besides 3+3 cores?

The decipher score is very high, but what is causing it to be so high. There’s something else in that sample that shows that you probably have aggressive cancer. Need to take a close look at the decipher score findings.

It might make sense to get a PSMA Pet scan. Not sure insurance would cover it with the low Gleason score. That could at least show if there was prostate cancer found somewhere in your body.

A PSE test could be done to determine whether or not prostate cancer was found. That test is used to decide whether or not to have a biopsy, If it finds no prostate cancer, you don’t need it.

Just coming up with a few different things to think about. Your situation is very strange.

REPLY

How long were you on active surveillance? Did you have an MRI Pirads Score? Was your PSA on the rise or was it elevated but stable? Any family history of Prostate cancer? Seems like you have to look at a number of factors even with a high decipher score. From what I understand a 3+3 Stage one is low risk.

REPLY
Profile picture for jeff Marchi @jeffmarc

Have you had an MRI to see if there are tumors in your prostate and if so, what the PIRADS Score is for them. A biopsy only checks about 1% of your prostate. They could’ve missed whatever caused the high decipher score.

A Gleason six doesn’t call for anything besides actress surveillance unless you have more than six cores that are 3+3..

Was anything else found on the biopsy besides 3+3 cores?

The decipher score is very high, but what is causing it to be so high. There’s something else in that sample that shows that you probably have aggressive cancer. Need to take a close look at the decipher score findings.

It might make sense to get a PSMA Pet scan. Not sure insurance would cover it with the low Gleason score. That could at least show if there was prostate cancer found somewhere in your body.

A PSE test could be done to determine whether or not prostate cancer was found. That test is used to decide whether or not to have a biopsy, If it finds no prostate cancer, you don’t need it.

Just coming up with a few different things to think about. Your situation is very strange.

Jump to this post

@jeffmarc
MRI showed 2 lesions, one 0.5 cm PI-RADS 4 and one 1.3cm PI-RADS 3. Biopsy of lesions came back benign. 2 cores from right base prostate came back positive for adenocarcinoma Gleason score 3+3. The remaining 10 random core samples came back negative. I was wondering about the PSMA Pet scan. Thanks for mentioning that and for your response.

REPLY
Profile picture for ezupcic @ezupcic

How long were you on active surveillance? Did you have an MRI Pirads Score? Was your PSA on the rise or was it elevated but stable? Any family history of Prostate cancer? Seems like you have to look at a number of factors even with a high decipher score. From what I understand a 3+3 Stage one is low risk.

Jump to this post

@ezupcic
Just got diagnosed a couple weeks ago, so have not really been on surveillance. Pirads score of 3 and 4 on two lesions but biopsy of lesions benign. Adenocarcinoma shows up in 2 random cores from same location out of 12 random core samples. PSA rising. No family history. Thank you for your response.

REPLY

@kyndats
When you have a biopsy your urologist decides how many samples are taken. Mine took 18 samples. Some take a lot more to get samples from all areas and some only deal with areas that are suspicious from a MRI. So this is up to your urologist how many samples are taken and from what areas of what he/she feels is a good sample of your prostate.

Your Gleason Score is very low with the normal caveats of active surveillance. My knowldege of Decipher is not with numbers but using simple language of: Low risk, intermediate, and high risk. Mine came back low risk. Did your Decipher test come back above low risk? Seems strange if came back high with such a low Gleason score. The Decipher is address aggressiveness of your cancer. Gleason is looking at the differences between normal cells and abnormal cancer celss. With a high (if .78 is high)Decipher which is genetic I would if me really do a second opinion on Gleason score as the test is subjective where Decipher is not.

I assume your Decipher test was done on same biopsies you got for your Gleason score. I think you should discuss the apparent difference in the two test and go over your anxiety and confusion. You can also seek a second opinion from a major medical insitution for a second opinion.

Most of the time all you need to do is send your medical information to the second institution and do not have to have an in person visit. I did this with Mayo and UFHPTI to get two opinions on my diagnosis and treatment recommendations.

REPLY

Thank you. Yes the 0.78 Decipher score is in the very high risk category. And the test was done from the same core samples. I am concerned with the inconsistency between the Gleason and decipher. I wonder if something else may be driving the Decipher or, as you mention, perhaps it’s the subjectivity problem with the Gleason. I plan on discussing this inconsistency during my next consult and inquire about sending my results to a center of excellence for another opinion considering the odd results. Also thinking of inquiring about a Pet Scan to see if there is anything else there that may be the driving factor.

REPLY

Definitely very strange. Might also consider a second reading of the biopsy samples. Best wishes.

REPLY
Profile picture for kyndats @kyndats

Thank you. Yes the 0.78 Decipher score is in the very high risk category. And the test was done from the same core samples. I am concerned with the inconsistency between the Gleason and decipher. I wonder if something else may be driving the Decipher or, as you mention, perhaps it’s the subjectivity problem with the Gleason. I plan on discussing this inconsistency during my next consult and inquire about sending my results to a center of excellence for another opinion considering the odd results. Also thinking of inquiring about a Pet Scan to see if there is anything else there that may be the driving factor.

Jump to this post

@kyndats
Did you have a fusion biopsy? That involves using an ultrasound with an overlay of the MRI so that they Tumors can be successfully sampled. Normally, they would take three samples from each tumor. PIRADS 4 Is unlikely to come up with nothing. You also want a transperennial Biopsy, which can get to more of the prostate than the transrectal biopsy.

When they do a biopsy, they only get one percent of your prostate. They could’ve missed something.

With your high decipher score, I would not want to just let this go. Talk to your doctor about how the biopsy was done. Is it possible that another biopsy is needed?

A Gleason 6 is not normally considered an adenocarcinoma, in fact, many doctor say it is not cancer at all. Maybe you need a second opinion on the biopsy.

Either of these doctors are considered the experts in doing second opinions

Dr. Epstein biopsy
https://advanceduropathology.com
Dr. Zhou

Send an email to Ming.zhou@mountsinai.org to inquire about a second opinion and ask for his specific instructions for the process.

REPLY

Yes, I believe it was a fusion biopsy with the MRI overlay but it was a trans rectal biopsy. I’ve read about the controversy regarding Gleason 6 and whether or not to classify it as a cancer. Nonetheless, concerned about the high risk Decipher score. Thanks much for the links re second opinions.

REPLY
Profile picture for retireditguy @retireditguy

Definitely very strange. Might also consider a second reading of the biopsy samples. Best wishes.

Jump to this post

@retireditguy
Thank you. Another great idea. I will inquire.

REPLY
Please sign in or register to post a reply.