Gleason 6 Decipher 0.64. Photon, proton, AS, TULSA?

Posted by ksellers3 @ksellers3, Oct 3 11:44am

I was recently diagnosed with above numbers. Is HIFU and TULSA the same thing? Wry confusing trying to decide which treatment I should try. Thoughts?

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

A Gleason Six is barely considered cancer, in fact, a large medical group got together recently to try to change what Gleason six is called, specifically that it not be called cancer.

What that means is, you don’t really want to treat it yet. Active surveillance is what you should be doing with a Gleason six. It may never become cancer. In fact it is suspected that almost all elderly men have Gleason 6.

It’s your choice, but you shouldn’t be running for treatment yet.

REPLY
@jeffmarc

A Gleason Six is barely considered cancer, in fact, a large medical group got together recently to try to change what Gleason six is called, specifically that it not be called cancer.

What that means is, you don’t really want to treat it yet. Active surveillance is what you should be doing with a Gleason six. It may never become cancer. In fact it is suspected that almost all elderly men have Gleason 6.

It’s your choice, but you shouldn’t be running for treatment yet.

Jump to this post

That must be the averages? I was 3+3 with one sample of cancer. Post op analysis was the same. Center of the prostate no margins. PSA at 1.1. But I had cancer.

REPLY

Biopsies undersample a prostate and genomic testing of the tumor is valuable in helping to determine whether AS or treatment could be selected as the action to take. The Decipher score of 0.64 is likely a bit concerning:
https://decipherbio.com/decipher-prostate/patients/decipher-prostate-overview/
My experience with Decipher: I only had two positive cores (G6 and G7=3+4) with only a small amount in each core. My Decipher Biopsy score was 0.94, which drove my treatment decision to be RARP so that we could find out what was going on in my whole prostate. Surgical pathology ended up being G8=4+4 with multifocal tumors, cribriform, intraductal, and positive surgical margins.

REPLY
@tuckerp

That must be the averages? I was 3+3 with one sample of cancer. Post op analysis was the same. Center of the prostate no margins. PSA at 1.1. But I had cancer.

Jump to this post

With one core a 6 many doctors would tell you it’s not really something you should treat. Others are surgeons and want to do surgery.

I would recommend you go to Ancan.org and join one of their active surveillance chats. You will find other people like you that are not doing anything about a Gleason six and are waiting for something to really happen. You can take many years or never reach the stage where it’s truly cancer that needs to be treated. Ancan has a meeting 10/9 at 8pm eastern time. You will learn a lot.

REPLY

@ksellers3
When I had my Decipher test I was not given a number I was given a low risk diagnosis. I was told they come back with low, medium, or high risk.

The low risk diagnosis changed my proposed treatment of radiation and hormone to just radiation.

You are going ot hear a lot about Photon and Proton and the pros and cons. Every urologist, R/O, and PCP has said the successful treatment of the cancer using either photon or proton radiation are basically the same. What is different is the amount of radiation exposure and thus side affects.

Many new types of photon radiation have improved the amount of radiation damage to surrounding organs and tissues. What my PCP, urologist, and two different R/Os from to treatment facilities is the fact that photon radiation enters the body and exit the body.

Proton radiation release of radiation can be controlled. Meaning less going in and most important stopping at prostrate and or where margins are set up AND DO NOT pass through body.

It is a lot to understand and suggest you do research about all types of treatments available. Then if you need to have it treated have your questions and asked them. Then get a second opinion and asked them again. Weigh the information given you to what your research stated and decide what is best for you.

REPLY
@jeffmarc

With one core a 6 many doctors would tell you it’s not really something you should treat. Others are surgeons and want to do surgery.

I would recommend you go to Ancan.org and join one of their active surveillance chats. You will find other people like you that are not doing anything about a Gleason six and are waiting for something to really happen. You can take many years or never reach the stage where it’s truly cancer that needs to be treated. Ancan has a meeting 10/9 at 8pm eastern time. You will learn a lot.

Jump to this post

Well, I did not listen to my Dr. I told him lets take it out. He did it. So at this point my benefit from the this group has been the expertise and ability to share where to go from here. I am really hoping that 5 years with a psa of < .01 that I am done with the cancer and all the treatments. So the subject of erections raised my interest. Yours and others on here are so much more knowledgeable than I would ever hope to be. Thanks.

REPLY
@tuckerp

Well, I did not listen to my Dr. I told him lets take it out. He did it. So at this point my benefit from the this group has been the expertise and ability to share where to go from here. I am really hoping that 5 years with a psa of < .01 that I am done with the cancer and all the treatments. So the subject of erections raised my interest. Yours and others on here are so much more knowledgeable than I would ever hope to be. Thanks.

Jump to this post

Your reaction to the 6 is why doctors are wanting to change a Gleason 6 to a name other than cancer. It is likely your PSA would still be undetectable if you had done nothing. That’s the whole reason they have active surveillance, to let the 6’s wait until there is actually something to treat.

There is one guy in the Ancan.com active surveillance group that is as anxious as you were, he is still waiting, but panicked all the time, that something will need treatment.

You got your anxiety over immediately.

REPLY
@farmanerd

Biopsies undersample a prostate and genomic testing of the tumor is valuable in helping to determine whether AS or treatment could be selected as the action to take. The Decipher score of 0.64 is likely a bit concerning:
https://decipherbio.com/decipher-prostate/patients/decipher-prostate-overview/
My experience with Decipher: I only had two positive cores (G6 and G7=3+4) with only a small amount in each core. My Decipher Biopsy score was 0.94, which drove my treatment decision to be RARP so that we could find out what was going on in my whole prostate. Surgical pathology ended up being G8=4+4 with multifocal tumors, cribriform, intraductal, and positive surgical margins.

Jump to this post

I'm curious. I'm about to undergo TULSA-PRO for one small tumor. G7 (3+4) less than 10% 4. Decipher Biopsy score 0.78. No cribriform. No other tumors visible on MRI. Did your biopsy not indicate cribriform? I had 2cnd and 3rd reads done on my biopsy samples at both Johns Hopkins and Mayo Rochester. Neither indicated cribriform. I'm wondering why your biopsy results didn't show that fact. For me, I'd be doing AS if it weren't for the Decipher score.

REPLY
@pdcar4756

I'm curious. I'm about to undergo TULSA-PRO for one small tumor. G7 (3+4) less than 10% 4. Decipher Biopsy score 0.78. No cribriform. No other tumors visible on MRI. Did your biopsy not indicate cribriform? I had 2cnd and 3rd reads done on my biopsy samples at both Johns Hopkins and Mayo Rochester. Neither indicated cribriform. I'm wondering why your biopsy results didn't show that fact. For me, I'd be doing AS if it weren't for the Decipher score.

Jump to this post

Cribriform was in one of my two positive biopsy cores, but not quite enough to push my biopsy Gleason score higher than 3+4=7. My second opinion on my surgical pathology, from an Epstein trained pathologist, had this to say: "The dominant nodule is almost entirely cribriform carcinoma (>95%). As such, the overall Gleason score for the dominant nodule is Gleason score 4+4=8, with minor high-grade pattern 5 as described above."
I BCRed 2.5 years after finish of adjuvant RT for dealing with the positive margins.

REPLY

HIFU and Tulsa Pro are both High Intensity Ultrasound, but, Tulsa is much more precise. It is done in an MRI and exact location and temperature is monitored in real time. I had Tulsa on July 17 at Mayo in Rochester. Full writeup of of my experience: https://connect.mayoclinic.org/discussion/tulsa-pro-experience-mayo-clinic-mn-july-2024/

Medicare and supplement covered all but $6. I am part of their clinical trial.

REPLY
Please sign in or register to post a reply.