Question about Decipher results

Just saw the Decipher results for my husband. He's high-risk at 0.75. His PSA is 0.006 at one year from surgery. Not sure how to take this info, I am of course very scared.

Does that mean high risk that it will come back or high risk that if it does come back it will be aggressive, or both?

Does this mean we stay the course and continue uPSA every 3 months or does this warrant further/immediate action? RO is discussing with colleagues.

TA,

I did not see the PORTOS score. Based on what the RO sent me I don't think GenomeDx sent that. She sent me everything they sent her which was 2 pages and a fax cover. Is that part of the Grid report? I know I have to ask for that even though I almost don't want to know. God forbid it tells us the response to radiation or ADT will not be favorable. I will ask for it.

Thank you for responding right away. I always want to know what you think. Your explanation helped a lot just as it always does. When we read the results tonight my husband said this only matters if they didn't get all of it out right and I said I think so??

So if there is indeed only a Gleason 3 left behind then we're ok because it can't metastasize and the aggressive/high-risk Decipher score will not matter.

If they were wrong about being a T2 or the Gleason at the margin, then the Decipher comes into play because we know it's aggressive and as soon as I see the rest of the report I'll know if he'll respond well to radiation and ADT should that come into play. All of this speaks to how important it is to have the best possible surgeon and pathologist.

I did wonder (but didn't waste too much time thinking about this since it does not matter at this point) had they ordered the Decipher right after surgery would they have suggested ART? I don't know that answer, but I read that the Decipher trumps the Gleason. Does it trump the post surgery PSA? I think you're telling me at this point it does not. It will be interesting to see what is decided and recommended by our doctors.

We do have the advantage of 1 year undetectable under our belt but I know it can be slow growing (still true with our Aggressive Decipher result?) so this 0.75 can come knocking at our door at anytime. Until that happens I'm going to remain both vigilant and positive.

Glad you said that because I was going to ask (not for our case since my husband already had surgery) if it should become automatic for those deciding between surgery or radiation to have this test so they know how the tumor will react to radiation.

Also woke up thinking if the Decipher measures the likelihood of the cancer metastasizing and a Gleason 3 can't metastasize, that must mean they received part of the 5% of his Gleason 4 otherwise it could not have scored so high as far as likelihood of metastasizing.

Thank you, John!

This may come across as blunt on the internet...but....I'll type it anyway....

All the studies in the world won't tell you the course of his disease. You could be radiating before the end of the year.....or you could be cured for the rest of your life.

You've got a good path. not perfect....but good. If there's a relapse...no number on a gene sheet is going to give you any special insights....or any more knowledge.

The doctors I've seen...the radiologist and numerous urologists...have never even wanted, nor asked, to see 'em. Half the time I take it with me to the doc....and forget to even show it to 'em. The doctor who ordered it did so because he could tell I wanted it. I doubt he's even read it.

Don't get lost in the weeds.

15 month PSA result came back at 0.014. I was praying it would stay at 0.006 but it didn't.

When it went up last time I didn't know his Decipher score yet so this time I'm even more worried about the increase. I haven't talked to the RO yet but I think she'll say to stick with the plan and test again in 3 months.

Boy that Decipher has me worried. The plan is to wait to see if he gets to 0.03 and that would be the trigger for radiation.

Would you guys do anything differently?

not the number you wanted, but it's still low and .03 is still very low when it gets there. At .03 you might want to start the conversation with an RO, but you really need 3 or more consistent increases in PSA before pulling the trigger.

Stay the course and see what the next test brings.

I know that it's emotionally difficult to just wait and feel like you're do nothing, but waiting and monitoring is sometime. So while you feel you're doing nothing, actually you are doing something by active waiting and monitoring.

Hang in there,
Andrew

All the Decipher score measures are the risky mutations of the prostate tumors that were removed. There is a correlation with recurrence across the population - but that doesn't mean Jack will have a recurrence. Nothing below 0.03 even counts.

Jack & Diane said...
...I think I'm doing all that I can. I'm just heartbroken.

I understand this is how life will be now.

Be strong for your hubby and don't let your well-being deteriorate. Be the best advocate you can be and don't get in a position to where you are second-guessing what was done in the past. My wife sometimes laments about "maybe I could have done more for mom.." (she passed away a few years ago) and I tell her you did the very best you could with the information at hand.