I think we have a record (in very bad way)

I'm so sorry, and your feelings are very natural.

This might or might not help, but you're still looking at something that hasn't happened yet, and might even be preventable. That should be the first focus. Do everything you can, now, to knock the cancer out. He can tell his onco team that he wants to throw the kitchen sink at it, and they can pull out all the stops.

But let's say it doesn't work out, and the cancer spreads. I know you don't want to think about that right now, but it's probably the terror lurking in the shadows for both of you.

In that case, he'd be in the same situation as me, @jeffmarc, and many others in this forum. We expect to be around a very long time: metastatic prostate cancer is life-changing and frightening, but it's no longer necessarily a terminal diagnosis. New meds can keep it under control for years or even decades (we don't know yet, because there hasn't been time to collect the data). So the terror in the shadows isn't quite as scary as it would have been 5–10 years ago. In fact, more and more oncologists are cautiously starting to think that advanced prostate cancer is becoming a chronic disease that we can live with until old age, like diabetes. (We won't know for sure for many more years, until the data has been collected.)

More here, and best of luck!
https://www.scientificamerican.com/article/treating-prostate-cancer-at-any-stage/

@northoftheborder really says it. What you are seeing is treatable. You are now in a situation where following the guidelines for the best treatment possible can give you the longest life. You will most definitely have to accept the fact that ADT will be part of your life for quite a while and probably another drug like Zytiga or one of the lutamides.

The treatments work, get an MRI and schedule a biopsy and you can really plan the future.

I am very sorry that the Decipher test results didn't bring better news. Looking at a test result of "1" must have been a real blow, and to come on a Friday no less. There are several things that I would like to share that will, hopefully, help you view this score from a better perspective.

First, the score of "1", while a shock, is actually inline with what you already had read about intraductal cancer. When I was diagnosed in 2021 with 4+5 in much of the right half of my prostate (6 of 12 cores). my MO and RO both suggested there was no need for the Decipher test as the 4+5, cribform and EPE already informed us that the cancer would be very agressive. NCCN guidelines classify it as very high risk. I just looked back at one of your earlier posts and I believe that it indicated that there was just a single core (out of how many it didn't say) from the most recent biopsy that had the GS 4+3 with intraductal cancer. So, while the Decipher score is "1" and known to be very agressive, this is not new news as you already read that intraductal cancer is very agressive. The positive perspective in your score is that it might well pertain to a confined single small lesion, at this point. That would be helpful.

Second, the data set from the 2024 Decipher study (link below) used treatment data from 2013 to 2022 (Data Source 2.2). So much has changed in terms of standards of care and new treatments since the majority of patients in the study were first treated, that the study's data on percent of patients with and time to metastasis is outdated. You are catching an agressive cancer at what is likely a much earlier stage of spread in a time when much more is known about what first and second line therapies for agressive cancer should be. That is helpful

Third, The diagnosis in not a death sentence. Even though the patients in the study were treated with older standards of first and second line care and outdated diagnostic/imaging/theraputic technology, not that high of a percentage of high risk patients progressed to metastasis in 5 years; and many likely had far more disease and more advanced disease at diagnosis than your husband.'s Take a look at the charts in setion 3.1.1 the biopsy tested participants. I hope that will help your perspective on what the future might hold.

While receiving a "1" Decipher score today had to have been disturbing, please consider that it is really nothing more than an affirmation that intraductal prostate cancer is a high risk characteristic, something that your research had already indicated. Everything pertaining to your husband's diagnosis and prognosis is exactly the same as it was previously, as is the treatment path you were most likely to choose going forward. I hope that you can hit the reset button and blow off the angst the score report has caused. You two have done your research and set things in motion. My hope is that you will take the weekend off to enjoy yourselves. I feel that self care can make a huge difference in the outcome of this marathon.
Bill
https://www.sciencedirect.com/science/article/pii/S2588931124001834#:~:text=2.2.,2013%20to%20March%201%2C%202022.

Thank you all for responding and writing - it is so much appreciated, I feel isolated in my worry since I try not to show it to anybody around, nor I share it with anybody else. My husband of course can "read" my frustration and can "feel" my worry but thankfully he is person who sees glass not only half full, but "almost full" always and in every situation - perpetual optimist. I try hard not to burden him with my worry and for that reason thank you all for listening because if I did not have this place to share my angst and hear your wise and kind words, I would have much harder time staying grounded. Your experience and knowledge is invaluable.

Yes, it was expected, it is just one of those things that always tricks our mind - some hope in some unexpected good and positive turn of events but again, what would we become without hope. My husband is teasing me that I would be less upset if score was "at least" 0.89 , and that is so true lol, that number "1" and that 100% was like a slap in my face, like "c'moooonnnn, really , ONE , of all possible percentiles it has to be 100 (???) XP

Bill - again, I do not know how to thank you, you really managed to find some small things and facts that can be of comfort and that is what I needed to hear, "possibly positive little something", to hang onto till next step. Thanks also for your time and understanding and for sending me always all those great links.

Wishing everybody great and cozy weekend and sending hugs to all < 3

@surftohealth88
I see you are getting a lot of feedback from others. For all of us getting the news of this can be overwhelming.

Just know that prostate cancer treatments have come a long way the last few years. They have been having outstanding results. Even in the last few years after I was diagnosed more and more treatment options are available.

Think optimistic as the medical profession is really on top of this and can offer your many types of treatments to kick this disease in the butt!

I am not sure where you medical providers is. If you trust and like them then you are in good hands. Many of us got second opinions and that is always open to you.
Good luck!

Bill, really great analysis. So many of the negative things we all read online are decades old and simply rehashed and “refreshed”.
Your post gives much needed optimism and comfort.
Phil

Thanks JC and Phil for stopping by and for words of encouragement :). I know that everybody has very busy life and things that need to be taken care of and you finding time to respond is very much appreciated and gives me much comfort < 3.

As others have said, take a deep breath and then begin to sort through the clinical data and literature.

When reviewing the literature, keep in mind statistics - Bell Curve, Mean, Mode, Averages, Standard Deviations...his PCa may not be an exact fit for those studies. Also, those studies may be dated and given the exponential explosion in imaging and treatment brough about by medical research, no longer applicable.

Those studies and guidelines such as the NCCN, AUA and others represent the science of medicine, The art is you and his medical team's applying the science to his specific clinical data (and insurance, personal preferences and priorities,,,).

This article may help calm the waters.

@surftohealth88 Has it ever occurred to you the Decipher score may be a False Positive -- it happens .
Have a Tesla T3 MRI followed by a Transperineal MRI Fusion Biopsy to determine for sure if there is cancer - and the stage as determined by the pathologist Gleason Score .
Avoid a TRANSRECTAL BIOPSY , as this type has been banned in other countries , Norway for example .Google Mother & Daughter force Norway Government to ban Transrectal Biopsies , following the death of father .
Purchase and educate yourself Dr. Patrick Walsh's book " Guide to Surviving Prostate Cancer " Also go on line to DR. Mark Scholz U - Tube Videos on Prostate Cancer .
Education and understanding that prostate cancer is no longer a death sentence , as it was years ago , will ease your concerns .
As they say : " If you are going to get cancer - GET PROSTATE CANCER " . It's the most curable .
Good luck .