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

Prostate Cancer | Last Active: Mar 30 12:32pm | Replies (9)

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@dailyeffort

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patients in the study were first treated, that the study's data on percent of patients with and time to metastasis is outdated.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 Even though the patients in the study were treated with older standards of first and second line care and outdated diagnostic/imaging/theraputic technology, not that high of a percentage of high risk patients progressed to metastasis in 5 years; and many likely had far more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.

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Replies to "I am very sorry that the Decipher test results didn't bring better news. Looking at a..."

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