Decipher Test

Hi @hirejohn, what are the next steps for you? Have you and your team decided on a treatment plan?

Hi @colleenyoung - Just peaked at my earlier post and noticed that I misstated my Gleason score. I'm actually a Gleason 3+3. Currently awaiting Decipher results and will go from there. Active surveillance has been mentioned but not sure if that will work for me given family history of prostate cancer.

Even MORE reason to have Decipher! 3+3 Gleason is merely a starting point - no guarantees it stays this way as Gleason is based on observed numbers of dysplastic cells (and their degree of dysplasia) in a given area. If your Decipher comes back High Risk for metastasis then you can be assured of an increase in your Gleason over time.
My friend went from a 3+3 to a 4+3 in one year but luckily his Decipher score was low; he still needed treatment with those numbers and chose Cyberknife. He’s doing great.

@hirejohn
The 3+3=6 is usually a good number. When you get a 4 on either side and a 7 total is where treatments are recommended.

Not a urologist or R/O so just what I have read. But you state a family history of prostate cancer and that can definitely influence your medical providers to do more testing. The Decipher test will give the aggressive level to a low, intermediat or high.

I see you have been contacted by Colleen. I go to Mayo Jacksonville too. Have you met with a R/O. I was asked if wanted to do Decipher (it was explained what it was) and I said yes and it was done. They also did a bone scan and UFHPTI did a PSMA.
Good luck.

Thanks for the input @c76. Although I have been to Mayo Rochester a number of times for a couple of serious issues, I'm currently working with a team at the Cleveland Clinic for my prostate cancer as my wife and I reside in Ohio. A bone scan was discussed but not ordered as of yet. Not familiar with UFHPTI so would appreciate hearing more. Also wondering about your Gleason score and the results of your Decipher.
Good luck to you as well.

Many thanks, @heavyphil. Always encouraging to hear stories with good outcomes.

@hirejohn, Although you indicate you have a family history of prostate (and maybe especially so) you may want to consider getting a germline PCa genetic test, besides obtaining your Decipher Score.

You can get germline genetic testing for free by registering for the Promise study at the link below. Besides receiving the test results, you can speak with a genetic counselor who will explain them. https://www.prostatecancerpromise.org/about/

Also make sure you get a copy of your Decipher GRID report; which includes a lot of additional information (including a Clinical-Genomic Risk Model assessment), based on the PCa tumor cells taken from your biopsy.

Based on a mpMRI fusion biopsy, my 3+4=7 Gleason (with low volume pattern 4) was classified as "Low Risk" for metastasis, due to my 0.22 Decipher score. This along with the finding I had no genetic variants (mutations) for prostate cancer (based on my Promise study results) allowed me to confidently pursue active surveillance.

13 months after being diagnosed, and tripling my running program (upto ~35 miles/month) and losing 25 lbs, my 12 month follow-up mpMRI showed signs of lesion regression, as compared to my initial mpMRI and my post-biopsy PSA's have stabilized 20% below my pre-biopsy level.

I went to my urologist this morning and he indicates, based on all my data, I can delay another biopsy, since no sign of PCa progression is evident.

My vigorous exercise/modified diet approach has not been easy AND it's no guarantee to be successful for similarly diagnosed men; however, I like to share my story as an encouragement to those initially diagnosed with a similar situation as mine.

There is a viable alternative (I have not even discussed all the beneficial side-effects I've experienced) to immediate treatment, for men diagnosed with low risk PCa...but IMHO it requires implementation of a significant lifestyle change. Some men may not be able (or simply don't want) to adopt such changes...I understand...and to each their own.......

All the best with your results and decisions!

@handera,
All very helpful information. Had not heard of the Promise study but just signed up. Also love to hear about the exercise/diet component as I've been an advocate for many years. The poster guy for a healthy life style with no prescriptions or serious health issues until earlier this year when I was diagnosed with renal cell carcinoma and then prostate cancer. However, I continue to be told that my excellent health and early detection of both cancers have been and will continue to be huge factors towards a full recovery from both.
Again, thanks for all the helpful information.
All the best to you as well.

@hirejohn
Cleveland Clinic in Ohio is an outstanding facility world famous. You are in good hands.

UFHPTI. University of Florida Hospital Proton Therapy Institute. One of the first proton radiaion facilities built and was original built for 125 million back in 2006. It has 5 proton radiation gantries and just went through an update of all gantries and treatment rooms.

If you would like more information you can go on their web site and they will send you a complete packet of their program along with two books you hear about on MCC. One is Walsh and the other I can't recall but are excellent books on prostate cancer.

I would have gone to Mayo Jacksonville if they had had proton radiation and not just photon. But that is specific decision a person needs to make. The success outcomes of both treatements are shown by research to be the same.

The difference is (and still being studied) the reduction of additional damage of photon to other organs and tissues and that radiation goes through body where proton is programmed to stop at a precise areas of wanted treatment and does not continue to pass out through body.

Very helpful. Many thanks, @c76.
On Wednesday, December 4, 2024 at 06:10:32 PM EST, Mayo Clinic Connect < nf+b0d47152+27504811@n1.hubapplication.com> wrote:

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@hirejohn
Cleveland Clinic in Ohio is an outstanding facility world famous. You are in good hands.

UFHPTI. University of Florida Hospital Proton Therapy Institute. One of the first proton radiaion facilities built and was original built for 125 million back in 2006. It has 5 proton radiation gantries and just went through an update of all gantries and treatment rooms.

If you would like more information you can go on their web site and they will send you a complete packet of their program along with two books you hear about on MCC. One is Walsh and the other I can't recall but are excellent books on prostate cancer.

I would have gone to Mayo Jacksonville if they had had proton radiation and not just photon. But that is specific decision a person needs to make. The success outcomes of both treatements are shown by research to be the same.

The difference is (and still being studied) the reduction of additional damage of photon to other organs and tissues and that radiation goes through body where proton is programmed to stop at a precise areas of wanted treatment and does not continue to pass out through body.
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