Who has has a Decipher Test?

[JolleySprings]

My husband’s decipher results are terrifying.

His score was .91

3% chance of radiation favorable response

56% chance response to ADT

51% chance response to DOCETAXEL

He has an Under-Expressed KLK2

Low AR signaling

High 72% Tumor Cell Proliferation

After RP … his Gleason Score was 8 but at time of surgery all contained, clear margins, and 20 clear nodes. But in 6 months PSA climbed to .6 and then 39 rounds of SRBT plus Casodex and Lupron. All was well for 17 months. Then PSA went from nondectable on ultra-sensitive test to .02 and three months later at .18 and one month after that .26

He is now back on Casodex and Lupron

The first of August we go to UCSF for a PSMA scan

He is 68 years old and very fit, avid cyclist.

I do all the research and I do not think he really grasps the Aggressiveness of this C…

Any success stories out there with similar senerios?

Any suggestions?

His surgery was done at Mayo in Rochester.

Thanks!

[RyderLake2]

Hello, I have been battling this damn disease for over eight years. What surgeons never tell you is that for one man in three, the cancer comes back after a radical prostatectomy. Sounds like that has happened to your husband. My advice is stay on ADT. If hubby’s PSA continues to rise then you are ready for the Pepsi and Coke of second line treatments. They are Xtandi (enzalutamide) or Zytiga (abiraterone). Choose wisely. They both have advantages and disadvantages. You can now ditch the Casodex (bi-calutamide) but stay on ADT. As my oncologist once told me “Stay on the ADT train! We might add things to it and we might take things off it but you stay on the train”. At diagnosis in 2013 my PSA was a little below 1700 with widespread metastasis. Fortunately only in my bones. No soft tissue involvement. With the help of Zoladex, Xtandi and Prolia (denosumab) for bone strength my PSA is currently 0.031. The Prolia is a maintenance dose (injection) and prevents any possibility of a skeletal related event (SRE). Hope that helps. Good luck!

[Tall_Allen]

While you are UCSF, try to see Rahul Aggarwal. He specializes in aggressive subtypes.

[Jmr11820]

I had a high risk DECIPHER score of .83. As a result I had adjuvant radiation. Beyond that, my urologist and RO didn’t do much with it. It gave me my chance of metastasis at 5 years and PC survival at 10 years. Had RP on 9/2019 and RT 6 months after that. PSA has been .0.00 since RT. Checking again in 2 weeks. The weight of knowing my high risk DECIPHER has created a lot of anxiety for me. What was his lowest PSA post surgery before starting other treatments?

[JolleySprings in reply to Jmr11820]

5.2 was the highest it ever got. And post surgery it was .05 …. And I agree …. The Decipher Test creates a lot of hopelessness bc all of his RNA markers seem not to respond to any treatment very well!!! Tall Allen….what are your thoughts in Decipher?

[DJBUNK in reply to JolleySprings]

My situation is very similar to JMR's...G9, RP in 8/19 with SVI & LN+. My Decipher score was 0.71 so I had RT+ADT 6 months later. My pre-surgery PSA was also 5.2. It dropped to <0.03 after surgery but popped up to 0.03 at the 6 month point. It's hard for me to say if the Decipher test had any significant value in my case. I was already in the very high risk category due to high Gleason, ECE and LN+ so radiation & ADT were highly recommended anyway. The high Decipher score only added to that argument for adjuvant treatment, although, as with you and JMR, it does add to the anxiety now

I recently had a genetics test to determine if I had any genetic variants, which I did (FANCA). I meet with my doctor this week to learn the significance, if any, of my results. That is something you could ask your husband's doctor about. Best wishes to your husband and you.

[JolleySprings in reply to DJBUNK]

Thank you for your response! What was your probability on the Decioher test that you would respond favorably to Radiation and ADT???

[DJBUNK in reply to JolleySprings]

My Decipher test was different from your husband's. Mine was performed after surgery so it doesn't include any probability of favorable response to radiation or ADT. It has the same results as JMR's...risk score, 5 yr probability of metastasis, and 10 yr probability of mortality.

[JolleySprings in reply to DJBUNK]

Steve’s was done after surgery also…it is 8 pages

[DJBUNK in reply to JolleySprings]

Well that's interesting. I wonder if I received the entire report. Mine only had 2 pages and it read like a summary rather than a detailed test. I'm going to contact my urological surgeon's office to ask if a more detailed report is available. Thanks

[Jmr11820 in reply to DJBUNK]

Pretty sure they’ve changed the format of the report in the past year or so. Your doc might have a copy of your decipher grid. It was hard for me to interpret and I was told at the time that it was for research only. I didn’t have ADT with my RT because I was told that ADT wasn’t helpful if you had a very low PSA. I think that’s changed now for high risk DECIPHER patients.

[RVALuna]

Jolly,Try this paper Published OnlineFirst May 12, 2017; DOI: 10.1158/1535-7163.MCT-16-0912. U of Ca at Davis ( I believe you are in Ca?) has clinical trials for failing casodex you may want to try, I am doing it on my own as my Casodex is starting to fail after 3 1/2 years.