Change in Decipher Score

[Harmonie3]

I had G3+4 w low risk decipher score even though my psa was about 15, so I chose focul therapy. Eleven months later my psa was 25 and my decipher score was now high risk. Has anyone else heard of the decipher profile changing like that, especially all within a year ? My doctors said it can happen, but that really spooked me to say the least. As a side note, I've heard Mark Schulz say decipher test is unreliable and is inherently skewed towards higher risk readings.

[Tall_Allen]

Decipher depends on the cores analyzed. If it misses the highest risk cancer, it will give you a low score.

I wish you guys who were duped into using focal therapy would sue -- that's the only way this deceptive practice will change.

[RMontana]

The sample tested must have a complete cross section of the tumor, otherwise you get a non representative test result. PCa is heterogenous (variable), so an MRI guided biopsy is important to make sure the cores are taken of the tumor, as well as the surrounding area. Using Decipher to manage the aggressiveness of your treatment is a correct course of action, unless the sample fed into the testing was not representative. I cant tell from your bio if you got an MRI guided biopsy. If not then I would definitely ask my URO why and if I still had this Dr I would change practices.

Here are some Decipher posts that I made as well as a Map of testing protocols that can be used during our PCa treatment efforts. Rick

healthunlocked.com/active-s...

healthunlocked.com/active-s...

PS I have also heard editorial comments on Decipher, that it is overly negative in its predictive outcomes. But, everything I read is that its the best predictive tool we have for how PCa will behave over time if we do nothing! Any additional treatment you throw at your PCa, after the Decipher prediction is provided, will change the outcomes...its not a static health 'sentence;' you can affect the outcome. But double back on your biopsy and find out; was it MRI guided. If it was not then I would be upset...but, you need to now move on and hit this thing fast. TNX

[Derf4223 in reply to RMontana]

"the tumor" -- but usually there are more than one in the prostate at time of diagnosis

AI Overview

Learn more

Prostate Cancer Signs, Symptoms, Risk Factors and Diagnosis ...

Yes, it's possible to have more than one prostate tumor in the same organ. This is called multifocal cancer.

Explanation

Over 80% of prostates have more than one tumor at the time of diagnosis.

These tumors can be genetically distinct and respond differently to treatment.

Some men have more than one type of prostate cancer, such as a combination of common and rare prostate cancer.

Rare prostate cancers can be more aggressive than common prostate cancer.

Diagnosis

Molecular analysis of DNA from separate tumors can determine if they originated independently.

Tumor location is important when assessing a patient's risk before and after prostatectomy.

Imaging tests, such as transrectal ultrasound, can help detect tumors.

Prostate cancer spread

Prostate cancer cells can spread to other parts of the body, most often to the lymph nodes and bones.

Prostate cancer can come back in the prostate, in the prostate bed, or in other parts of the body.

[Harmonie3 in reply to RMontana]

Thanks for the info. Pretty sure I had a MRI guided biopsy both times, though they were done at different leading medical centers. Assuming a complete cross section of the tumor was taken each time, does it sound unusual for the decipher to have changed so much, within a year much less? Maybe the tumor that was biopseed after my focul therapy was an entirely new legion from its original version, or had simply become more aggressive than in its inception. Hard to know what to make of it ... in any case, I opted for treatment assuming the high risk score was accurate as I didn't want to take any chances.

ps. after reading the above AI overview, it sounds likely my second biopsy must have been on a different tumor.

[RMontana in reply to Harmonie3]

If I were you I would go back and double check to make sure my biopsies were MRI guided. That is an important lose end to tie up; just make sure they were. Water under the bridge at this point, but it makes a huge difference as you can see in the discussion. If they were 'shots in the dark' cores then you dont still may not have the definitive biopsy of what you have. I am assuming, based on the fact that you got them done at major medical centers, that they were MRI guided. Just make sure.

Here is a old conversation thread on Biopsies and Decipher that you may find of interest. My comment is buried at the bottom of this thread. But read thru this...there is a lot of back and forth. We patients, your doctors and others all have an opinion on what has happened and what could happen following what treatments may be needed, but at the end you must decide what to do. That decision is made a lot better and it stands up over time, if you read a lot about your case and understand where you are and what you need to do next. Be comfortable with your research, then make the best decision you can live with over time. No one knows how all this will come out (save one)...but, give it your best effort. That is all you can do. Good luck and let us know how things are developing. Rick

Discussion Thread;

healthunlocked.com/advanced...

Study: Role of Genetic Genomic Testing

healthunlocked.com/active-s...

[Harmonie3 in reply to RMontana]

Thanks very much Rick, I really appreciate your advise. I started orgavix and nubeqa last August and completed radiation w MRI Linac last month and PSA is now undetectable (and was already less than 0.5 in November after only a few months on HT). What sux is RO wants me to stay on HT for 18 months, but that's a small price to pay to give myself the best chance for LT cure. That said, I will plan to confirm both biopsies were MRI guided, though I'd be very surprised if they weren't. Thanks again for your thoughtful reply.

[RMontana in reply to Harmonie3]

Good. Looks like you are proceeding. Look out for your health, your whole health. Check out my 'Woulda-Coulda-Shoulda' list of what I will do in my next life to see if there is anything there can can head off a problem for you; its in my POST area of the site. All we can do is share what pitfalls we ended up in, with the hopes that others avoid them. What other purpose does our suffering thru bad decisions have...good luck. Rick

[Harmonie3 in reply to RMontana]

Thanks again, personally my regret is first doing focul therapy rather than radiation to begin with, but that's water under the bridge.

[Harmonie3 in reply to RMontana]

I can't seem to find your 'Woulda-Coulda-Shoulda' post. Any chance you can send me the link?

[RMontana in reply to Harmonie3]

Sure. Here it is. Every once in a while, I go on and add to it as my life continues. Use what you can and what makes sense to you. Every one of us is on the same path but has a different experience along the way. Good luck.

healthunlocked.com/active-s...

[Harmonie3 in reply to RMontana]

Thank you!

[j-o-h-n]

Greetings Harmonie3,

Would you do us and yourself a favor and update you bio. All info is voluntary but it helps us and will help you. Thanks you and keep posting.

Good Luck, Good Health and Good Humor.

j-o-h-n

[Seasid]

Which treatment did you get? Someone said long time ago on this forum that decider is like a scam.