Decipher Results and Outcomes

It sounds like you could be ready for a second drug like abiraterone or one of the Lutamides If your PSA starts doubling on Orgovyx. Ask your doctor what drug/treatment makes the most sense now, But I suspect he just wants to wait . Your Decipher score looks real good but something’s creating PSA because you Have a PSA of .2. Thing is, that’s not very high, If it doesn’t start doubling over the next few months, you can wait until it starts to rise significantly before doing more.

I had surgery and 3 1/2 years later when it came back, had Salvage radiation. When it came back 2.5 years later I started on Lupron and when it failed, and I became castrate resistant. And then started Abiraterone, After 2.5 years on abiraterone I switched to Darolutamide. That sequence has kept me pretty healthy and the cancer undetectable between 4 relapses.

The standard lab PSA has a bottom of < .1 not .2. The ultra sensitive test goes much lower, below .01.

@namrac
So sorry for your experience.
My PCP told me on December 31st that .1 is the lowest PSA reading given as that would indicate undetectable.

My last one at 1.5 years of radiation only was .22. If you still have your prostate (you do not) you are going to have PSA level. Low numbers on PSA do not mean you don't have prostate cancer. My PSA when I had my biopsies was 3.75. It was the continuing rise that PCP did not like and referred me to urologist.

What my PCP, R/O, and urologist say it is the continuing rise of PSA numbers that are a concern.

I did not have prostate removed nor hormone therapy so cannot contribute to your experience with that. I wish you well!!

My RO and others have told me that the PSA can really go up and down after radiation so I wouldn’t sweat it right now. The most important thing is to have 3 month PSA tests to see the trend in either direction.
But with that extensive lymph node dissection and low Decipher score you should have been sitting pretty after surgery, so it does seem unusual to me that you required salvage radiation with all those factors in your favor.

You may be experiencing the "PSA bounce" as my RO calls it. Prior to SBRT and six months of Eligard, my PSA was 14.7 in February 2024. At my first follow-up in August 2024 it was .18. At my December followup it was .08. However, he did remind me that the numbers can "bounce" up and down over time, and he'd be more concerned about an upward trend than one-off changes.

Thanks Everyone it helps to hear others stories with positive outcomes with this curse.

Actually you need to be at < .1 To be considered undetectable. .1 is denoting that you do have something causing PSA. If you have Had no treatment then .1 or even .22 is not a big deal. What you’re looking for is doubling time not just what the PSA is.

I was at < .1 For almost 3 1/2 years after surgery, And for almost 2 1/2 years after salvage radiation. At .2, 3.5 years after surgery, they said I need Salvage radiation. And similarly at .2 after radiation They said I should be on Lupron.

Just some things to think about.

I didn’t initially have a Decipher test but when I did it reflected the fact that I had aggressive PC and explained prior events:

Nov 2023 PSA 13.8
Jan. 2024 Prostatectomy
Pathology:
Gleason 9
Extracapsular extension
Clear margin
No lymph node involvement
April 2024 PSA 0.31
June 2024 PSA 0.39
June 2024 Lupron( prescribed 18 months
July-Aug 2024 37x Pelvic fossa radiation
Nov 2024 PSA 0.02
Nov 2024 Decipher test 0.99(!)
Dec 2024 second opinion at center of excellence revised Lupron to 6months so finished Lupron
Now on monthly PSA/T/blood panel test
Dec 2024 1st monthly test:
PSA 0.02. T= 4

You had a much better Decipher score which bodes well since it suggests a less aggressive PC . What was your post RP Gleason?

I will follow the medical professional information given to me by my PCP, urologist, and R/Os on medical advise. My PCP told me that .1 was the lowest number given out as anything below that means undetectable. So you would not get a number below .1 This comes from Mayo Jacksonville.

Mayo specialists and PCP advise they don't give numbers below .1.

I don't think doubling of PSA is the concern. It is the continued rising of PSA each time you have it done especially if you are having it done every 1-3 months. This came from my Mayo PCP, Mayo urologist, Mayo R/O and UFHPTI R/O.

After radiation treatments end my R/Os at UFHPTI and Mayo advised I will have some bumps up occassionally and were common. Again stating that the concern is continuing rising to see what causing.

Having your prostate removed is a total different cicumstance and PSA levels than still having a prostate which you will have PSA levels up and down.

.1 isn’t quite as low as they can go however, They can differentiate between .1 and < .1, They don’t have a number for it below that but they know it’s < .1, which is sort of a number In the mathematical world. You also said your surgeons equipment didn’t go below .2, after getting exactly that 1 month earlier.

Mayo Clinic uses The ultra sensitive test and requires it to be below .01 in order to be undetectable. They’re not the only one.

You should ask Your doctor about the doubling time, They are quite aware of it and if you’re doubling time was fast, less than 3 months for example, they would do something quickly. What they are waiting for is for the PSA rising in a shorter period of time. That is calculated for prostate cancer as the doubling time. Do a Google search and you will see.

You are on Orgovyx , if your PSA has a significant doubling time you would be considered castration resistant, and get one of those two drug types I mentioned.

If you have radiation it can take years for your PSA to really get to its low point, Much quicker for most people. And it can bounce around as they told you, but trending down

@jeffmarc
We on MCC are not professional medical experts, specialist or doctors. I post that all the time I am not and thus just my personal expereinces and direct knowledge of my diagnoses and treatment. I would not tell others what to do or not to do, diagnos antother's medical condition or what specific treatment they should get for them.

Even getting diagnoses or recommending specific medical treatments from medical professionals, medical expert, doctor, or specialist that are not your personal doctors and/or do not have the patients complete medical history, all medical tests, procedures, medical and mental issues, and information needed to do so should be cautiuos if applicable to them personally.

I recently was on MCC in a different forum about heart rythm. A poster posted what medication should I take and listed the medical issue. The mentor answered that MCC is not a forum to optain medical advise. It is a forum for others to share their expereinces with the medical issue, their specific personal journey and provide inspirations to others.

You posted: "You also said your surgeons equipment didn’t go below .2, after getting exactly that 1 month earlier."
Where is that on my post? My surgeon who did my biopsies never mentioned to me anything about .2 levels on Mayo equipment nor anyone else.

I posted a reply to another poster what my Mayo PCP in our last consultation after my PSA test came back at .22. My PCP advised Mayo Jacksonville Lab does not give number below .1 as below .1 would be considered undetectable per Mayo Jacksonville lab. He did not advise what other labs do or give numbers just my specific test and what Mayo Jacksonville lab does on PSA testing.

You also posted: "You are on Orgovyx , if your PSA has a significant doubling time you would be considered castration resistant, and get one of those two drug types I mentioned."
I am NOT on Orgovyx, never posted I was. And if I was I would be relying on what of the most prestigous medical facilities and specialist to guide me on what my treatment options were.

When I posts I make sure I inform posters I did not have hormone treatments, the reasons why my R.Os (two separate consultations) did not put me on is specifically to my prostate cancer, diagnosis and risk level. Thus I cannot comment on hormone treatments from my personal expereince. I also say this about prostate removal as I don't have any personal expereince with it either.

What I do is mentioned what I did and had done and why I personally made the decisions. I always mentioned talk to your medical professionals about this or that and see if applicable to them. If you don't like what they say or are recommending I personally would get second opinion. I posted that the reasons I personally got a second opinions was to have the added diagnosis and treatment options coming from different medical professionals not because I did not respect the information given to me by either consultations experts.

I post what my personal expereinces with something. I would not post something I read on goggle. I learned about Decipher tests, PSMA tests, bone scans, MRI with contrast, transpernial biopsies with MRI Fusion, and phtoton and proton radiation I learned from my expert medical professionals and personal experience. I only post my own personal expereinces with prostate markers, Space-Oar and getting 30 rounds of proton radiation. I also post my personal side affects, and my consultations and follow ups emphazising this is me personally and not what you should expect, do. or is best for you.

Everyone has different levels of qaulity of life expectations, pain tolerance, mental outlooks, stress and axniety, and what is best for them is what is best for them and their personal journey with prostate cancer. We are all different with each cancer diagnosis, specific expereiences, tests, side affects, outcomes a specific and personal expereinces.