Can Prostate Cancer "Take a New Trajectory"?

Posted by ga73ds @ga73ds, Aug 21 7:20pm

Hello, forum friends. I know y'all are not doctors but I've been on this forum long enough to appreciate your knowledge gained from your experiences.

I was diagnosed in Nov 2021. Stage 4a, Gleason 9, Decipher .99

I had surgery in Jan 2022. Cancer confined to prostate, seminal vesicles, and 1 of 12 pelvic lymph nodes. After surgery, I think my PSA was .02, not sure.

I don't remember exactly when, but I had a follow up PMSA scan at some time within the following year. There was a very small spot that showed up on my hip but it was never confirmed if this was cancer or not . I believe my PSA was .1

I started ADT (Orgovyx) in Jan 2023 and 3 months later started radiation of the pelvic area. I completed radiation in May 2023. After radiation, my PSA was < 0.01. I was on Orgovyx for 2 1/2 years and just came off last month (I didn't want to but my Drs wanted me to. I dont know why).

Since radiation and as long as I've been on Orgovyx, my PSA has remained at < 0.01 (for over 2 years). Praise God.

My question is this-- with Gleason 9 and Decipher .99, I've been told from day 1 that my cancer is aggressive. That's why I'm scared to now be off the ADT. Can treatments, if successful, change the "trajectory" of the cancer-- yes, it was G9 with .99 Decipher but I've gone through all these treatments now and maybe the cancer is gone? So, does it still matter what it was/used to be?

I've got labs and appt coming up next month-- 2 months since stopped Orgovyx. We'll see what the PSA is.

Interested in more discussions like this? Go to the Prostate Cancer Support Group.

ga73ds | @ga73ds | Aug 26 5:04pm

In reply to @jeffmarc "Get monthly tests when you stop. I’ve been getting monthly test for eight years. That’s because..." + (show)

Wow .......................

How is Orgovyx + Nubeqa treating you?

jeff Marchi | @jeffmarc | Aug 26 7:09pm

In reply to @ga73ds "Wow ....................... How is Orgovyx + Nubeqa treating you?" + (show)

I was on Lupron for seven years before Orgovyx. I had most of the side effects, but never had the fatigue problem from either drug or the weight gain issue.. Nubeqa is really good. I have noticed no side effects from it.

ga73ds | @ga73ds | Aug 26 8:32pm

In reply to @jeffmarc "I was on Lupron for seven years before Orgovyx. I had most of the side effects,..." + (show)

I think you mentioned that you've been on ADT for a long, long time and will be on it forever? Also, you or somebody mentioned some folks take ADT holidays and it doesn't always work out well-- that they get metastasis and "light up like a Christmas tree" on PET scans. That's scary. Did they not get PSA tested and stay on top of it?

jeff Marchi | @jeffmarc | Aug 26 9:45pm

In reply to @ga73ds "I think you mentioned that you've been on ADT for a long, long time and will..." + (show)

It’s the type of thing where they got off the drugs and their PSA did not rise real fast after nine months or a year they would go back on and then as long as things stayed stable they would come back off again. That’s when the problems started occurring. Didn’t require much PSA rise in order to have the metastasis start to grow?

This doesn’t happen to everybody, but some people end up with pretty serious cases after a couple of suspensions.

There is a study that shows that even staying on ADT and staying undetectable you can have metastasis start to grow. That’s one of the reasons that my oncologist wants to do a CT scan to compare against the previous ones because the PSMA PET scan doesn’t work very well if you have an undetectable PSA.

This is from the below link

The serum prostate-specific antigen (PSA) level after definitive treatment for prostate cancer (PC) is a powerful predictor of outcome. Occasionally, PC progression can occur despite low or undetectable PSA levels. The authors report on the clinical and pathologic characteristics of patients who experienced PC progression with undetectable or low PSA levels.
https://pubmed.ncbi.nlm.nih.gov/17171704/#:~:text=Thirty%2Done%20patients%20(67%25),atypical%20histologic%20variants%20are%20present.
If you do a search like the following you will find more confirmation of this problem

“Study that showed that prostate cancer metastasis can still occur while undetectable”

dpfbanks | @dpfbanks | Aug 29 6:03am

In reply to @ga73ds "Ok. I'm the original starter of this thread. Let me follow-up-- After prostatectomy + radiation +..." + (show)

Very interesting study - my hub would have been a good candidate except his PSA never got to 0.5 - his lung only Mets was discovered with PSA 0.36 - we pondered doing treatment as it had been 17 yrs since RARP and he had no symptoms. He had lost weight but had been playing with a keto diet….Anyway, of two expert docs, one suspected aggressive cancer type, the other (we met after tax started) suggested it was an indolent form. Just finished chemo with docetaxel + carboplatin - follow-up PSMA PET coming up in 2 weeks. Will we ever know what might have happened had we not treated the first time or second? No, so that’s the game. Hub and 4/10 brothers diagnosed including hub; one did seeds and no recurrence, 2 others had surgery and no recurrence. Oh, and a genetic link is yet to be discovered. So again, this disease is incredibly nuanced. It seems beneficial that the approach gets more personalized.

northoftheborder | @northoftheborder | Aug 29 6:50am

In reply to @jeffmarc "It’s the type of thing where they got off the drugs and their PSA did not..." + (show)

Note that the bottom PSA threshold for "detectable" in that study was 0.1. As I've mentioned before, I haven't yet found reports of cancer progression when PSA was < 0.01, though it may be theoretically possible.

I suspect that's one reason many oncologists order the ultrasensitive test for monitoring (as long as PSA remains undetectable), so that they can detect early changes below 0.1.