Feels like it's starting all over

So sorry to hear this. Unfortunately, I know the feeling. Although my in between time was much shorter than yours, it still sucks starting over. New scans, new baselines...I wish I could say it's easier the second time around, it isn't. Hang in there!

Many of us are in the same situation you are facing. I had surgery and thought it was over, 3 1/2 years it came back and I had to have radiation. It’s come back three more times since then. The beast doesn’t seem to want to stop.

You need to find out what the PET scan shows. They may be able to zap a metastasis or two and put your PSA back down. If they find a lot of them then Pluvicto Is a good answer that isn’t too aggressive compared to chemo.

The thing is, frequently they find nothing in a pet scan after the PSA has gone up just a little bit. In that case going back on ADT and an ARPI is what they recommend As standard of care. You should try to get Orgovyx and Nubeqa (Darolutamide), Though if they want to try Abiraterone It may work well for you it may not. It gave me an extra 2 1/2 years before I went on Darolutamide. If you have any heart issues, then you’re much better off with Nubeqa.

Prostate cancer is a chronic disease for almost all of us not a deadly disease. Have treatment and you can live a long life as new treatments come out over time.

I too, am very sorry to hear of this recent news for you, and I too, have recently become recurrent. However, like you, I was also "high-risk" (Gleason 9), and in retrospect, I think in many ways, despite being well-informed of things when I was first diagnosed and treated, I was not fully grasping the hidden reality, that I was probably never going to be fully "cured" of the disease.

I lacked any genetic or familial history (i.e., I was deemed free of any BRCA1/BRCA2 gene involvement), and to be clear, your own case may prove to be entirely different from mine in the end (it's important to trust in that), but the fact remains that the cancer (at least for me), was (and still is), an "aggressive" one. There is simply no way to mitigate or attenuate a Gleason 9 or 10. Yes, with considerable help, I hammered it hard enough initially, to gain almost eight (8) carefree years (Yah-hoo!), but with no true "cure" for it, I really should have known from the outset, that one day, I'd be facing it yet again, and again, and again.

Anyway, the very best of luck to you going forward and please keep us all posted.

You need to have the PSMA PET scan ASAP if you have already had a Eligard shot. The ability to pick up where the cancer is decreases with PSA which will decrease with lower testosterone. If not taking another drug such as Casodex the testosterone will increase for the first few weeks so PSA will still be high enough to detect something. By the end of October a PSMA scan will be less effective if you had the Eligard shot in the last two weeks.

This question might be applicable to your current situation as well —> During your treatments in 2023 for your Gleason 9, is there a reason why they didn’t do doublet therapy back then - ADT (Firmagon/Eligard) + one of the 2nd generation androgen receptor pathway inhibitors (Zytiga (abiraterone), Erleada (apalutimide), Xtandi (enzalutimide), or Nubeqa (darolutamide))? That would’ve been recommended protocol for very high-risk (Gleason 9) prostate cancer. (See attached NCCN guidelines chart.)

> Did you have a PSMA PET scan in 2023? What were the results?

> In 2023, did your MRI report or biopsy report mention anything about extracapsular extension, seminal vesicle invasion, perineural invasion, cribriform pattern or intraductal carcinoma?

You say that you’re back on Eligard and will be having a PSMA PET scan sometime in October. Note that the higher the PSA, the more likely a PSMA PET scan is to detect prostate cancer. If your PSA is significantly suppressed by the Eligard (which might fully kick in by then), you might get false negative results from the PSMA PET scan.

As always, discuss all this with your doctor as you’re considering treatment options.

@toomany
Unfortunately, BRCA1 and BRCA2 are not the only genetic problems that matter.

Lynch syndrome, PTEN, RB1 TP53 are just some of the genetic problems that caused prostate cancer to be more aggressive.

@brianjarvis
I went through exactly this issue with somebody I was working with in the last few months. Mark had a Gleason nine, But had no other aggressive issues. He was a T1b.

Both UCSF’s team of doctors and another group I had him talk with agreed that he did not qualify for ARPI because Gleason nine was the only aggressive issue. They would order it for him if he insisted but did not feel he needed it. His insurance would not go along with Nubeqa But would agree to Zytiga.

He had Two sessions of SBRT radiation and multiple sessions of IMRT. He is on Orgovyx however.

@jeffmarc I wouldn't know about these others (never even asked for the BRCA1/2 thing, and I was never tested for any of the others to my knowledge), but yes, I'm sure they're all quite true. I would imagine that obesity would make that list as well.

@jeffmarc
Do you remember what was his Decipher ?

@surftohealth88
Decipher was .88

That did not to sway either Group.