Is there an end to this train ride? and how will they know?

Unless I completely misunderstand my endo and urologist, that cancer can’t be cured. Someone correct me if I’m wrong, please.

i'm hearing it can, depending on a lot of things. like how early it was detected and treated,

But barring a miracle, they'll probably want to see you the rest of your life. At least you'll have regular PSAs. If the number stays below a certain marker, they won't do anything. But they will say that it can always come back.

@lacraig1 "My Zytiga costs $1500 a month". I'm thinking you may need to shop around. I pay $76 a month after I was paying much more than that from a place my doctors sent me to. I now go to one of my local supermarket pharmacies for mine. Talk to local pharmacies and ask them what kind of discounts are available.
Good luck!

I'm almost exactly where you are. I had RP surgery in November 2024, and have a low but rising PSA. We made the decision to move forward with radiation because of some of the adverse factors (bladder neck invasion, cribriform and others) that made recurrence likely. I had the Lupron Oct. 15 and started radiation this week. No issues with the radiation after 3 days but the hot flashes from Lupron are miserable.

I've pretty much convinced myself that dealing with cancer and the regular testing is my new normal. The guys in my monthly support group have been dealing with this for 5-10 years. The testing is less often for them, but it's still there. I'm 68 so 10 years of testing would make that 78, which is about as far into the future as I'm willing to consider.

The nurse yesterday recommended a product called Cylease from a company called Boiron. The flyer says it's for menopausal women but I'm planning to try it. I wake up 4-5 times a night with hot flashes or night sweats, so I'll try anything at this point.

@bonanzaman That's what it costs. I pay nothing. Some kind of program. I think this might be the manufacturer, a specialty pharmacy.

North of The Boarder say's best your never going to leave the Hotel Calif.

@northoftheborder

Yup, I went ten years with undetectable PSA after a RARP. I was intermediate risk (Gleason 3+4) but had a positive margin. This past June my PSA (Quest) was detectable at 0.11 (a Labcorp ultra sensitive PSA test said 0.094). DRE found palpable nodule in my prostate bed and PSMA PET scan showed that nodule lighting up like proverbial Christmas tree. No evidence of distant mets though. Hopefully caught it and treated the local recurrence early (8 weeks of IMRT).

Once in this club, your membership renews automatically.

Sorry to hear of your frustration and situation. I literally wrote yesterday that I've come to the conclusion that "there is no permanent cure for prostate cancer", at least for those of us, as a subset here on the Mayo Blog. We are the unlucky ones. The guys who had successful prostatectomies without any consequences thereafter, don't follow or contribute to this Blog. We here are the subset negative exceptions, the outliers, the unlucky ones who have one or more issues. I wrote: "physicians say they 'practice' medicine", and it is true...it is an imperfect career of knowledge and skill - like many - where they are given what they are presented with, they "do the best they can", but it is only more by God's grace that we might live longer than we thought we might.
I am very frustrated in my journey, as seemingly well as it is going. Like anything in life, my journey has been full of the unexpected...the "ya but" exceptions...the "you have surgical margins and I was unable to remove all of the cancerous tissue", etc. I went from a 6.1 ng/ml PSA to a biopsy that was a Gleason 3+4=7 with only 6-10% of cells being graded "4" (so very close to having been just a 3+3=6), and my urologist saying "great...we caught this early and you'll be here ("alive") easily for the next 15 years", but now to the post-surgical pathology report that said: "EPE, surgical margins, Cribriform glands, and left seminal vesicle invasion" to which my doctor said: "hmmm...seems that your cancer is more aggressive than I thought", and "since you are classified a pT3b, I want you to have a consult with a radiation oncologist because your kind of cancer nearly always comes back within five years." I should have asked him - and will next visit - "do you mean my 'pT3b' status makes me likely for the cancer to come back within 5 years, or do you mean 'ANY' prostate cancer will come back within 5 years?" Because, from what I read here in this Blog, all kinds of men with all kinds of Gleason scores and types of cancer, ALL seem to have the cancer return after the prostatectomy, and after the subsequent radiation, and after the subsequent ADT hormone therapy. It is just a race: will the continually recurring prostate cancer kill me first or will something else kill me first because, thankfully, prostate cancer grows slowly?
So, I went from an overly confident, overly optimistic urologist telling me that "we caught it early" and that I "have at least 15 years of life" ahead of me, to now knowing that I have a more aggressive form, even as "low-moderate risk" as it is, and it will likely come back within five years, so you likely need to have radiation and, "oh by-the-way" become incontinent and impotent for the rest of your life. The only good news is that I have had two successive PSA's at 3- and 6-months post-op that were both < 0.1 ng/ml ("zero"). The radiation oncologist is approaching things slowly: he has ordered my next two PSA tests as "ultra-sensitive" PSA tests in January and April (one year post-op). He wants at least two data points before he makes a decision on "if" and/or "when" any radiation therapy is appropriate. More "waiting."
This prostate cancer is like having a Raven land on your shoulder - or the devil himself...you know it is there, it taps you on the shoulder periodically saying "don't forget I'll be riding you for the rest of your life", and then one day it most definitely WILL tap you one more time saying: "I'm baaaack, and I am going to kill you." You will never live spiritually/emotionally free and unencumbered again. At 8 months post-op, I think about it on a daily basis...not a day passes where I don't think about selling some of my treasured artwork or musical instruments so my kids won't be taken advantage of in trying to sell them after I die. I don't want them to suffer that burden and perhaps guilt of knowing they sold "dad's" artwork or musical instruments for less than half of what they are worth, because they were taken advantage of. I think of whether I will out-live my 2-year old dogs, or if and when either of them or I will suffer the loss of each other first. This is all just sucks. All I try to do is live a normal life, do what I want, and plan on not being surprised when I hear that my PSA is starting to rise, or that I'll be in a diaper for the rest of my life because the radiation therapy - which won't work long-term - fried my bladder and urethra. So...long story short...don't expect anything long term. This is a "train" per your analogy that will go up and down, hard left, hard right, pick up speed, slow down, and give you a rough ride the entire time you're on it...until you're not.

@bonanzaman
Zytiga has been generic for a few years. There’s no reason you have to pay those kinds of prices for it. Ask for the generic version.

I was paying about $20 a month three years ago, Before it went generic I was paying around $200 a month.

@rlpostrp
I had one shot of Lupron, a testosterone suppressor, and my PSA went down almost to zero.
I wanted to skip radiation right there and the Zytiga, another suppressor, until such time as the thing rises again to unacceptable levels.
Long story, but I got on the train reluctantly, because I knew there are no scheduled stops, and it could go on forever.