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

Posted by lacraig1 @lacraig1, 17 hours ago

I had my prostate removed in April. My PSA wasn't zero but rapidly rising.
So I am on ADT (Lupron and Zytiga) and will start radiation tomorrow.
But then what?
What will it take for doctors to say that you are cured? Or even in remission?
Will I be seeing oncologists and having PSAs the rest of my life?

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No, sadly, cancer in 2025 is like still Hotel California — you may be comfortable (and asymptomatic) with undetectable PSA and clear scans, but you can never fully leave, because there's no test yet that can tell whether there are dormant cancer cells still hiding out somewhere in your body. 😢

I understand there's research underway to tell us for sure whether cancer is gone or not, but it's still far from ready for prime time (if it ever will be).

My advice is keep doing your regular blood tests, of course, but otherwise live your life as if you *did* know for sure that your cancer is gone forever.

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When I was diagnosed the Urologist came in and sat down and told me that I had Prostate Cancer. Okay brain can you stop exploding for a few seconds while I try to listen to this man. So the Urologist goes over the next steps, MRI, PSMA and Surgery consult.

He paused and took a breath and said "So you need to come to terms with the fact that from this day forward you will be screened for Cancer on a regular basis".

My PCP confirmed this with me, and the urology office and my PCP will continue to test my PSA at regular intervals.

It stinks but it's necessary.

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Once you’ve had it come back, you can’t be cured, No doctor would say you are cured, But some people haven’t go dormant for decades.

You had it come back pretty quickly, which is also a sign that something else is going on. You really want to get a decipher test to find out what your likelihood of reoccurrence is. Yes, you’ve had one, but this will give you a future view of what’s going on.

Unfortunately, you provided absolutely no information about what your prostate cancer case looks like. Knowing the Gleason score, what your PSA was before your surgery. What other things were found in your biopsy or in the biopsy of your prostate after it was removed.

Were any of these things found in the biopsy intraductal, cribriform, Seminal vesicle invasion, EPE or ECE. (Extraprostatic extensions extra capsular extensions). They can make the cancer much more aggressive.

I had my prostate removed in 2010 and radiation 3 1/2 years later when it came back. You ask what could happen here is an example of my case.

2010 I was 62 and a biopsy showed Gleason 3+4. My father died of prostate cancer and he had radiation so I decided to have surgery. After surgery they told me it was a Gleason 4+3. It was only stage two. 3.5 Years later it came back, I had a Lupron shot 2 months before 8+ weeks of radiation. 2 1/2 years later it came back and I went on Lupron. I became castrate resistant 2.5 years later and added biclautamide. 1.25 years later went on Zytiga, which kept my PSA down for 2 1/2 years. After some AFIB Issues I switched over to Nubeqa. The last 25 months I’ve been undetectable. I became stage four about six years ago, had a metastasis on my spine zapped 2 years ago I did not find out I was BRCA2 Until five years ago. That’s why it keeps coming back, I’ve had four reoccurrences.

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so the train doesn't stop until the passenger dies.

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When your PSA falls to undetectable level than you know that you are in a remission and it can last for very, very long time. For some people it might last forever - meaning that person could possibly die from other causes before recurrence happen again.

Unfortunately, at this point, there is no way one can test and know if true "cure" was achieved and regardless of remission PSA tests will be performed for many years to come (to be on a safe side).

It is hard, but try not think about it in any other way but as a regular check-up , the same way you have your teeth checked twice a year and/ or you have a yearly regular physical.

Wishing you great success with RT therapy and complete eradication of PC !

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Profile picture for jeff Marchi @jeffmarc

Once you’ve had it come back, you can’t be cured, No doctor would say you are cured, But some people haven’t go dormant for decades.

You had it come back pretty quickly, which is also a sign that something else is going on. You really want to get a decipher test to find out what your likelihood of reoccurrence is. Yes, you’ve had one, but this will give you a future view of what’s going on.

Unfortunately, you provided absolutely no information about what your prostate cancer case looks like. Knowing the Gleason score, what your PSA was before your surgery. What other things were found in your biopsy or in the biopsy of your prostate after it was removed.

Were any of these things found in the biopsy intraductal, cribriform, Seminal vesicle invasion, EPE or ECE. (Extraprostatic extensions extra capsular extensions). They can make the cancer much more aggressive.

I had my prostate removed in 2010 and radiation 3 1/2 years later when it came back. You ask what could happen here is an example of my case.

2010 I was 62 and a biopsy showed Gleason 3+4. My father died of prostate cancer and he had radiation so I decided to have surgery. After surgery they told me it was a Gleason 4+3. It was only stage two. 3.5 Years later it came back, I had a Lupron shot 2 months before 8+ weeks of radiation. 2 1/2 years later it came back and I went on Lupron. I became castrate resistant 2.5 years later and added biclautamide. 1.25 years later went on Zytiga, which kept my PSA down for 2 1/2 years. After some AFIB Issues I switched over to Nubeqa. The last 25 months I’ve been undetectable. I became stage four about six years ago, had a metastasis on my spine zapped 2 years ago I did not find out I was BRCA2 Until five years ago. That’s why it keeps coming back, I’ve had four reoccurrences.

Jump to this post

@jeffmarc thank you
I really don't feel like talking about it right now

This ADT has me climbing up a wall

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I don't mind the train ride since I had to get on the train anyway. I don't even mind the short stops every 3 months or so for a quick look around. It's the long layovers that I find bothersome.

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Profile picture for jeff Marchi @jeffmarc

Once you’ve had it come back, you can’t be cured, No doctor would say you are cured, But some people haven’t go dormant for decades.

You had it come back pretty quickly, which is also a sign that something else is going on. You really want to get a decipher test to find out what your likelihood of reoccurrence is. Yes, you’ve had one, but this will give you a future view of what’s going on.

Unfortunately, you provided absolutely no information about what your prostate cancer case looks like. Knowing the Gleason score, what your PSA was before your surgery. What other things were found in your biopsy or in the biopsy of your prostate after it was removed.

Were any of these things found in the biopsy intraductal, cribriform, Seminal vesicle invasion, EPE or ECE. (Extraprostatic extensions extra capsular extensions). They can make the cancer much more aggressive.

I had my prostate removed in 2010 and radiation 3 1/2 years later when it came back. You ask what could happen here is an example of my case.

2010 I was 62 and a biopsy showed Gleason 3+4. My father died of prostate cancer and he had radiation so I decided to have surgery. After surgery they told me it was a Gleason 4+3. It was only stage two. 3.5 Years later it came back, I had a Lupron shot 2 months before 8+ weeks of radiation. 2 1/2 years later it came back and I went on Lupron. I became castrate resistant 2.5 years later and added biclautamide. 1.25 years later went on Zytiga, which kept my PSA down for 2 1/2 years. After some AFIB Issues I switched over to Nubeqa. The last 25 months I’ve been undetectable. I became stage four about six years ago, had a metastasis on my spine zapped 2 years ago I did not find out I was BRCA2 Until five years ago. That’s why it keeps coming back, I’ve had four reoccurrences.

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@jeffmarc
Jeff, it what way did it "come back"?
0.2 PSA, or what was the first clue the little bugger was back?

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Profile picture for peterj116 @peterj116

@jeffmarc
Jeff, it what way did it "come back"?
0.2 PSA, or what was the first clue the little bugger was back?

Jump to this post

@peterj116
He said he will start radiation tomorrow. They would not do radiation unless the cancer had come back, unless his case was so aggressive , they needed to do adjunct radiation.

He didn’t mention why, in my case it hit .2.

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Profile picture for lacraig1 @lacraig1

@jeffmarc thank you
I really don't feel like talking about it right now

This ADT has me climbing up a wall

Jump to this post

@lacraig1
Zytiga is a super ADT that takes your testosterone down even lower.

If you can’t get relief by doing exercises, there are a number of medications that can help. Some people get a lot of anxiety or depression and they need treatment, Even if it’s doing a lot of exercise (Which works for some people I know).

I’ve been on ADT for eight years and was on Zytiga for 2 1/2, Had a lot of side effects, but it’s been manageable.

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