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Many years since radical prostectomy: PSA values rising

Posted by fag @fag, Jun 4 9:45am

I had radical prostectomy 25 years ago and controlled years of the psa values. in the last four years those values have increased from 1.1 to 5.2 in four years. Done PET test with nucleotide and found activity in the pelvic bed. The urologist+oncologist suggest ADT and IRMT for 2 years.I am 87 years old with ,as often usual, kidney problems and blood pressure medically controlled. I have read that the side effect of the ADT are often worse than those from radiation treatment.
Given my life expectation, should I simply do nothing?

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Jeff Marchi | @jeffmarc | Jun 7 6:52pm
In reply to @jeanadair123 "@jeffmarc Thank you so much for the information I will discuss this with his doctor. I..." + (show)
Profile picture for jeanadair123 @jeanadair123

@jeffmarc Thank you so much for the information I will discuss this with his doctor. I have to say though that the Lupron was supposed to prevent any further cancer it appears it didn’t since it has spread? But at least he didn’t have any side effects.We wouldn’t have known if I had not asked for a new pet scan. It’s exhausting being so proactive all the time.
Excuse my ignorance but what is PC? Chemo?

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@jeanadair123
Was he getting regular PSA tests? While on Lupron , you need to get them every three months. If the PSA rises, then you need to do tests. If your doctor was not keeping up on this, there is something very wrong.

PC= Prostate cancer
Chemo=chemotherapy. Treatment using drugs that are injected (infused) into the veins over a period of time, an hour or usuallymore. You have to go in to have it done.

I had surgery and 3 1/2 years later my PSA started rising, so I had salvage radiation. 2 1/2 years after that, my PSA started rising again, and I went on Lupron. 2 1/2 years later, my PSA started rising again, and I became what they call castrate resistant, which your husband now is. They put me on Zytiga Which caused a lot of problems with my heart. Nowadays, they have the drug called Nubeqa (Darolutamide) And it’s a lot easier on the heart and your body. It has no side effects at all really for most people..

These are things to talk to your doctor about. If they try to put your husband on Zytiga Tell them you want Nubeqa. The company that makes it Bayer Has a deal where you can get it for free if you are not high income. Even if you are high income, the most you will ever pay for drugs this year is $2100 as long as he is on Medicare.

Just some things to talk to your doctor about.

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jeanadair123 | @jeanadair123 | Jun 8 10:25pm
In reply to @jeffmarc "@jeanadair123 For one, you should ask to switch to Orgovyx. It has fewer side effects for..." + (show)
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@jeanadair123
For one, you should ask to switch to Orgovyx. It has fewer side effects for most people, It is better for your heart since it doesn’t cause arterial sclerosis buildup and the testosterone comes back much quicker when you stop taking it.
Normally, it would go on another drug like Darolutamide, It has almost no side effects, but works very well to get the PSA down.

Then there is another option chemo or Pluvicto Are pretty commonly used with the condition your husband is in.

Check out this study which covers a way your husband could be treated without Lupron.
https://connect.mayoclinic.org/discussion/pluvicto-without-adt-for-castrate-sensitive-patients/
Since this treatment discusses using Pluvicto you should be aware of these things

Be aware that it works really well for 33% of people OK for 33% of people and not at all for 33% of people.

If you have certain genetic issues, either hereditary or somatic, it can affect how well Pluvicto Works. You can ask for a somatic test before doing Pluvicto To find out if you’ve got Genetic changes Due to the cancer.

If you have BRCA2 or ATM It seems to work better. If you have RB1, PTEN or TP53 They are Pluvicto resistant.

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@jeffmarc Thank you for all your help my husbands doctor has prescribed the Darolutamide he is starting him at 300mg daily.
I cannot thank you enough.

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chippydoo | @chippydoo | Jun 9 5:28am

Congratulations on your 25 years! I never went to undetectable after RP and BCR and onto radiation after 2 years. Guessing at 87 you are considering quality of life or treatment? A family friend recently passed away a couple of weeks ago at 93 with PC. They discussed treatment which would have bought him a few weeks to a couple of months, and he chose to peacefully let go. The decisions we have to make in the late evening of our lives. I wish you peace and happiness as you walk through your choices and outcomes.

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fag | @fag | Jun 10 8:34am

I have just checked today the testosterone level: 729.35 and the psa level: down to 4.5 from the 5.2 of six months ago.

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fag | @fag | Jun 23 7:23am

I have shown all my tests to a team of oncologists plus radiologists and they told we to choose active monitoring without intervention. This means no stating ADT combined with AMRT💪😊
I presume that this is good news for now. The last psa check gave a value of about 4.5 ng/ml versus 5.10 last January

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charlesprestridge | @charlesprestridge | Jun 23 8:02am
In reply to @fag "I have shown all my tests to a team of oncologists plus radiologists and they told..." + (show)
Profile picture for fag @fag

I have shown all my tests to a team of oncologists plus radiologists and they told we to choose active monitoring without intervention. This means no stating ADT combined with AMRT💪😊
I presume that this is good news for now. The last psa check gave a value of about 4.5 ng/ml versus 5.10 last January

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@fag

Good news. Best Wishes

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prowler6b | @prowler6b | Jun 23 10:50am
In reply to @danchmo "I am 79 years old. I had a prostatectomy 13 years ago. Gleason score was 8...." + (show)
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I am 79 years old. I had a prostatectomy 13 years ago. Gleason score was 8. My PSA has been rising. Latest readings are: Jun 9, 2025 = .390, Dec 1, 2025 =.570, May 18, 2026 = .680 I had a PET Scan Jan 5, 2026 that did not show the location. Next PET Scan is scheduled for Jun 22, 2026. Not getting much info from Urologist.

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@danchmo
Your situation and details are exactly the same as mine! Everything! After two negative PSMA scans I have chosen wait on treatment and so far my ultrasensitive PSA levels have gone up and down so I’m willing to wait rather than risk more permanent side effects of treatments. Good Luck to you!

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fag | @fag | Jun 23 11:48am

What was the range of your PSA values and what was their average value? I understand that only very large jumps would require action! So good luck to us🙏

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diverjer | @diverjer | 2 days ago
In reply to @jeffmarc "@heavyphil I went in at 7 AM yesterday for the procedure. It was started at 9..." + (show)
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@heavyphil
I went in at 7 AM yesterday for the procedure. It was started at 9 AM and by 1230. I was heading home. The nurse in recovery said I woke up quicker than most people.

I have some pain from it, but I’ve been taking Tylenol since the first time I took one 5mg oxycodin yesterday afternoon. Slept pretty good last night, though I did have to get up to pee, which I don’t normally have to do. That is difficult, a little painful. This morning, I’m not feeling bad at all. Biggest problem is sitting down. They open you up in the perinium and stomach. The 2” stomach opening doesn’t bother me at all, The perinium opening makes it really hard to sit down without it hurting and burning, But it’s not very painful laying down. I may have a high threshold for pain, I don’t know how to compare it to other people.

The doctor running the ancan.org Speaking freely Meeting last night was impressed that I wasn’t in more pain. He said when he was done, he felt like he had razor blades in his body that were just cutting him up. The pain went on for weeks. I know the doctor I had do it was real experienced at it. My oncologist said she was a real artist. My results seem to be among the better results I’ve heard from people..

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@jeffmarc
Glad things went okay and not much pain. Didn't know you had any procedure scheduled. I thought you were clear of the PC. I need to get on here more and learn, I do have questions, but just kind of down and don't post or do much.
Again glad thing went okay, keep looking up.

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Jeff Marchi | @jeffmarc | 2 days ago
In reply to @diverjer "@jeffmarc Glad things went okay and not much pain. Didn't know you had any procedure scheduled...." + (show)
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@jeffmarc
Glad things went okay and not much pain. Didn't know you had any procedure scheduled. I thought you were clear of the PC. I need to get on here more and learn, I do have questions, but just kind of down and don't post or do much.
Again glad thing went okay, keep looking up.

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@diverjer
As I have mentioned a few times here, 12 years ago, I had radiation four years after my prostatectomy. Six years after radiation, I started having incontinence problems. They have just gotten worse in the six years since.

The answer to this problem, at this point in time, is the AUS, So I had one put in. Six week wait for my activation, and then hopefully it will make a major difference.

I hope your mood gets better. The first few years prostate cancer can be quite troublesome mentally. At some point, you realize that you’re not going to die soon so go back to living life. You really should consider joining a support group. They make you feel a lot better about what’s going on. Ancan.Org Has some really good groups, Sign up for one and attend and maybe it will give you some insight into what the possibilities are.

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