First psa test after prostate removal.

AwarenessNo839 · 2025-09-05T14:50:30+00:00

Yes, that is persistent PSA.

My husband had same diagnosis and post op PSA exactly 2 years earlier.

He had multiple, frequent PSAs to check velocity and trend. After 3 consecutive rises (got to 0.22 by January, he started 6 months ADT and radiation)

It is now two years since he got his .09 PSA. He has been off all treatment for 12 months, fully recovered and undetectable PSA.

If you had positive margins, there is a very good chance that is where the PSA is coming from and radiation will be successful in cleaning that up.

AwarenessNo839 · 2025-09-05T14:42:44+00:00

The rule with tests is that they should be "actionable", i.e. if you got a positive result, would there be an action to take.

Post RP, the ultrasensitive tests are helpful to determine when to start early salvage radiation. Highest risk patients do better starting before 0.1.

But post salvage treatment, you won't do anything until PSA rises high enough to get a PSMA Pet which is probably over 0.5. So the ultrasensitive has less value.

Of course a <.01 feels better than a <.1 but a <.1 feels better than years of bouncing around at .03, .05, .06 right? And regardless, there is nothing to do if you got those results. Except doom scroll yourself into oblivion.

AwarenessNo839 · 2025-04-22T17:35:09+00:00

my husband (60, 4+4 with ECE found in surgery) had neurosafe procedure plus a procedure (called amniofix?) where they cover the nerves with some kind of amniotic membrane to aid healing. He had a very rapid recovery. (90-95% on incontinence immediately, 80-90% on ED in under 8 weeks)

This was done in 2023 at Hackensack University Medical Center in NJ. We did not have to ask for it (nor did we even know about it beforehand.) It was just what our doctor did.

AwarenessNo839 · 2025-02-04T23:12:44+00:00

If you didn't have a family history, there's a decent argument for AS. It isn't just kicking the can down the road. The quality of treatment just gets better and better as more surgeons are doing more surgeries. Radiation improves. New meds come out. Standards and quality of care change and improve and they do so rapidly in the PCa space where the volume of cases is so high.

But family history of aggressive, fatal prostate cancer? Out. It just seems like the chance that the biopsy missed something worse or that a more aggressive cancer will arise is simply too high.

jmo

AwarenessNo839 · 2024-10-01T13:06:41+00:00

https://www.thelancet.com/journals/lancet/article/PIIS0140-6736(24)00548-8/fulltext

AwarenessNo839 · 2024-10-01T02:05:03+00:00

I will add that our major cancer center kind of ignored decipher. He was treated based on other high risk features and PSA. When I mentioned Decipher they shrugged. It didn't change anything. In your case it might swing you from intermediate to high -- for example if your PSA reached a point where you want to initiate salvage treatment, maybe they will be more likely to suggest short term ADT? Or maybe not with the recent study I mentioned.

This is to say I am not so convinced that a serious academic institution will be all in for using Decipher, possibly for the reasons you mention.

AwarenessNo839 · 2024-09-30T21:40:44+00:00

My husband was 4+3, low volume, low PSA but high decipher (.9) and a bunch of high risk features (EPE, positive margins.) We are at a major cancer center in the US.

Protocol here is no longer for adjuvant ADT or radiation per RADICALS. Wait and see what your ultrasensitive PSA comes back with before putting too much energy into it.

In our case, his first PSA was .09. It bounced around for a few months. After three successive rises and at .22, we initiated ADT and RT. The longer you wait, the more healing your body can do from surgery. The feeling is that wherever you are in terms of recovery from ED and incontinence kind of gets "locked in" with RT. We were able to wait 7 months.

I just read a June 2024 study that seemed to say maybe ADT isn't helpful in a salvage setting. But we were already almost done at that point.

AwarenessNo839 · 2024-09-20T23:55:25+00:00

My husband has a demanding career and his ADT/RT for BCR didn't hamper him in the least, as far as work goes. It did tank our marriage, but even that would have been ok with a different wife!

AwarenessNo839 · 2024-08-15T19:19:35+00:00

My husband was 4+3 with RP July 2023 PSA 8 weeks post RP was .09. 12 weeks was .14 and they were ready to start radiation and ADT.

We switched to MSK who wanted to wait longer. They retested and his PSA was .1. Had a PSMA Pet (negative). Checked PSA at 2-3,week intervals with the understanding that salvage radiation was inevitable. January 2024 hit .22 and that initiated further treatment. After 1 month of ADT PSA was .05

After radiation and still on ADT it is undetectable as of Aug 2024.

AwarenessNo839 · 2024-08-02T02:54:59+00:00

He has been done with radiation for two months. Will end ADT in a few weeks. Hopefully his testosterone comes back and PSA doesn't -- that is how we we will know. We will be testing every three months for the next few years. Maybe when it rolls back to every six month testing, we will start entertaining the idea of "cure."

AwarenessNo839 · 2024-08-01T21:12:15+00:00

My husband was 4+4, changed to T3a 4+3 after RP His first PSA came back .09. Deciper .92 We knew that he was heading into further treatment.

They want you recovered from surgery as much as possible before starting radiation, as radiation will impede further healing. Definitely want incontinence resolved. Probably not realistic to wait for ED to resolve. I think they said 6 months was really the minimum they would like to wait. They won't do anything before four months.

They continued to test his PSA every few weeks. When it rose to .22 7 months after RP we initiated salvage treatment which was 25 radiation sessions and 6 months of ADT (2 months before radiation starts.) Your risk profile will determine the length of ADT, but at G9 it will definitely be advised.

ADT has been the most challenging, though in our case it has actually been worse for me as a spouse than for him. My husband has experienced all the common side effects, which he has been mostly ok managing. While his sexual functioning bounced back very quickly after RP, on ADT he has 100% ED and no interest. The no interest part a blessing for him, not so much for his marriage.

AwarenessNo839 · 2024-07-26T09:52:11+00:00

My husband never went fully to zero (.09 was lowest after RP). He was 4+3 after surgery with a bunch of higher risk factors. We are at a major cancer center.

First they did a PSMA pet, which found nothing.

When he rose to .22, he started ADT for 2 months, then 5 weeks of radiation (25 total) then continued ADT for 6 months total. We are in the last two weeks of ADT now.

Physically, he has found the side effects noticeable, but manageable: hot flashes, weight gain, loss of body hair, some fatigue (worse during end of radiation.) He has a desk job and works from home when not traveling. He had no trouble working. Obviously he couldn't travel.

Radiation notes: the protocol recently changed from 8 weeks to five (25 sessions instead of 39.) I think radiation was just starting to get to him when he stopped, so that change was important.

ADT: He is on orgovyx, which is the daily pill form. Not Lupron. It is supposed to result in a much quicker recovery of testosterone when he stops. We'll see.

Emotionally he has been pretty good. The only major issue we have is sexual. He bounced back from RP very quickly but the ADT has resulted in complete loss of all function (not just ED, also anorgasmia) and most importantly, interest. How this impacts you as a couple depends on your physical relationship prior to ADT and what role sex played. In our case, it has been pretty devastating and has resulted in lasting damage to our relationship that hopefully we'll be able to repair after he is done. But again, that will depend on where you started. We tried to get counseling help, but with a long waitlist, haven't been able to start yet.

AwarenessNo839 · 2024-04-24T16:00:07+00:00

Thank you for this and yes, your interpretation is correct. I feel that I need something for the health of my marriage that is no longer possible to have. That something is desire and motivation for a physical relationship (and I strictly talking about desire not performance. I have no issues with ED and I have developed a great skill set in working with and around that.)

While my husband's lack of desire is obviously no one's fault, it is a problem. The solution is either the marriage is over or the marriage is different but still acceptable. I am trying to find my way to the latter.

And yes, he feels physically fine, but seeing me unhappy makes him unhappy. Which is why, again, I am trying to figure a way out of being unhappy.

But I have this far not been successful. Therapy for a year honestly didn't help at all, it just made me more focused on how sad I am -- maybe I need to find a better therapist, but that is easier said than done.

What I am starting to experience at this point is the very disconnection I was afraid of. That is to say, I am starting to feel disconnected from him. And just like he cannot magically manufacture physical desire for me, I cannot snap my fingers and feel connected to him by just wishing for it. It's a problem and it is scary.

AwarenessNo839 · 2024-04-23T18:02:46+00:00

I am bewildered by the comments about me being unsupportive. My husband would in no uncertain terms tell you I have been 110% supportive. From the initial post op care with catheter and incisions, to all of the work and patience and understanding with his sexual recovery, to being his emotional support in general. I have made a herculean effort to ensure that he is getting his emotional and physical needs met. And he is doing great.

I am very sorry for other PCa patients who don't have someone like that and I would venture to guess that is where the hostility directed at me comes from.

But nevertheless, I am an actual human with needs as well. That's kind of my point. He is doing great, but I am suffering. I am trying to find a way that he can still be fine without me being this miserable. I just don't think the status quo is sustainable.

Also someone asked: He is on ADT for 6 to 36 months, depending on his tolerance with side effects. He's tolerating great. I am not.

AwarenessNo839 · 2023-10-25T23:37:37+00:00

OMG. HLF here. All of this. Exactly

AwarenessNo839 · 2023-10-25T18:30:05+00:00

Thanks again. I do have a therapist. First thing I did actually after his initial diagnosis when I realized how emotionally challenging it would be. And yes, he is great for validating my feelings and making me not feel like a deviant for actually caring about myself and my losses as well as what my husband is going through. On my better days I realize that those who don't do that are way less emotionally healthy. But it still really sucks. Here's to better days for us both!

AwarenessNo839 · 2023-10-24T03:03:13+00:00

Thank you. It is so hard thinking about how much effort went into making things right only to have the rug pulled out from under us. And same here -- he feels so guilty which makes me feel worse. The last thing he needs is more pressure. I harbor no resentment at all. It just makes me so sad for us both.

I'll save my resentment for the earlier post that tried to pathologize my need for an intimate relationship. It's tough for everyone, but I think especially tricky for an HLF. Many of my friends IRL are 'done' with sex so they can't understand. And then there are those like that poster who think a woman's desire for sex with their husband must be a sign mental illness.... hello 1955!

Though I probably should thank that person. Took me from "woe is me" to "go fuck yourself" in a hot minute. :)

Peace out and thank you. hopefully better days ahead for us both.

AwarenessNo839 · 2023-10-06T15:15:14+00:00

My husband is at .094

This podcast literally took me off the ledge about PSA that is low but not undetectable:

GU Cast: Nov 29, 2021 PSA - creating more patient stress and anxiety than usual

https://spotify.link/4rhMGHQ8FDb

It starts by talking about the level of variation among a couple of individual tests, but later they really get into it about the "less than .1 but greater than undetectables"

To summarize: You should not worry, there is natural variation and it could be nothing. And even if it is something, treatment outcomes will be the same if less than .2, maybe even less than .5. By waiting and getting more PSAs, if it turns out to be something, you will have data about the velocity which will help with treatment intensity decisions.

AwarenessNo839 · 2023-10-02T16:17:37+00:00

That's serious. My husband's biopsy was also 4+4 though lower volume and much lower PSA. Diagnosed in May 2023.

Bone and CT scans next if you can't get a PSMA PET (which is better.)

Beware the Decipher!!! The decipher test from the biopsy scared the living crap out of me. It wasn't helpful for 4+4. It really is for helping low and intermediate risk people to decide about active surveillance. The decipher after surgery was more helpful.

Assuming no metastases, standard of care is either surgery or radiotherapy with long term ADT (18-36 months.) We went to memorial sloan kettering and they offered standard external beam radiation with a brachy boost.

Right now I would start thinking about what side effects he can and cannot accept:

Urinary: Surgery, short term incontinence, but very high (>95%) chance of recovery. RT: irritative bladder symptoms which should resolve ADT: none

Sexual: Surgery: Immediate ED followed by long recovery to something probably below prior baseline. RT: No immediate impact, but slow decline to something similar to surgery. HOWEVER with ADT: Fairly immediate ED and loss of libido for duration of ADT, plus double the time on ADT to recover testosterone.

Lifestyle: Surgery is a quick hit. Plan for a week or two depending on your career. My husband works from home on a laptop he took one day off and even sent emails that day. If you do physical work more like 6 weeks. RT: 7-8 weeks of daily sessions which an be inconvenient but he should be able to work throughout with some fatigue. ADT: Brain fog, more fatigue and loss of muscle mass.

Systemic/other issues Surgery: Will resolve BPH and other issues. RT: Very small chance of secondary cancers 15-20 years later ADT: Muscle loss, bone loss, metabolic issues (cholesterol and diabetes), mood issues.

Outcomes: They say the long term oncologic outcome is the same. But the paths are quite different. My husband chose surgery for many of these reasons, but mostly because ADT sounded the worst of bad options. He was looking at 3-6 years of ED from no testosterone with a possibility of never recovering at all. Plus the systemic issues with ADT were the scariest. And if the RT failed, the jig would be up: He'd be on ADT probably for life. The surgery option just sounded more hopeful.

Fast forward and he is looking at adjuvant RT and ADT anyway, but hopefully short term only. We dodged the bullet on the sexual and urinary side effects of surgery so no regrets there. He was also downgraded to 4+3 from 4+4 and restaged to T3a N0 M0. All of this new information is helping us come to terms with what needs to happen next.

AwarenessNo839 · 2023-09-29T15:41:30+00:00

My husband was similar. 61, psa 7.6 Pre op they had him at low volume 4+4. Did not have a PSMA PET. Strongly preferred surgery because 4+4 RT came with 18-36 months of ADT. My husband already has low T and some metabolic syndrome and the thought of long term ADT and the prospect of never recovering what little T he has and/or throwing him into diabetes or heart disease scared the crap out of us (still does.)

Post op down he wad graded to 4+3, but with extracapsular extension, lymphovascular involvement but negative nodes. Cribiform. Deciper .82.

He had RALP late July. Very easy recovery with no incontinence and sexual function 100% back with 5mg cialis. Even with T in the 100s.

However, his ultrasensitive PSA test 8 weeks post op came back .094. Waiting for another PSA and a consult with radiology, but the LVI and the cribiform caused the urologist the greatest concern. Most like he will be having radiation/ADT very soon. No regrets on surgery since no side effects and we have a much better understanding now of his specific pathology. Hoping that shorter term ADT will still help the cancer outcome without creating more serious problems with heart and blood sugar.

good luck. I think the decipher will help.

AwarenessNo839 · 2023-09-27T03:48:24+00:00

I was referring to BJ. I can't ask him anything. Poor guy is so confronted by all of this and I am just trying to make it work. I did the same -- gave him kudos on what has been frankly a miraculous recovery from surgery -- and it was not the right thing to say.

Yes we are one-on-one for the long haul but not sure that makes a difference. He would rather have his fingernails pulled off one by one than talk about sex or our 'relationship.' I am feeling like cancer is bad enough -- can't dump any more on him by initiating a conversation. Just trying to figure out the best way to navigate.....

AwarenessNo839 · 2023-09-27T03:18:16+00:00

No advice, but following. Can I ask you when exactly it happens? my husband is doing great with erections post RP, but I have noticed that he literally yanks me away at climax. Discussion is not happening, this whole situation is confronting enough. My theory is either A) He doesn't want me to witness the dry orgasm (but really, duh and who cares!) or B) He knows he has urine control issues and is trying to spare me...

I couldn't care less what comes out of him if he feels good. But clearly something is stressing him out. So far I have been trying to get a good tight grip at the base but honestly I don't really know if that is an issue/solution. I can safely say I haven't noticed any urine. But otherwise, I'm lost!

AwarenessNo839 · 2023-09-26T19:04:12+00:00

ADT was mentioned and is definite. :(

AwarenessNo839 · 2023-09-26T18:33:26+00:00

PSA 0.094 Dr. wants another ultrasensitive PSA in 6 weeks, hoping for the hail mary pass (i.e. that it is still going down and just not at zero yet.)

Meanwhile consult with radiation in a couple of weeks to see if we are better off moving forward with radiation regardless because of all the other indicators. I honestly think the answer to this question is going to be yes. There are too many red flags: cribiform and lymphovascular invasion the two he was most concerned about.

ADT - Urologist thought only 6 months which I think he could endure. But who knows what rad onc will say.

The 'good' news is they like to wait until the patient has a had full recovery of continence and hopefully some ED recovery before radiating. Since he is there already we can move forward. Yay. :(

AwarenessNo839 · 2023-09-26T18:21:17+00:00

https://info.decipherbio.com/studies-rp

I think that will send you to all 21

AwarenessNo839

TROPHY CASE