Second Opinion????? Recurrence Post RALP

@dhasper
Oh yes : (((, tell me about it - with all that I know I sometimes feel paralyzed and unable to reason : ((( , literary like a rabbit frozen and staring at snake like an idiot.

There were times when a well wishing member would tell me "well it was expected" OR " you know by now what to do" and I would be whimpering and saying to myself "no I don't know what to do" and "I should have expected it but I hoped for another result since I HAD TO : ((((" , or I would just fall apart 😢.

So yes - it helps a great deal to hear confirmation or reminder or explanation AGAIN and I am glad if I "reminded" you to push for what you want or need < 3.

@surftohealth88
The thing is, it’s not just IDC-P when you add cribriform. Newer studies say cribriform Is best treated with radiation, Older studies said RP. If you do RP because of IDC-P It’s not ideal for the cribriform problem.

I wish there was a simple answer to this, but I’ve not seen one yet.

It could just be treating people with RT after RP then putting them on the right drugs is gonna make them live as long as others

@jeffmarc
The thing is - "they" will probably live as long as others if you look at OS. There are studies that show that people with aggressive cancer who did not do ANYTHING after RP lived in average 13 years.

For IDC the difference was about 1.5 years in mortality at 15 years and that is average which means that some "others" died earlier than IDC and other way around.

Cribriform - study results change as often as weather lately lol.
I am sure that the truth is somewhere in between if you ask me. But again, if you look closely at the "end of game" results (actual number of people and not %), differences are in 2% up or down and so forth.

In all of this hoopla, the most important thing for any stage or any type is to stay on top of situation and act accordingly. All the rest is not guaranteed in any direction for gliason 7 nor gliason 9. Chances are chances - can go either way, and of course as with anything else pure luck (or the lack of it) can have major effect : /.

@dhasper
I just wish there was an answer from the medical community about this combination of aggressive issues.

When somebody has RP and then has BCR What’s next is based on the original aggressiveness of their cancer. With a Gleason nine and a combination of other issues 24 to 36 months of ADT is called for frequently. They would also want an ARPI included. With a 4+3 24 months might make more sense. You really need to speak to an Oncologist, Preferably a GU oncologist to get this treated Optimally. If you were to come to an ancan.org Meeting they would recommend you be on ADT plus an ARSI, based on what the Sstandard of care calls for in this situation.

The thing is this reoccurrence is happening pretty quickly. While .17 doesn’t sound real high. It came very Shortly after surgery. You could wait and see if the PSA continues to rise. I would want monthly tests at this point. Considering that they want you to have SRT at .2, if you can’t see anything on the PET scan. You’re probably gonna hit that in another month or two and SRT makes the most sense, it can hit the area where the IDC-P and cribriform was centered, the prostate bed.

I might be a good idea to get a second opinion. Having more than one doctor look at this can give you some comfort that the right thing is being done.

@dhasper
I think KUMC thought I was being a pest or at least asking too many questions. I was actually being very nice- but not feeling nice at all. But I held my temper! Still didn't get answers for weeks and sometimes not at all. I had the same thought do it now on getting the PR. Finely went someplace else that is not nationally recognized, but does treat me well and will actually talk to me. I do know him as he has treated me for BPH. Also, know that he has done thousands of RARP with good results.
I found it hard to find that line of not being a pest and making them mad while getting answers. It seems sometimes these big clinics think I should just listen and do what they say and not ask questions. I am not questing their skills, I just want to know facts and options.

@jeffmarc

Jeff - do you have any links to those recommendations (any study or NCCN paper or similar) ?

Thanks so much in advance. : )

@diverjer
I completely understand you and yes, we have to be in place where we feel heard and where we get answers. Especially because PC is usually chronic condition and requires very often follow up therapies, so if we can not get basic information and respect with simple case scenario, what will be in the future ?!
We got our answers and appointments but I am still upset that it needed extra effort and that all took so much time. *sigh

@surftohealth88

You could come to an ancan.org Meeting, There’s one next Monday at 5pm. Disclose the information about your case and ask The people there for recommendations. There’s almost always three or more doctors in the meetings. Rick, who runs it has a huge database of information. That’s where I hear about it but the following concurs.

For biochemical recurrence (BCR)—defined as PSA
0.2 ng/mL after radical prostatectomy—the primary recommendation is usually salvage radiation therapy (SRT) to the prostate bed, often combined with androgen deprivation therapy (ADT) for high-risk cases. Modern guidelines emphasize using ADT, specifically in combination with enzalutamide or other anti-androgens, based on PSA kinetics and risk factors.
National Institutes of Health (.gov)

An article referenced by this
https://pmc.ncbi.nlm.nih.gov/articles/PMC11096125/.

@dhasper It RARELY shows up on PET at such low levels, so I wouldn’t use that as your yardstick.
Rising PSA - and the velocity of it - is a much better indicator of cancer growth.
With your pathological features, recurrence is more probable so it is not far fetched to think it might be back.
I insisted on ADT for my SRT and it was not nearly as bad (for ME) as it is portrayed. Lobby for Orgovyx - it is light years ahead of Lupron.
I did 6 months ADT but it’s up to your RO how long you should be on it; however, some recent studies indicate that longer than 6 months (in most cases not genetically mediated) offers no benefit…Best,
Phil

If I were you, I would:
> Get another PSA to make sure there was no screwup with the .17; if accurate a retest may already have you at .20 (std. BCR with RP). Do not need ultra-sensitive 2 decimals are enough.
> Forget Decipher; irrelevant at this point; you know your high risk with BCR at 7 mths out
> I would not do AS. I would start salvage radiation ASAP since it shows better results when started sooner. Also, ADT concurrent and post radiation for at least 6 months.
> Was PMSA PET given pre-treatment (should have been with 80% #4). At low PSA levels it misses a lot. Only point is probably to confirm no distal metastasis which should have already been done before your surgery. The prostate bed may or may not light up. Should not delay treatment decision. Should expect this to be negative. I would give this a pass.
> Is the MRI to decide how wide the salvage field of treatment should be? Should be able to schedule and get results in less than 2 weeks. If this is just to help decide AS vs. treatment I would pass on the MRI also.
> Was PSA .10 your nadir? Should have been lower with RP; If nadir the cancer probably was already out of the surgery field at time of RP so this may be more of a cleanup vs. BCR.
> Should probably combine radiation with ADT (already discussed what to have/avoid). Need to wait on PET to start ADT. That is a reason PET may have negative value. As Phil said it cannot see much at low PSA levels. Some centers will not perform PSMA post RP with PSA below 0.5.