Dazed and Confused

"In the neoadjuvant setting, Kato et al. explored the impact of neoadjuvant androgen deprivation therapy (ADT) in high-risk PCa patients with concurrent IDC-P [43]. They retrospectively analyzed 145 patients post-RP, stratifying them into three groups: IDC-P-negative, IDC-P-positive with disappearance post-ADT, and IDC-P-positive with persistence post-ADT. Interestingly, around 28% of IDC-P-positive cases responded to ADT, exhibiting the complete disappearance of IDC-P at RP and demonstrating comparable overall survival to IDC-P-negative cases. Conversely, the remaining 72% with persistent IDC-P showed the worst prognosis, with a hazard ratio of 3.84 compared to IDC-P-negative cases. "

I really do not understand why all of the findings and research mean nothing until they become "standard of care" which may happen never or 15 years later when it is meaningless for patients that are having a problem NOW .

The whole process of PC treatment is "up to a patient" anyways, so why those patients do not have a right to try some individualized approach with signing non liability papers for doctors ?! Why, for example, my husband was never informed of neoadjuvant approach for IDC ? Adding ADT before treatment is definitely not unheard of approach nor controversial in any shape or form . Here would be no harm done and he would possibly even have his IDC completely disappear before RP !

The more I learn about what could have been done for my husband and was not , the more depressing it is becoming. It is one thing when one just has a bad luck end ends with difficult situation and the whole another level of unfortunate when that situation was preventable or helped in significant way but was not 😢.

I agree 100%. My biopsy mentioned IDC-P back in March but since the tumor was still enclosed with the prostate and Gleason 7 (3-4) they kicked the can down the road with delays about insurance etc. now post RARP, I'm a p3Ta and IDC-P. had i known the significance of this i would have demanded a more aggressive treatment back in March (5 months ago). I learned the hard way (quite probably too late) that the PC world is not very forthcoming with info, and a sense of urgency is not their strong suit.

I don’t want to come across as the guy saying “don’t worry,” because believe me, I am extremely worried. But I think there are a few things to keep in mind with the Kato study. It was done on men who had surgery between 1991 and 2005 — that’s a very long time ago in prostate cancer terms. A lot of the tools we take for granted now simply didn’t exist back then: ultrasensitive PSA testing, PSMA PET imaging, and protocols for very early salvage radiation. Salvage in that era often meant “late salvage,” which we now know is a different story altogether.

It’s also a retrospective analysis, so who got how much ADT, who got follow-up, and how salvage was timed weren’t standardized. That makes the outcomes harder to interpret. Add in the fact that randomized controlled trials since then (RADICALS, GETUG, RAVES) have shown early salvage can match adjuvant without the same toxicity, and the picture looks more complicated.

None of that means IDC or cribriform patterns aren’t scary — they absolutely are. For me, the takeaway isn’t to relax, but to push for heightened vigilance: ultrasensitive PSA every three months, acting on even small rises, and making sure Decipher and imaging are part of the discussion. I don’t want to minimize anyone’s worry — I share it — but I think the real battle is making sure we don’t miss our window with the tools and evidence we have now.

Yes, but when you "miss the window" TWICE due to doctor's nonchalance, there is no warranty that it will not happen the third time ? We insisted from the beginning on "vigilant" approach and were dismissed. Even now we are dismissed - tried to make app with oncologist and were not able to !

No matter if the study is old or new- IDC is IDC and cribriform is cribriform and always a bad prognostic factor across all stages, period. No vigilance is going to make it less. The only time that some change in progression of disease can be made is very early intervention before cells become cribriform and/or IDC and if RP is expertly performed with negative margins while PC is fully contained in a gland and with small tumor burden.

Knowing what I know now about IDC and cribriform, I think that it is unconscionable to tell a patient with those pathology features to "take their time" and "think about a treatment".

Unfortunately, I think a lot of cribriform/IDC may just be missed at many biopsies.
That said, my personal feeling is that PCa should be hit early - and hard.
If I could turn back the clock I would have done adjuvant radiation with ADT after surgery. My prostate was brimming with cancer and had I known that there was a ‘tiny break’ in the capsule I would have insisted on more treatment.
But my surgeon was a ‘superstar’ in the prostate world and he wanted the ‘W’ all for himself.
I think many surgeons see adjunctive treatment as a failure somehow. This is why multiple opinions across different areas of treatment - surgical, radiological, medical - are so important. They give YOU all the different ways of looking at your treatment and allow you to make a well informed decision.
Phil

Great insight. I find it hard to get that true interdisciplinary approach unless you’re at a Cancer Center of Excellence. Being a disabled veteran I don’t have that option. I’m being treated by a local Urological Oncologist (surgeon) who outsources other treatment options. So i will be basically “punted” to the radiologist in a different office/ side of town. And haven’t fend for myself battling referral/consult approval etc. very frustrating

I am so sorry that you too have to go through uncoordinated care 😔 I do not know if this will make you feel better but my husband is having "care" at CCE center (UCSF), and care coordination so far is far from stellar.

We can not even make appointment with oncologist because my husband does not have metastases (????) . High risk patent, gleason 9, cribriform, IDC , EPE and perineural invasion inside the gland and iffy margin is denied access to oncologist ! 😖 Urologist is supposed to follow his case at CC of Excellence ???

That is TOTAL BS!! I guess MO is considered the ‘last stop’? I would suggest a consult with an RO at the same hospital - try to get a younger member of the staff since they are much more current on ADT drugs/combos than their older counterparts.
If you can’t even get this referral, just get the hell out and go somewhere else. The surgery is behind you and you have all the patho you need to present your case to a different hospital.

Thanks. I’ve consulted a younger RO at MD Anderson in Houston. He said it’s SOP to wait 10 weeks before pulling fresh PS. That with the results of the Decipher will help. I’m pushing for early intervention (adjuvant?) RT and ADT.

Hello - Sorry to hear of your pT3a status. I am a pT3b status, and I am in the same boat. These urologists always seem to have urgency to get you to the surgical table for the radical prostatectomy, but once they have the surigcal pathology report in hand, they take a "let's wait and see" mentality/approach.
I am less luck than you: I do have surgical margins (occurs in only 10-20% of cases..."lucky me"). I have EPE of course, left seminal vesicle invasion, and cribriform glands. At my 11-day post-op catheter removal, my urologist said: "it seems that despite your biopsied moderate risk 3+4 = 7 Gleason score, you have a fairly aggressive cancer, so we'll need to 'talk about' radiation in your next appointment (3 months later). I just had that 3-month first follow-up without discussion of radiation. He seemed pleased and focused on the fact that I had a 0.1 ng/ml ("zero") PSA, and that we'll 'get another PSA' in three months to 'see how I am doing'." This guy is no hack. He is part of a large urology group working in a 375-bed, highly regarded medical center in my area (southern California). I had the single-incision DaVinci Robotic-Assisted RP, but despite all of those confidence-building features of physician, facility, and surgical method, he has gone into "watch and wait" mode to see what my next PSA will be in mid-October, despite being a definitive pT3b.
If I had not had the EPE, surgical margins, Cribriform glands, and left seminal vesicle invasion, I'd say "OK...let's wait", but I am sitting here thinking "what am I missing here that makes him want to wait another three months... is he angry with me because I ask LOT of questions - like "what went wrong with you using the DaVinci method that caused surgical margins and cancerous tissue to be left in my body (he had built up the DaVinci method as state of the art perfection)?" And..."with it being a bloody mess during surgery, how can you be sure that both of my neurovascular bundles were in fact preserved (when discussing my severe sexual ED)?" I got blank stares with closed lip smiles on both of those. He was likely thinking: "F-off for asking me such pointed and accountability-based questions."
In retrospect, I often think that with what this has done to me with incontinence and ending my sex life, that I should have done like my dad and maternal grandfather who lived to 99 years and 96 years, respectively, WITH prostate cancer...neither had a prostatectomy. I had the surgery, and might not live another 5-10 years based on my pT3b status that comes with a high recurrence rate. Frustrating.