SHEEESSHHHH - oh well ... : (

Posted by surftohealth88 @surftohealth88, Apr 15 5:54pm

I just hate when my worry proves to be "correct" *sigh.

We got new uPSA results today and it is 0.05 : (((. PSA rose from 0.026 to 0.05 in 40 days so it is not an anomaly, something is going on.

Luckily we made app. with MO and our urologist last month since I knew that getting app. is measured in months, so we have consultations next week . We also contacted RO and are waiting for app..

My husband is in much better mental place than me (as always) so he is in action mode ("I probably have BCR so lets zap it !"), and I have to make myself get into that zone too - I mean, it is a must ... : /

Based on all that I read so far we decided to do IMRT treating the whole pelvic floor and nodes and add Orgovyx and Nubeqa for at least 6 mos. We hope that we will be able to get those particular meds since my husband is on Medicare.

All in all, I just wanted to give an update ( I wish it was positive one) and will let you know what doctors say next week.

Wishing everybody nice and relaxing day 🌼💗🙂

Interested in more discussions like this? Go to the Prostate Cancer Support Group.

mjp0512 | @mjp0512 | 4 days ago

In reply to @surftohealth88 "@dhasper Hi @dhasper - we had the first app. today with MO - it seems that..." + (show)

@surftohealth88 = Hi surf. Did they recommend an alternate to Nubeqa for ARPI or no pathway inhibitor at all?

heavyphil | @heavyphil | 4 days ago

In reply to @surftohealth88 "@dhasper Hi @dhasper - we had the first app. today with MO - it seems that..." + (show)

@surftohealth88 So he is going to start Orgovyx now?
Phil

dhasper | @dhasper | 4 days ago

In reply to @surftohealth88 "@dhasper Hi @dhasper - we had the first app. today with MO - it seems that..." + (show)

@surftohealth88 Thanks so much. I have my PSA and PSMA in a few hours and tomorrow meet with radiologist. I will keep you updated also.

surftohealth88 | @surftohealth88 | 3 days ago

In reply to @heavyphil "@surftohealth88 So he is going to start Orgovyx now? Phil" + (show)

@heavyphil
Huh - you would think !!!! Now all of the sudden we should wait some more - for one more PSA next month *sigh

You know all of that "personalized" approach for high risk patients is just an empty gibberish, it seems. Somebody somewhere decided that BCR is at 0.2 and that became magical number - it is "standard of care" and one can argue their little frighted heart out and point to papers that say that HR patients need to have extra early salvage (between 0.1 and 0.2 ) but : "we are still not even 0.1 " - I mean yes BUT, if this doubling time continues he will be 0.1 in May . Oh BUT - "uPSA doubling time has no real clinical value predicting real progression". Well, I must admit I did read that in papers, so I could not say anything there *mehhhh.

And than : "maybe this will just plateau at 0.05 and stay there".
(In my head I think yeah, for some other lucky person it is a possibility).

So, we wait May uPSA and go from there, unless tomorrow's zoom with RT guy gives us different prospective but I do not think so.

My personal opinion is that as time passes they are all somehow readjusting and re-evaluating real need for aggressive, early or intensified treatments - I think that they are now seeing that more is not better , especially with emergent of new advanced medications and modalities. 🤷‍♀️

For example, for long time trend was of having 6 mos ADT with sRT , now there is a new idea developing that for low risk patients ADT might not be necessary at all and that 6 mos it enough for high risk . ( https://www.urotoday.com/video-lectures/asco-gu-2026/video/5413-poseidon-meta-analysis-re-examines-the-role-of-adt-with-salvage-radiation-for-prostate-cancer-amar-kishan.html)

At the end - EVERY day some new study shows something new and even opposite of what was considered "the best" just last year.

So - "keep on swimming, keep on swimming 🎼" (Dory song from "Finding Nemo" ) lol

heavyphil | @heavyphil | 3 days ago

In reply to @surftohealth88 "@heavyphil Huh - you would think !!!! Now all of the sudden we should wait some..." + (show)

@surftohealth88

@heavyphil
Huh - you would think !!!! Now all of the sudden we should wait some more - for one more PSA next month *sigh

And than : "maybe this will just plateau at 0.05 and stay there".
(In my head I think yeah, for some other lucky person it is a possibility).

So, we wait May uPSA and go from there, unless tomorrow's zoom with RT guy gives us different prospective but I do not think so.

At the end - EVERY day some new study shows something new and even opposite of what was considered "the best" just last year.

So - "keep on swimming, keep on swimming 🎼" (Dory song from "Finding Nemo" ) lol

Jump to this post

@surftohealth88 HaHa - let’s just blow our fricken brains out, right?
And that article? It only talks about 10 yr overall ‘survival’ - not 10 yr overall DISEASE FREE survival…which is why I insisted on ADT.
I did not want to undergo SRT and have this fu**er return yet again; that would mean a lifetime of ADT (notwithstanding all the controversy and complications that go along with it).
So like our buddy @northoftheborder says, you really have to read between the lines and try to figure out what they’re NOT saying. Best,
Phil

catdude | @catdude | 3 days ago

In reply to @jeffmarc "@bearcat998 If you look at the biopsy after the surgery, you want to find out if..." + (show)

I had all clear margins after my RP and cancer came back a year and a half later

Jeff Marchi | @jeffmarc | 3 days ago

In reply to @catdude "I had all clear margins after my RP and cancer came back a year and a..." + (show)

@catdude
That is not all that unusual. Clear margins aren’t really enough. You need to see what is underlying in the prostate. What else did the biopsy of the prostate tissue show?

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

Then there’s the issue of dormant cells. Before prostate cancer is even detected PC sends out cells throughout the body to different tissue that become dormant and can’t be detected by any known technique. If there is stress on the body, those cells can reactivate, and your cancer can come back. Just another reason it returns.

northoftheborder | @northoftheborder | 3 days ago

I think the big challenge is that we're looking for more certainty than the science can support right now: when they tell us our future cancer prospects or which treatment might work best, it's like they're trying to do fine calligraphy with a 6 inch paint brush.

There is no test that can tell whether our cancer is actuallty gone. There is no way to know for sure how long ADT will help. There is no way to know whether Pluvicto will work. Etc etc.

The best they can do is look at broad population-based statistics and say "the middle of the bell curve for people who seem sort-of similar to you did is slightly better for treatment strategy X than treatment strategy Y." But of course, you might not be in the middle of the bell curve, so there's a lot of trial-and-error, monitoring, etc involved.

dhasper | @dhasper | 2 days ago

In reply to @surftohealth88 "@heavyphil 😂💗🤗 ahahaaaa, OK, you made me laugh now - thanks bud. : )))" + (show)

@surftohealth88 Surf just posted a summary of my consult at Mayo today.

melvinw | @melvinw | 2 days ago

In reply to @surftohealth88 "@heavyphil Huh - you would think !!!! Now all of the sudden we should wait some..." + (show)

@surftohealth88

@heavyphil
Huh - you would think !!!! Now all of the sudden we should wait some more - for one more PSA next month *sigh

And than : "maybe this will just plateau at 0.05 and stay there".
(In my head I think yeah, for some other lucky person it is a possibility).

So, we wait May uPSA and go from there, unless tomorrow's zoom with RT guy gives us different prospective but I do not think so.

At the end - EVERY day some new study shows something new and even opposite of what was considered "the best" just last year.

So - "keep on swimming, keep on swimming 🎼" (Dory song from "Finding Nemo" ) lol

Jump to this post

@surftohealth88 Thanks for sharing that video lecture. It’s interesting to note the Dr. Adam Kibel (Harvard) does not treat post-RP, salvage RT patients with ADT if their PSA is < 0.5 (https://youtu.be/JxO6uRM-XiM). The study discussed in the urotoday video appears to bear that out. I think the biggest concern for OS is cardiovascular disease, which is a well known risk factor associated with ADT.

Trying to find the sweet spot between undertreatment and overtreatment, especially with relapses, is not easy (well, actually, it’s damn stressful). And as you noted, new research keeps changing the playing field. Last summer two oncologists were pushing short term ADT at me real hard along with IMRT, citing the SPPORT trial. I was dubious, especially given that my PSA was 0.11 (or 0.094 with uPSA testing) and there was no scan evidence for distant mets. This latest study appears to bear out my skepticism of ADT benefits outweighing risks, in my case. Also, I have a family history of heart disease (but not prostate cancer). I have a heart murmur and aortic sclerosis and am in my mid 70s, so I factored that into my decision to steer away from ADT with RT. You really need to factor your personal circumstances into decision making, and then hope that you can find a doc that will work with you.

Yup, I expect that between AI and mRNA research and more that the recommended protocols for treatment five years from now may look radically different.

But in the meantime, we keep swimming, or least keep our heads above water. Sheeesh, indeed.

Hang in,
M