I'm Back.....but I never really left

Hey guys,

Bummed out. Lost my < after 4+ years post SRT/ADT (8+ years post RP). I now sit at .1. I know from all your posts that it's nothing to immediately worry about as nothing will be found on scans until this number gets significantly higher. However, it's definitely a gut-punch. I only tested post SRT to .1, as I did not want to get caught up in tracking 3 decimal numbers when I couldn't actually do anything about it. I was a 4+3 post surgery, so I'm hoping that it's the "3" cells that are acting up now, not those nasty "4"'s. I assume I will now test every 3 months from this point forward.

So, where do I go from here? I guess first thing is find a good Prostate Oncologist in the Philly metro area (I'm open to suggestions). I want to get on his/her radar and have someone lined up for when the trigger needs to be pulled for additional treatment is required.

So, one question I have for those who may have been in a similar situation......did any of you just monitor this type of situation (PSA Testing) for a long time before you had to pull the trigger on additional treatment? I know all of our situations are unique and how one person responds is not necessarily how another will respond. I guess I'm looking (hoping) for a little more time without additional (ADT) treatment.

Like my title says, I am back, but I have not really left. I monitor posts in this Forum a couple times/week. I see many familiar names and am thankful that so many of you offer your opinions, advice, and personal stories to so many other forum members.

Thanks in advance for any advice and I hope all are coping well with your current situation.

J
------------------------------------------------------------------------------------------------------------

Age at Dx: 54 (DOB: 01/28/62) 62 now.

08/31/15: PSA 2.5;
01/01/16: Urinary Frequency;
02/05/16: DRE Pos Nodule;
02/22/16: Biopsy;
02/26/16: Dx: 7-12 positive; (5) 3+3=6; (1) 3+4=7; (1) 4+3=7; T2B;
03/11/16: Bone Scan Neg;
03/23/16: CT Scan Neg;
03/31/16: Surgery Consult UPENN;
04/08/16: RT Consult/2nd Op Fox Chase CC upgrade to 4+4;
04/14/16: 3TMRI "organ confined", EPE-, SV-, LN-;
06/01/16: DaVinci @ UPENN (Dr. D. Lee);
06/08/16: Catheter Out;
06/08/16: Post-Op Path: EPE+;Marg +;SV-;LN-;G7(4+3) (G4 80% - G3 20%);tumor vol 25%;T3a;
07/01/16: Start 5mg Daily Cialis, 20mg once a week on Friday's;
07/06/16: Decipher: 0.56 (Average Risk);5 Year Metastasis 7.6%;10 Year PCa Specific Mortality 6.9%;
08/01/16: Penile rehab started (Pump);
01/30/17: Decipher GRID PORTOS: Avg ADT Response (21%);Avg Docetaxel Sensitivity (56%); Lower RT Response (45%);Avg Dasatinib sensitivity (38%);High Genomic Gleason Grade (81%); High Metastasis Risk (70%);High Tumor Cell Proliferation (82%);Avg AR Activity (56%)];
09/26/18: 99% continence (some stress every now and then); ED no issue (5 mg Cialis/Day);

Post-op/Post SRT uPSA/PSA History:

08/31/16: uPSA <.006; (3 months);
12/01/16: uPSA <.014; (6 months);
03/01/17: uPSA <.006; (9 months);
06/01/17: uPSA <.006; (12 months);
09/01/17: uPSA <.006; (15 months);
12/01/17: uPSA .007; (18 months);
03/01/18: uPSA .010; (21 months);
06/22/18: uPSA .015; (25 months);
09/21/18: uPSA .018; (28 months);
12/21/18: uPSA .035; (31 months);
03/22/19: uPSA .044; (34 months);
06/21/19: uPSA .055; (37 months);
08/13/19: uPSA .071; (39 months); 6 months ADT
09/11/19: SRT begins
11/11/19: SRT end 37 sessions 200gy (total 6800 gy);
02/13/19: uPSA <.006, end ADT.
All PSA tests since <.1
06/03/24: PSA .1

Hey JNF, can't say its good to be back! Lol

I was treated (SRT) at Fox Chase. But right around that time, they were being bought out by Temple Health. I'm not so sure they are the same "Fox Chase" anymore. I had RP at Univ of Penn. I'm thinking of looking into both.

J

Jay, sorry to see you back for real. Not much I can add to JNF excellent advice and mattams solid comments.

As you know, you're a pretty long way from needing to be on HT for now. Not much more I can add, do your due diligence, get with the best practitioner you can find, (you've been treated at great institutions so I', guessing you are pretty good at that) and take it one day at a time.

Sorry you lost your < Jay. You've certainly done all the right things and looks like you have excellent resources. Looking at your signature, I see you had a decipher test on 7/16 with some decent results and average risk. And then on 1/17 you had decipher GRID PORTOS that showed greater risk. I'm not familiar with the GRID PORTOS so I can do some more research into what that is....do you get any insight into the difference between those two tests? If you can get a PSMA scan that illuminates the bad cells soon after they are visible, a spot radiation treatment would be very effective.

These are always interesting posts. I am no expert but I can tell you about my experiences with my three MOs (sounds like a TV sitcom).

The period after failed primary/definitive treatment(s) seems to be mostly undefined as to what should be done and when to do it. I think of it as the Wild West of PCa treatment. A lot can depend on the psychology of the patient. Most men might do well to defer treatment until needed but an increasing PSA can really pile on the anxiety.

My MOs suggested that treatment can be triggered by any one of the following:

-- shorter PSA doubling times (probably 9 months to a year, or less)
-- a very high PSA
-- visualization of mets on a scan
-- physical symptoms

Of course the great improvements in scans the past few years (PSMA scan and others) have radically changed the last two triggers, and for the better. You'll be starting treatment a lot earlier compared to seeing mets on a bone scan and these days a PSMA scan will detect mets well before bone pain. Anyways, it used to be that some MOs, but certainly not all, were okay with letting the PSA go above 20 before saying it's time to do something.

The only agreed SOC seems to be treatment with Lupron-type drugs (or Orgovyx) in combination with a Second Gen Anti-Androgen--Zytiga or Xtandi being the most common.These combination drugs have greatly increased the lifespans of men just since my diagnosis, and the data is still coming in.

There are still questions about taking "vacations" during ADT treatments. Vacations don't increase the effective length of the drugs but some men swear by symptom relief, though I don't see how. I'll justbstick with continuos use of the drugs

Well, there you have it. I don't know anything. I'm just parroting my doctors, and they do seem to know what the literature says.

I included the link to a 2023 Nature review authored by some well known doctors/researchers in one of the best journals around. I haven't read even close to the entire article -- after awhile the words come into my Lupron brain like Charlie Brown's teacher speaking. It does seem bto be a very good review.

Good luck as your journey unfolds and welcome back.

https://www.nature.com/articles/s41391-023-00712-z

In my opinion Orgovyx appears to be an excellent drug to consider for intermittent ADT as one’s testosterone recovers much faster than with the injectables (Lupron, Firmagon, Eligard, etc.) as the drug loses its effectiveness in a matter of days rather than months after cessation. I think this makes it an improved choice for ADT vacations. We have several men in the forum that have been taking Orgovyx, but I don’t recollect any that we’re pursuing an intermittent strategy.

JayMot, it's good that your Uro, isn't concerned (and not surprising at this low PSA). I just don't understand why he wouldn't accommodate your request for a more sensitive PSA test. Maybe he's right, and maybe it's not necessary. But IMO , if it makes you feel more comfortable having more data, then yeah, it's necessary. JMHO

I applaud your actions Jay. What little you described about your urologist is enough for me to sever that relationship. How smug to tell you …nothing to worry about….and no reason to use modern medicine and technology to do more investigation……. Besides, you already have had a post surgery recurrence that tells me your PCa should no longer be the domain of the urologist.

I am a strong advocate for multiple assessments and for getting a feel for a certain specialist before actually needing them. Harkens back to my Boy Scout days, Be Prepared. Good on you to investigate and hopefully stay ahead of the cancer. My hunch is that your urologist is a “wait until something’ happens and then we can react to it” kind of practitioner. And to suggest against an assessment from another specialist is a big red flag for me. Not what I would want in your shoes.

Early on in my journey I asked my urologist about a meeting with a highly regarded medical oncologist due to my high risk dx. He said it was a bit early for that, but if it would help me he was fine. He stated he had often worked with the oncologist and said he would make the call and get me the meeting. This strongly confirmed that I was with a professional that had my best interests guiding his actions. BTW, yesterday afternoon I had my regular visit with my urologist and blood draw for PSA, at least for the 50th time since dx.