New to all of it

Posted by dmx @dmx, 1 day ago

Husband (D) 75yrs, active, good health, chronic conditions under control (he is the star patient with all of his doctors). Here we go:

3/2025 PSA: 4.94 (uro did nothing)
5/2026 PSA: 5.6 (uro ordered more tests)
7/2026 PSA: 4.34. (it went down????)

5/2026: MRI PiRADS 5
5/2026: ISO PSA 13.1
5/2026: PSAD 0.25

6/2026: PET Scan, PSMA RADS: 5, Expression 5/5
6/2026: BIOPSIES: 10 cores as follows
A: Adenocarcinoma: 4+5 = 9 in 75% w/perineural invasion
B: Adenocarcinoma: 4+5 = 9 in 25% of sample
C: Adenocarcinoma: 3+5 = 8 in 45% of sample
D: Benign prostatic glands & stroma w/chronic inflammation
E: Benign
F: Adenocarcinoma: 5+4 = 9 in 65% of sample w/perineural invasion
G: focal, high grade intraepithelial neoplasia (HGPIN)
H: Benign
I: Benign
J: Benign

7/2026: Decipher 0.99.

We have 2 Centers of Excellence in Chicago: Northwestern and Univ of Chicago (both are a pain to get to). Also have Northwestern Medicine Cancer Center which also has Proton Center in the suburbs (assume this location is considered part of the Ctr of Excellence).

There really hasn't been a lot of discussion from doctors on how to decide what to do.

Uro said "surgery" without showing us any images whatsoever and said it's up to us. Only said "it's aggressive" and "you don't need genome/genetic testing". We're getting a new Uro.

RO at Proton Ctr suggested Radiation + ADT (start as soon as possible). He was the most thoughtful, explained the most, AND showed us the images for the first time. HE is the one that told us the 3 criteria they use to classify: PSA (10+) Gleason, Clinical T Stage. Husband doesn't fit with PSA <10. But said it's T3b. (our first official stage diagnosis)

After looking at the images again, he was changing his mind, saying, based on the images, he thought traditional radiation would be better because he could "bend the beam" around the prostate with their equipment (it has the MRI guided assist) and try to stave off damage to the rectum. I asked "can you do traditional on the prostate itself and then do the proton on the lymph?" He said I gave him something to think about!

Question: do RO's only do ONE type of radiation no matter what? (I am a little familiar with accelerators.). Why wouldn't you do both types to fit the individual's situation? Lymph glands are not very big so proton makes sense to me.

Saw 2 different MO's. The one at NW was very thorough (although they treat more than just prostate cancer) and recommended ADT medication PLUS the ARPI med. (They all blather on about the proven studies; which is fine.).

The other MO said he'd need radiation after surgery anyway. Neither showed us images (isn't seeing believing?).
The NW MO ordered more tests; including something from Tempus. And that we would have a 1 hr appt with nurse specialist just to go over the medications. The other MO gave us a sample bottle of Orgovyx and a nurse came in the room and said once you start, don't stop.

All said, surgery vs radiation & medications have similar outcome; as all the doctors have said and so does the documentation. We are leaning toward the Radiation + meds.

Got Dr Walsh's book. I'm about halfway through.

Comments? Advice? All are appreciated. Thank you to everyone!
I'm not new to being a caregiver. I cared for my mom who had a rare brain disease, am currently caring for 92yr dad and now the husband.

(just read a 16pg review on "Androgen Receptor Pathway Inhibitors and drug-drug interactions in prostate cancer" (2024). There's a great table in there of the "Actual & Predicted drug-drug interactions with ARPI's and commonly used drugs.)

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

You have already received great advice above; I will add a few more wrinkles. I had BCR in April 2026 after RALP in 9/25. I have aggressive cancer with cribriform, PNI, EPE, now pelvic lymph node involvement and Deciper .96 (no distant mets) . I am now in the middle of EBRT and taking the drugs discussed below.
1. I chose the Estradiol Patch instead of Orgyvx because I will be on it for 2 years and it is supposed to have fewer side effects. It is considered "unconventional" ; I will start a separate thread soon on this subject once my first month blood test results are in.
2. Once the lymph node involvement started, it was clear I needed something other than just ADT/patch. Most people prefer an ARPI like Nubequ/darolutabide, but I ultimately decided on Zytiga/prednisone because: 1) The study (NRG-GU006 / BALANCE) showing significant benefit of using a second drug in addition to ADT for patients in the Luminal B subgroup (like me), used Zytiga as the second drug; 2) My MO preferred to keep the Nubeqa in reserve for later recurrences (consistent with the NCCN guidelines). You need to ask your doctor to provide the detailed pages that accompany your short Decipher Score summary sheets to see if you are in the Luminal B subgroup.
3. Based on our Decipher scores, we are on the tail end of the "aggressiveness" distribution. I always keep that in mind when I see results of studies, because even studies of "advanced" or "high risk" patients probably don't include a lot of patients like us. Just a lens I use to review information.
4. Once you are getting treatment and checking on your PSA, ask for "ultrasenstive" tests-- it can't hurt and you may find important information earlier than with the standard test.
Good luck with making this decision and I hope your treatment is successful!

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