New to all of it

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!

@dmx, how are you and your husband doing? Have you had further discussions about your treatment preferences with the cancer specialists and the pros and cons of each option?

Thanks Colleen. We are doing ok. The emotions come in waves. Just when you feel like you've got a handle on it, you get a phone call that sends your heart racing.

Hubs did see another Northwestern urologist who said he really didn't recommend surgery in this situation because of the location of the tumor (bulging out the back side of the prostate, too close to rectum). BOTH urologists said the Decipher test was not needed and shouldn't have been done. 2nd one also said that an ISO PSA was not needed either. That we're probably getting more information than we need. (whatever). He mentioned something about Luminal B. I don't even remember what that is in reference to. The Uro did seem ready to be available to assist with symptoms when they arise. Overall, we liked him much better than the 1st one.

Met last week with MO's assistant (a PA-C). She seems very on top of things. Spoke very candidly about how often their patients have experienced side effects on the 2 meds of choice for him (Orgovyx & Nubeqa). And that a lot depends on where the testosterone level is to start. If it's high, you will suffer more side effects. Also said the Tempus XG (?) does not show any pathogenic mutations from a hereditary standpoint (yippee I hope) and that the remainder of the test will take 3-4 weeks to get results that address his specific cancer.

Hubs was scheduled for colonoscope in Dec 2026, but they said get it done before anything else. So he did that Friday and so far, everything was good. Only 1 polyp removed. Results in 7-10 days.

So, with that done, it was decided to start the 2 meds on Saturday. So far so good. Then we get a phone call today lining him up with the preliminary appts for the hydrogel and fiduciary markers Aug 11; CT simulation on Aug 18 along with MRI on the same day. WHOA! I thought he would take the medications for about a month to reduce the size of tumor BEFORE anything else was scheduled. Am I missing something?

@dmx If the ADT has started that is about 25 days before the simulation. A test of PAM50 expression would be required to determine if it was Luminal B. It is associated with multiple cancers (usually breast). More aggressive but also more responsive to ADT. Do not assume your husband has this from the comment. Your MO should be able to tell you with the genetic testing. The 2 drugs (Orgovyx, Nubeqa) usually have fewer side effects than other ADT drugs but are still very powerful. Are you doing MRI photon or proton? If the lymph node is in the pelvic area the beam can be shaped to include it usually at a lower dose (flame was mentioned previously) so it can be treated in same sessions as prostate.

@dmx I totally am on board with your confusion; there is NO WAY his prostate will shrink that quickly.
The entire treatment protocol is based on the simulation so how accurate can that be when organs and glands are not where they should be??
I am not an oncologist, but I think that even placing the rectal spacer is very ‘iffy’ given the proximity to the rectum; a lot has come out recently regarding spacers; they’re good, but subject to certain conditions and the ability of the operator to get it exactly where it needs to be…hardly an ideal situation in your case.
Since he is on a powerful ADT combo, there is absolutely NO RUSH to do anything - these meds will arrest the cancer, shrink the gland and make any treatment - even surgery - easier and more likely to have a successful outcome. It could take 3-6 months to get the desired shrinkage necessary.
You asked a very intelligent question so right there, you know more than the average person going into this. Keep your head, advocate for what you know to be correct, and don’t allow yourself to be cowed by someone in a white coat!
Phil

Hi,
It sounds to my non medical opinion that your cancer is on the aggressive side. At 75 I would think that it might be easier to avoid the affects anesthesia could have on your body plus recovering from surgery.
If it was me I think I would go with some form of radiation with ADT drugs before and after radiation. Xray sources like Cyberknife will max out an area if the cancer returns plus can also affect your bladder since the rays go past the intended site. Proton radiation hits just the site and does not go past it. Proton can also be used multiple times in the same area if the cancer returns. With that being said if you have access to a Proton machine, great. If not a Cyberknife like option would also work. If you have access to both types of radiation I would do Cyberknife 1st the Proton 2nd. Work with doctors that want to work with you, second opinions are not a bad thing.

Dave 3+4

@clevelandguy
Since I was 75 I have had 4 surgeries where I had to be put under. I’ve never noticed any long-term effects From anesthesia. Had surgery in June And I was awake and out of recovery room clear headed in a little over an hour after surgery. Had a knee and hip replaced since 75.

Besides that I’ve been put under five times since 75 to do Cardioversion to stop my Afib.

Not sure it’s really a big deal to be put under.

@jeffmarc Well good for you, but not everyone reacts the same and age does play a factor in your risks and recovery rate based on other medical issues a person might have.

Dave 3+4

@clevelandguy
I guess I was just trying to get at the fact that assuming somebody’s going to have a problem due to anesthesia is not universally true, Just because they are 75 or older.

@jeffmarc Never said that, what I said was that at 75 with the anesthesia and surgery combined it might be easier to do radiation instead. Just my opinion like we all have. It’s up to each individual to decide their course of treatment. The person was asking for comments so I gave them mine. We all comment here based on our own opinions or is yours the only one that matters?

Dave 3+4