New to all of it

You’ve got two really great GU oncologist you can go to in Chicago.

Chicago Illinois
At U of Chicago Russell Szmulewitz, MD - UChicago Medicine
Or at Northwestern David J VanderWeele : Physician Profile: Robert H. Lurie Comprehensive Cancer Center of Northwestern University : Feinberg School of Medicine: Northwestern University

I know people that are going to Dr. Szmulewitz And they love him. He is extremely competent one of the best doctors in the country, and I would rely on what he tells you.

The other doctor David J VanderWeele Is also really good. Another one of the guys that’s best in the country.

Not sure which one you can connect up with, but the first one would be my preference, Though they are both excellent.

Your husband has a very aggressive case of prostate cancer and needs the best treatment. There are multiple different types of radiation. Brachytherapy, IMRT, SBRT, VMAT, Proton and more.

For your husband, they might want to combine brachytherapy with IMRT or SBRT with IMRT. There are many other options as well.

That’s why you need to talk to one of those two doctors I mentioned. They specialize in prostate cancer and are really good at helping you both decide what the best treatment is for your husband.

He probably Should be on ADT plus an ARPI For the best chance of progression free survival (PFS).

If you can you want Orgovyx for ADT and Darolutamide for ARPI. Those two drugs have the least side effects. They may want to start him on Zytiga, Which has more side effects, but you can move from there to Darolutamide After a few years and get the benefit of two different treatments. This is something you want to talk to with one of those two doctors I recommended,

Get connected to one of those two doctors and you will realize that you then have somebody that can really help direct you for the future.

I am wondering if you had PSMA scan done ? I did not see that information in your introduction but I have terrible allergy attack so my vision is effected (I am looking through a "water" basically).

If you did not have it - have it ASAP since it might possibly find spread and than radiation field will be different as well as possibly length of ADT.

Wishing you the best of luck 🍀

What was the details of the PSMA PET test? RADS 5 is as high as it gets. How many spots did they find and where were they (the 5/5)? If the metastasis is local groin area it may be handled as part of radiation treatment of the prostate and pelvic region. If distant may also require SBRT. With metastasis surgery is usually ruled out. As Jeff said ADT should probably be started since that will arrest most further spread. Orgovyx has fewer side effects than other options as well as quicker recovery. However, I expect the doctors will want at least 2 years of treatment, and the loss of testosterone has it own side effects. Might want to research those, a lot of the more common are like menopause.

6/2026: PET Scan, PSMA RADS: 5, Expression 5/5
Two spots: prostate and vesicles
NO METASTASIS at this time!

I suppose the private MO giving us the sample bottle of orgovyx was the equivalent of "OMG! You've got a super bad case of cancer and we gotta do something immediately."

No one has reacted that way at all. No one has conveyed a sense of urgency to us. It's all been controlled responses "you have aggressive cancer". Nothing to indicate we should be alarmed and no one has ever said "please don't wait too long to make your decisions".

Best Wishes finding great Doctors and with your treatments. I have not had treatment yet and have just been studying treatments and information for the past 8 months.

This website https://www.prostatecancerfree.org/compare-prostate-cancer-treatments-high-risk/

attempts to pull information from different studies/reports. Then plot them on the graph. You can select/deselect different options to only look at a few choices at a time. If all are selected, chart is too difficult to read.

You will see surgery (alone) has approximately 50% relaspe in 5-10 years.

EBRT/Seeds/ADT has approximately 20% relaspe or 80% with no relaspse.

In 2026, SBRT may be better than EBRT and Seeds would likely be HDR.

Jeff’s recommendation of some form of External radiation, with HDR boost along with ADT would be good to discuss with Doctors. The external radiation can target the prostate, lymph nodes, seminal vesicles, and HDR target prostate more fully. Goal of treating the cancer but not damaging too badly the bladder and the rectum. From what I have studied.

You can research External radiation with HDR boost.

Best Wishes.

With a PSA of 4.94 at 75y/o, I can see why the urologist did nothing (unless that showed a significant increase from the previous test). With the next PSA test showing a trend, then it became interesting.

PSA can vary (monthly, weekly, daily, morning to afternoon), which is why just one slightly elevated PSA doesn’t raise much concern.

Always use the highest number Gleason score to guide treatment. In his cas: 9(5+4).

Decipher score of 0.99 is significant.

NCCN guidelines for very high risk prostate cancer (see attached) gives you a starting off point as to what to do. You get to tailor treatments from there.

Urologists are almost always surgeons, and will almost always recommend surgery; radiation oncologists will almost always recommend radiation. Not for any nefarious reasons, but just because that’s what they know. (The old saying applies: “If all you have is a hammer, everything looks like a nail.”) No reason to get overly concerned; just be aware.

As for their plan to “stave off damage to the rectum” during radiation, have they mentioned using a rectal spacer (like SpaceOAR, Barrigel, or BioProtect)?

Yes, they can apply different doses at different areas during the same treatment sessions - based on the FLAME protocol a boosted radiation dose can be administered where it’s needed, and less where it might not be needed. My oldest brother recently had 28 IMRT sessions using the FLAME protocol, where at each session, three different grays of radiation were administered, more grays to areas of concern, thereby minimizing certain risks near areas of less concern. (I don’t know if they ever mix proton and photon during the same treatment.)

As you see from the (attached) NCCN guidelines, for a 9(5+4), recommended treatment with radiation includes 24 months of ADT + ARPI. (See attached graphic of ARPI options.)

(At 65y, I had 28 sessions of proton radiation + 6 months of Eligard for my localized 7(4+3) w/PSA of 7.976.)

https://www.brachyjournal.com/article/S1538-4721(25)00117-5/fulltext
Several studies and papers like this.

@dmx Doctors try not to give you a sense of urgency. Most patients are spooked by the word cancer. See what reaction you get if you tell them you plan to spend the next 8 months deciding on a treatment. Most prostate cancer patients have that option with little or no impact on outcomes. Your husband probably does not. If the cancer is in the vesicles, it has already escaped the prostate capsule but is still in the local area. Not urgent in the sense of days but rather within a few months. Will probably take a couple more to get treatment after the decision is made.

All the members of the forum have given you great advice; unfortunately, none of us - nor the doctors! - know for sure which is the ‘best’ treatment. With every Pro, there’s a Con…
One thing you DO know is that his cancer is aggressive - even with a very tame looking PSA score. Sometimes, these are the most aggressive.
So whatever treatment you choose must be to the max: surgery might be followed with ‘immediate’ (3 months later) adjuvant radiation with ADT…
OR, radiation using a combination of HDR brachytherapy + radiation to the gland and pelvic nodes ( as others have suggested) + ADT.
Don’t get lost in the weeds of photon vs proton - it doesn’t matter! Both work and both can have side effects - it all comes down to the individual himself and the expertise of the RO.
Orgovyx is a very good starting point as far as ADT goes, and it’s up to your RO/MO if additional meds are necessary to insure the optimum result.
Best of Luck,
Phil