Starting ADT

You mentioned that initially, “the biopsy yielded T1, N0, M0 with a Gleason of 3+4. Two positive out of 13 sections.”

—> what % of the 3+4 was “4”?

—> did the MRI or biopsy report mention anything about cribriform pattern, extracapsular extension, seminal vesicle invasion, perineural invasion or intraductal carcinoma?

—> what did the pre-treatment PSMA PET scan show?

—> what did the pre-treatment biomarker (genomic) test show?

—> what did the genetic (germline) test show?

(Those tests may have provided some insight into whether something more serious than a typical 3+4 was lurking unseen.)

—> What are the SUVmax scores of the lesions from the recent PSMA PET scan?

For your current situation, doublet therapy (ADT + ARPI) is common. This usually is part of a broader plan to kill the metastasized cancers.

At this point it’s helpful to know whether your prostate cancer is hormone sensitive; that will help guide upcoming treatment decisions.

It is possible now to get ADT in daily pill form (Orgovyx) rather than monthly or quaterly injections (e.g. Firmagon, Eligard).

I started on the injections in fall 2021 and switched to the pills in spring 2024: for me, Orgovyx was a huge quality-of-life improvement, but everyone's experience is different.

Unfortunately, while Orgovyx is priced competitively with injectables in many countries, in the U.S. it's many times more expensive, so some insurers might try to steer you away from it. 😕

It's still worth asking, though. And unlike Eligard, Orgovyx won't give you an initial testosterone surge before it starts suppressing.

On the other side of the treatment (masking testosterone reception in cancer cells), while Abiraterone is quite good, there's a new generation of ARSIs informally called the "lutamides": Enzalutamide, Apalutamide, or Darolutamide.

The lutamides generally show better outcomes than Abiraterone and sometimes milder side-effects, but most importantly, they don't require you to take a steroid (Prednisone) along with them, so you avoid all the extra potential complications that come with that.

The problem once again, as you might have guessed, is money. Because Abiraterone is old enough to be out of patent, generic versions cost as little as $30/month. The prices of the lutamides are massively inflated in the U.S. — all well north of $10K/month — so insurers will steer patients away from them towards older, "good enough" Abiraterone for obvious reasons. And again, Abiraterone really does help a lot: it's not the cutting-edge, but it's far from obsolete.

I'm kind of surprised you weren't started on ADT upon positive biopsy. As others suggest, the doublet therapy is the current standard of care. But there are choices to discuss with your OncDoc. Like using Orgovyx (pill) instead of Eligard or Firmagon (injections) and coupling that with a "nicer" ARPI such as Nubeqa which has fewer side effects and doesn't require taking prednisone. Take the time to do some reading on this site and then talk to your Onc about your preferences. If he/she stands pat on initial recommendations, consider getting a second opinion. ADT therapy is not fun but it does keep the PCa at bay. Exercise is the "secret sauce" for minimizing the negative effects of ADT therapy. Best of luck!

Hi all,
Thanks for the input. I will have to look into these other drug options.

Now, to answer @brianjarvis :
—> what % of the 3+4 was “4”? one mention of 25-30% and another of 40-45%

—> did the MRI or biopsy report mention anything about cribriform pattern, extracapsular extension, seminal vesicle invasion, perineural invasion or intraductal carcinoma? There is mention of "perineural invasion"

—> what did the pre-treatment PSMA PET scan show?
- Prostate and prostate bed: SUV 4.8
- adjacent Lymph notes: SUV 7, 4.1, 4.2
- T5 rib : SUV 3.6
- T8 rib : SUV 3.3
- T3 rib: SUV 3.0

—> what did the pre-treatment biomarker (genomic) test show? I confess that I don't know if I have that.

—> what did the genetic (germline) test show? Haven't had one

(Those tests may have provided some insight into whether something more serious than a typical 3+4 was lurking unseen.)

—> What are the SUVmax scores of the lesions from the recent PSMA PET scan? See above.

I know we shouldn't look back but it seems that a PET at diagnosis would have been helpful. The radiation doc said that this isn't standard.

@damonk
With the number of metastasis you have some doctors would want you on triplet therapy (chemo included). They don’t like zapping more than five metastasis, and it looks like you may have more based on the SUV’s.

Abiraterone is recommended as the first drug to use, And it is supposed to be a good compliment to chemo. As others have said, the lutamides Are a lot easier on the body.

I would want to ask the doctor why they’re only going to put you on hormone meds when you have so many metastasis. Yes, ADT and abiraterone Will shrink the metastasis and stop them from growing, but it’s unlikely to eliminate them, It’s just leaving them for later. In my case, Abbie Only kept my PSA undetectable one month out of 2 1/2 years. I had PSA tests every month. After I stopped, Abbie, I had a metastasis in my spine, Maybe that wasn’t the right drug for me to start with. Make sure your PSA is staying undetectable while on the two drugs.

I would definitely want to get a second opinion from another center of excellence. Is just getting on the drugs, the correct treatment.

As for getting on abiraterone, That drug is pretty hard on the heart. I was on it for 2 1/2 years and it gave me high blood pressure and four afib Events. It did give me an extra 2 1/2 years before I went on Darolutamide Which has kept me undetectable for the last 28 months. The thing is these drugs only work for so long before they fail. I’m pretty sure if they had put me on a lutamide First, it would have failed before 5 1/2 years had gone by. Was it worth the issues that Abbie caused, Well, maybe it did extend my life. If you have any heart issues, you really need to talk to your doctor about not getting on Abbie.

@damonk The radiation oncologist is correct, a PSMA PET scan isn’t standard at initial diagnosis for a 3+4. But, you had such borderline or missing numbers - 40%-45% “4” in that 3+4 might very well have been a 4+3 (if a 2nd opinion had looked at it), perineural invasion increased the risk, no biomarker (genomic) test done, no genetic (germline) test done….. It was just begging for a PSMA PET scan to be done.

Anyway, that’s now all in the past. Looking forward, it’s best to ensure that every relevant & available diagnostic tool is used so that you can make a thoroughly informed decision as to what next.

With your Eligard & Abiraterone/Prednisone regimen, what’s their plan to kill this thing?

@brianjarvis Yeah I agree with your assessment and should have been a bit more active in the direction. It all seemed so benign then and I wasn't focused enough. But that is the shoulda, woulda, coulda black hole. Got to move forward. So far, the Med Oncologist wants to start the ADT regimen ASAP, but that is it. External radiation is being considered but is not initially planned. Also no Chemo. I am finally talking to the genetics people this month. In the meantime, I'm seeking out other recommendations and continue to learn from the advice in this group. I'm going to be bringing learnings from here to my next appointments.

@damonk
Do you have the ability to go somewhere else to get a second opinion?

It really does sound like you are in a situation where you need a second opinion from a center of excellence. The treatment just doesn’t sound right based on what you were saying they found in your prostate biopsy.

I was on ADT for two years after 20 sessions of radiation. The only bothersome thing ‘em was the hot flashes which came unannounced at every hour of the day or night. If you go on Abiraterone (Zytiga) it might be wise to make sure they are monitoring your liver enzymes (ADT, AST, Bilirubin) because these can be affected by the abiraterone…
Best to you on your journey…