Still not on ADT again - should I be worried?

You definitely need to get a second opinion. If you mention where you live, I could possibly give you an idea of good doctors near you.

If your PSA is rising, you should not do nothing. That can lead to A short overall survival. I can’t tell you how many people have regretted not getting second opinions.

If you cannot handle ADT, the estradiol patch isn’t an alternative that works just as well and has many fewer side effects. That might be what you need to do. There’s also the option of an ARPI alone. Something like Nubeqa or Xtandi, That can control your prostate cancer, but have very different side effects from ADT. Nubeqa Has no side effects for most people.

Don’t Stay with the answers you’re getting now get to a different doctor for a second opinion. Mayo would be a great place to go.

Also, a different delivery mechanism for ADT might help.

I found Orgovyx (daily tablets) *much* easier to tolerate than Firmagon (monthly injections). Morning stretching and light resistance training (weights) 3×/week have a huge impact on my energy level. But I don't know your history, and obviously, something like heart issues would change things.

YMMV.

If after surgery + radiation + ADT, your PSA is still rising, then yes you should be concerned — and at the same time focused on a solution.

What does that mean - “2 are too far north to zap”?

Where exactly are the 4 metastases located?

Why exactly does your new Clinical Oncologist believe that “2 are too close to previous Photon Beam and 39 Salvage treatments”? What is the specific concern?

You indicated that your previous ADT experienced “was so terrible.” What was that experience? (Did you engage in resistance-training exercises to minimize the ADT side-effects?)

How old are you?

Since your prostate cancers are PSMA-positive, have you discussed this option?: https://www.oncologynewscentral.com/drugs/info/fda-approves-combo-regimen-for-metastatic-hormone-sensitive-prostate-cancer

68 year old, Prostate cancer onset at 55.
2013 - 2014 PSA rose from <4 to >12. MRIs, Scans, and Biopsy showed multiple lesions 4+3=7 and suspected spread to bladder neck.
Radical Prostatectomy 2015. PSA rising so 39 EBRT with Lupron in 2016.
PSA rising again 2021 see chart.
PSMAPetScan 2023 found metastasis on Left iliac, treated with proton SBRT. PSA still rising PSMAPETScan found metastasis on Right iliac, treated with proton beam SBRT.
PSA till rising PSMAPetScan found ABDOMEN/PELVIS: Prostatectomy without suspicious tracer activity at the vesicourethral anastomosis. Tiny new tracer avid left periaortic retroperitoneal node (image 124), aortocaval lymph node SUV max 6.7 (image 136), and right obturator lymph node SUV max 7.4 (image 152). Additional minimally avid foci anterior to the right S1 segment on the prior study is less conspicuous on the current study. Left hepatic cyst. Cholelithiasis. Stable unenhanced appearance of the remaining solid abdominal organs.
MUSCULOSKELETAL: No suspicious radiotracer activity. Previous faint tracer uptake within the left posterior 6th rib in the right iliac bone are less conspicuous.
IMPRESSION
1. Few tiny retroperitoneal and pelvic lymph nodes with demonstrate mild tracer uptake suspicious for nodalmetastases. Key images saved.
2. No findings for metastatic disease elsewhere.

CO said he would not want to zap those as previously mentioned.
My experience with Lupron while getting EBRT: unbearable hot flashes, not able to sleep, muscle loss very quickly, cramps, stomach distress. They put me on trazadone which made previous minor tinnitus major and still nearly unbearable.

This is the short story!

Meeting with the new CO Thursday, will proably go back to Mayo MN for 2nd. I live in Minneapolis, MN in the winter and northern MN (Lake Vermilion) in summer.

@brianjarvis

Interesting - thanks!

@briang1958
Definitely go to Mayo in Minnesota and speak to Dr. Heath. She is a really great oncologist that speaks at many meetings and is really loved by her patients. You would have the best options for treatment from her.

You might want to ask about using estradiol instead of ADT. That can avoid a lot of the side effects you had but also work to reduce your testosterone. It definitely sounds like you need an ARPI, Darolutamide would be the best.

Get yourself a really good oncologist, One that specializes in prostate cancer. You have a very advanced case and you don’t want to encounter the pain that prostate cancer can cause if left untreated.

There is a lot of new evidence that ADT is not very helpful, and many doctors are recommending TRT to raise testosterone level to fight aggressive cancer.

@jeffmarc - As always, I appreciate your comments and guidance Jeff!

Thank You!

@pesquallie
Well, this is true in very aggressive cases where people have become castrate resistant it is not true for brand new cases where somebody is castrate sensitive.

Yes, I have questions about continuing ADT as well. I've posted here before:
68 Y.O., started with stage lll, dd the external radiation coupled with Casodex and Eligard. I knew immediately that the ADT compromised my CV system...narrowly avoided heart failure and subsequently moved to Firmagon. Even with Firmagon, it affected my CV system, narrowly avoiding a stroke....

There have been times I've suspended the Firmagon after Chemotherapy (Taxotere) because I knew the combination was overloading my body. I've gone 3 months without ADT at times and BP and blood sugar returned to normal.

I continued the Firmagon after the PSMA-PET scan showed metastasis yet again (L4 and the prostate gland itself) and subsequently added Pluvicto infusions. Here I am again: the Pluvicto seems to be effective but the combination with Firmagon once again caused me to suspend the Firmagon. It's been 2 months off Firmagon and 3 infusions of Pluvicto. I'm due for a 4th Pluvicto soon and have to decide whether to continue Firmagon or any ADT...I will s/w my oncologist re: Estradiol.

Bottom line, it seems that everyone reacts differently to these (continued) combinations and, eventually, must make their own decision based on the efficacy of the combinations coupled with the body's reaction...mine always seems to be CV issues...

Prayers are with all of us!!