Taking Orgovyx long term

At issue is that the surgical/hormone oncologist and the radiation oncologist have differing opinions of the seriousness of my cancer. They work closely together, but the surgical oncologist thinks the person who initially reported my PET results mistook urine (the radiation being eliminated) for lymph node metastasis, saying the two are in close proximity. The radiation oncologist took the stance of "lymph node positive" in his approach to my treatment and the other specialist supported the use of Orgovyx, which was initially prescribed by my urologist. Both surgical and radiation specialists say their experience is that adding a lutamide to Orgovyx significantly increases side effects, but what I find online doesn't confirm that. Any insight?

At issue is that the surgical/hormone oncologist and the radiation oncologist have differing opinions of the seriousness of my cancer. They work closely together, but the surgical oncologist thinks the person who initially reported my PET results mistook urine (the radiation being eliminated) for lymph node metastasis, saying the two are in close proximity. The radiation oncologist took the stance of "lymph node positive" in his approach to my treatment and the other specialist supported the use of Orgovyx, which was initially prescribed by my urologist. Both surgical and radiation specialists say their experience is that adding a lutamide to Orgovyx significantly increases side effects, but what I find online doesn't confirm that. Any insight?

It must be frustrating having an ambiguous result like that. Lymph node involvement is less serious than remote metastases in bones or vital organs, but it's still concerning enough that you're right to want a more-definitive answer.

Have they offered you the option of having a couple of the suspect lymph nodes removed so that they can analyse them properly?

As far as personal experience goes, I've never been on ADT without an ARSI, so I can't compare, but my side-effects seem similar to those reported by people on just ADT. For a small minority of people, -lutamides can lead to heart conditions like prolonged QT interval, so if you have a history of serious heart issues, that might be encouraging them to steer you away.

Adding apalutamide or Enzalutamide does add to the side effects for many people. Darolutamide not so much, most people have very few side effects.

Thanks for the comment! The major reason I chose against surgery (RP + r/l iliac lymph nodes) was that the surgeon said he wasn't sure he could get both lymph nodes due to my having prior right inguinal hernia repair with mesh inserted. Being uncertain of the other node, I would almost surely be on the same treatment plan I have now. Darolutamide/Nubeqa has been mentioned as the most compatible with heart issues. I am taking Eliquis for aFib that was diagnosed last summer. A gentleman I met through an online session has recurrence in multiple lymph nodes and is taking only Darolutamide. His testosterone has rebounded to 1K (high normal?) but his PSA is undetectable. He is scanned every three months and activity in the lymph nodes is no longer showing. And he says he had fatigue the first months but no side effects thereafter and has been on the med since last August. I think that's called a Grand Slam!

Yes. More specifically, Darolutamide is less likely to cross the blood/brain barrier than the other -lutamides, so it has a reduced risk of stroke (through the risk is relatively small for all three).

Couple more things come to mind.

Darolutamide also reduces risk of brain fog and fatigue, issues people have with Enzalutamide and usually aren’t an issue with Darolutamide.