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← Return to Taking Orgovyx long term
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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?
Replies to "At issue is that the surgical/hormone oncologist and the radiation oncologist have differing opinions of the..."
Adding apalutamide or Enzalutamide does add to the side effects for many people. Darolutamide not so much, most people have very few side effects.
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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.