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The paradox of testosterone and ADT
It’s a curious thing, really — this blind devotion to testosterone as the prime mover in prostate cancer’s twisted little drama. One might imagine that a tumor emerging in an environment already barren of testosterone — my personal endocrine wasteland — might, out of sheer metabolic necessity, learn to dine elsewhere. Glucose, glutamine, maybe even sheer spite. In other words, it may never have been dependent on testosterone in the first place, rendering castration-based therapies about as effective as removing the steering wheel from a horse.
And yet, when I dared to suggest this — that perhaps my tumor was an evolutionary overachiever, already adapted to scarcity and thus indifferent to the standard hormonal starvation diet — I was met not with curiosity, but catechism. The gold standard, they said. Tried and true. As if medicine were a medieval guild and I, an unruly apprentice questioning the sacred text.
Now, don’t get me wrong — gold standards exist for a reason. They work. Mostly. But I’m not "mostly." I’m me. And my concern is not the statistical majority. It’s whether this doctrinal adherence overlooked a tumor that, by virtue of its very origin, had already found a detour around the testosterone toll booth.
So here we are: therapy proceeding with grim determination, and me quietly wondering if we’re starving a tumor that was never hungry in that way to begin with. And if that’s true, what then? Will the outcome reflect biology’s stubborn individuality, or medicine’s one-size-fits-all optimism?
Either way, it seems I’m not just fighting cancer — I’m also in a polite but pointed disagreement with protocol.
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HugInterested in more discussions like this? Go to the Prostate Cancer Support Group.
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Hans- hopefully she ll see our posts. Mr. Vetter is the moderator, from Mayo in Rochester Minnesota
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1 ReactionI tried to attend one meeting and found that the two or three different links to the meeting did not work. There’s no standardized way to get a link to that meeting at this point.
I had my last Lupron shot end of September 2024 and quit taking abiraterone and prednisone (with doctors agreement) in January 2025. So it has been 7 months since last Lupron shot. Just had my testosterone tested on 4/21/2025. My level is < 7. I have been very weak in the legs and tire quickly. Will my testosterone levels ever rise so that these side effects will stop?
@ecurb @hanscasteels @jeffmarc contact Dick Vetter (rvetter@mayo.edu), the facilitator of the Prostate Cancer Support Meeting. He'll send you the registration link. You only need to register once and you'll receive monthly reminders.
Prostate Cancer monthly meetings are held the second Wednesday of every month from 12:00 p.m. to 1:30 p.m. Central time. The next one is May 14. See details in Events.https://connect.mayoclinic.org/events/
May 14 https://connect.mayoclinic.org/event/prostate-cancer-support-group-meeting-1-6c4df168/
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2 ReactionsHow long did you stay on Lupron and Abbie? For some people, it takes as long as they were on it to recover their testosterone. Some people never recover it, depending on how long they had been on it, That’s true in my case it seems since I was on it for eight years.
The older you are though longer, it takes to come back. My brother had Six months of Lupron At 76 and it took him over a year for his testosterone to get above 200.
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1 ReactionI hope you get to have that discussion…and many more. I keep saying this same thing, “I just want to have a hat about the things I know and am learning to see how they fit so before we pour those toxins into my life partner, we can have more faith than hope. While it was decades ago with ancient rough meds when I watched chemo take my Dad down to nothing, …then out. It’s different now, but there is still uncertainty how each will respond. Wanting to have ‘all’ the discussions with more than myself keeps me hoping that each 20 min appt will ‘go over’ if we can get their interest. Good luck at Mayo - excellent system! You will appreciate how things go there.
We should know very soon - Firmagon is now on board and also chemo #1 as of yesterday. It would have been interesting to watch the response to the Firmagon fora bit before chemo, but apparently, the ‘authorizations’ go smoother with the whole plan, don’t ya know. Chemo is docetaxel+ carboplatin, which is not standard for mHSPCa - due to ‘high volume’ designation because Mets is in a visceral organ - lung only. Unique presentation = unique response? Suspected transformation already as Hans suggested in this thread?
Can you ever really know? Can a few rare cases turn enough heads so that doctors will respond differently to the 99.7%?
I don’t know enough about the reason for the inclusion of the carboplatin to speculate but they are certainly hitting those lung nodules hard.
We see many cases where lesions almost disappear with just ADT prior to definitive treatment but here they are going all in and not waiting for anything.
Phil
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1 ReactionThe ‘Art’ of the science? I am not sure I could give an exact why, to be honest, other than the suspicion of a ‘sneaky’ cancer presenting very oddly. The ‘plan’ is coming from a CCOE and was modified by our local MO from what we are calling ‘quad’ therapy (triple therapy + the carboplatin) to double chemo, following by double ADT (+ ARPI) at the end of chemo. I guess we have to trust the unconventional for the win. Living with uncertainty may not be a fool’s errand.
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2 ReactionsI have to think that although they did not test for androgen sensitivity, they did find ‘something’ in that biopsy that was different from ‘regular’ PCa metastasis - something seldom encountered.
And although it is concerning - what oddity isn’t? - at least you know they are not treating this ‘pro forma’.
I saw a website the other day concerned with breast cancer and I was blown away. In my ignorance, I thought there were 2 basic types, but there are something like 18 different and distinct types and all must be treated differently.
Prostate cancer, too, has many variants and your husband’s is probably one not commonly seen; remember, he was in remission for over 17 years and now this?? Definitely an odd case for sure.
Phil