At 12 years post-RRP and age 73, my PSA is 35-45 (WHO vs Hybritech protocol) and my doubling time (DT) is a very consistent 4 months but I have no symptoms … yet. My fourth c-11 choline PET/CT scan finally found many scattered lymph node mets producing the PSA; no other scans can see them … yet. A long list of oncologists want me on ADT (hormone therapy) + chemo yesterday, but of course they care only about longevity and their NCCN-approved Standards of Care, and like most oncologists they expressly delegate side effect/SE management to our primary care physicians/PCPs. (e.g., “They” can just remove any breasts we grow, give us painkillers for the mastalgia/breast pain”, and implant a sling to fix incontinence; we can just dang well ignore our night sweats; and so what if we’re tethered to a toilet for life?”) However, even the most dismissive discussions of SEs admit that ADT mitigation efforts leave athletes like me fresh outta solutions.
I keep telling them there’s more to life than heartbeat, but they don’t want to hear it. Thus these questions, under the statistical assumption that my median prognosis with all-out drug warfare is two years until castrate resistance (CR) then another 18 months until death:
1. Is it sane to even consider delaying ADT until I feel symptoms, as many med oncs advise with less threatening risk profiles? With my previous DT of 30 months, that was a no-brainer; at 4 mo it’s not.
2. How about delaying until ADT becomes palliative … i.e., feels better than the symptoms … as a significant minority of med oncs such as Scholz of the PCRI advise? Or is the scattered herd of lesser but growing alligators too threatening to even consider that?
3. Let’s complicate #1 and #2 with this: two med oncs strongly advise a biopsy/bx of my most blatant node first because I had a carcinoid cancer removed from my bowel 12 years ago, post-op pathology gave it a >.50 chance of recurring, and its primary chemical marker (chromogranin A) now suggests it could be returning in conjunction with my PC. If so, my prognosis and my treatment options are dramatically reduced. The most accurate and quickest way to determine whether there’s a neuroendocrine (NE, aka “carcinoid”) component to my PC is a bx of my most prominent node, which is crammed in between my carotid artery and my trachea. Even the Mayo Clinic’s “Mr. Whac-a-Mole” himself, c-11 choline scan guru Eugene Kwon, threw in the towel on whac-a-mole at that definitive scan last November and pronounced it “time for ADT + chemo”.) Its location allows only laparoscopic biopsy. That, in turn, raises this question: If they’re going to access the node anyway for a bx, why not just excise it while they’re in there, if that’s feasible, before it matures into a new primary tumor? Shouldn’t that buy me some time on the PSA curve and reduce the threat to those nearby vital components both now and then again when ADT fails?
OK, your followup question is clearly and justifiably, “Why not just try ADT first?”. “If your T and your PSA drop significantly, yor PC is not NE” (NEPC is castrate resistant from the start, leading to a very short life expectancy). My response, and my next question of this group, is …
4. “But mightn’t a laparoscopic bx and possibly an excision:
a) answer the NE question AND
b) maybe remove a serious near- and long-term vital organ threat while it’s still discrete AND
c) do it all sooner and more definitively than an ADT trial AND
d) perhaps provide some useful insight into the nature of my returning PC?
(This would be done by a full-time cardiothoraxic surgeon at a major hospital, I sleep through anesthesia, and surgeries simply give me a bit of time to catch up on some neglected reading and TV.)
5. If such a bx proves negative for NEPC, we’re done with this line of questioning. But if it’s positive, and my median survival prognosis is thus cut from 3.5 years to < one year, why screw that year up with a bunch of awful intended and unintended blows to my QOL?
I.P. Freely (but slings are considered successful if they bring leakage down to my normal level)