Diagnosed Stage 4 oligometastatic (low volume) PCA in 2021. Gleason 7, 4+3 .
Completed RT and 18 months on ADT (Nubeqa) paused the ADT in September after PSA non detectable and a fresh set of scans showed no “evidence of disease”.
Continued to do bloodwork quarterly and PSA remained at 0. Until this week results came in at 1.2. MO wants to wait 2 weeks and retest before any new action.
Appreciate any thoughts or suggestions.
anyone with similar experience?
With intermittent ADT, it's up to you to decide when to go back on it. There are no established protocols. Some guys use PSA, PSADT, or time with normal testosterone.
prostatecancer.news/2023/04...
Thanks TA.
They are waiting to see what your next PSA is to determine what the doubling time is. At that point, a decision might be made. Normally if the PSA is < 4, no action will be taken.
You raise an interesting question. If one's SOC follows trial protocols (eg 24 months of ADT), and at the end of that time your PSA is undetectable and ADT is discontinued, is that really an ADT vacation? As opposed to people on long term ADT getting tired of it and its SE's and stopping just for grins and giggles, expecting to resume as needed.
I expect to do an SOC stoppage per trial protocols later this year and am not going to call it a vacation because there is no expectation of going back on ADT unless my PSA/PC goes pear-shaped.
Its good you are seeing an MO and I would for sure listen to them hard. Maybe even get a 2nd opinion from a Center of Excellence.
Also you should be exercising -- resistance and aerobics, a lot. 5-6 hours/week or more.
Were you on darolutamide (Nubeqa) only?
they started me on Abi in the beginning, but had concerns with my ALT, AST numbers. So switched me over after 3 months or so
They did not prescribe or recommend a LHRH drug (Lupron, Eligard, Orgovyx, Firmagon etc)?
vacation is over
the chance you take......
Yo dude.How has the holiday actually been.
Not including the worries and fears with the PSA number(sure it will go down again with next adt)
Good experience????
It’s been nice, improved energy, less hot flashes especially at night, so improved sleep which has done wonders mood and general health feeling. Also much easier to get motivated for workouts and better output.
Dont feel 100% normal but much closer. And have been able to take off some weight that wouldn’t budge while on ADT.
Sounds familiar. I, too, am in limbo. Diagnosed Gleason 4+5 December 2020 with 6.0 PSA (but taking finasteride for BPH then which suppresses PSA by 50% or more--had to fight with urologist for a MRI guided biopsy due to rising velocity rather than more wait and watch--grrr...). Followed up with usual CT/MRI/bone scan, participated in SPOTLIGHT 18F-rhPSMA PET-7.3 trial (now known as Posluma PSMA pet scan). Nothing revealed other than prostate lighting up. Opted for RALP January 2021. Post-surgery pT3apN1cM0, 2 out of 21 removed local lymph nodes involved plus ECE. Undetectable PSA 6 weeks after surgery, detectable 6 weeks later at .036 doubling to .073 5 weeks later. Encouraged by surgeon and MO to jump on ADT followed by salvage radiation to prostate bed. Went on Orgovyx/relugolix May 2021 for 22 months and 35 sessions of IMRT July of 2021 to pelvic bed and local nodes. During entire period on ADT PSA undetectable (<.015), then took an ADT "holiday" a year ago. Undetectable for two months, then detectable and climbing ever since. Waited until 1 month ago until PSA crossed the minimal .2 threshold for a Ga68 PSMA PET/CT scan (low level doubling 45-60 days--mighty quick and now .32 28 days after previous PSA). All local activity negative BUT 4 lymph nodes lit up around lungs/trachea (T0N0M1a but ambiguous, largest detected 6mm with max 7.4 SUV, no node enlargement). Idea was to allow developing tumors to show themselves so they might be vulnerable to SBRT, then return to ADT while still castrate sensitive. However, SBRT out because of tumor locations. Continuing holiday until mid-June when will do another PSMA PET/CT when tumors more advanced (SUV low, tumors small on last scan, plus nearly 50% false negatives at low PSA). MO (who is highly regarded at UCSF) does not believe I am painting myself into a corner by delaying going back on ADT and/or combo therapy while waiting for more definitive scans. Technically Stage 4 due to distant mets, but not yet castration resistant. He admits hope for a cure is past, managing and controlling likely best outcome until ADT fails and more aggressive tactics must be tried/endured.
So my question is should I be seeking second opinions now or hang in there a few more months until further PCa "progress". My MO is hoping to keep it under control with ADT, then combo therapy once it becomes castrate resistant with enzalutamide and/or other ARis, Abt etc. with occasional holidays if I can achieve undetectability again (I dread going back on ADT much less the more aggressive secondary therapies, docataxel, LU177 and the like).
That's a long non-answer to your question. My question, closely related to yours, boils down to 1) is it time for a second opinion and/or 2) start more aggressive treatment now to try and preempt more progress or wait until June for another scan then decide. Right now I am without symptoms except chronic fatigue (and the after-effects of ADT, many of which linger).
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Advanced recurrent PCa, rising PSA, 2 negative PSMA PET Scans
