I’m having ADT (Firmagon) after being diagnosed with BCR. Nothing seen outside of prostate by a PSMA…
I don’t want salvage treatment because of toxicities after having had external beam radiation. If i continue with firmagon i will be having side effects. I am thinking that i will just continue having side effects with more ADT and whatever may come next…I am wondering if i could stop the hormone therapy and wait until there is metastasis. I would appreciate some feedback…
Thanks
You're in a kind of No-Man's-Land. There are no SOC options. Some wait to begin ADT until PSA reaches a certain level or the doubling time is rapid. If a met appears on a bone scan/CT, it is a good indication to start ADT. Some would begin when a met appears on a PET scan.
The other approach is to do a short (less than a year) stint of an advanced hormone therapy. This approach seems to delay progression in trials using Zytiga, Erleada and Xtandi.
Thanks T_A …Having atrial fibrillation taking more ADT could be a problem. There seems to be no easy solution to these circumstances. I am not sure how my RO would respond to taking more ADT since my last PSA in February was .09
Hi Billy, I have Afib and I have been taking Lupron and Zytiga + prednisone. For a year with little impact on my Afib. Just my experience your mileage may vary.
Tylex,
Are you doing all three due to a recurrence? What were your previous treatments?
Bill
Hi Billy,
I have high grade G9 locally advanced 1 suspect pelvic node with Intraductal histology seen in the biopsy and BRCA2 mutation. So ADT plus Zytiga were part of my initial treatment plus HDR Brachytherapy followed by EBRT one month after HDR Brachytherapy. Currently 11 months from initial DX and 10 months since starting ADT/Zytiga/Prednisone. PSA currently “stable” ranging .11 to .16.
Hi Tylex, I overlooked that you have intraductal…The same with my dx. Even though i had originally a gleason 6, (back in 2004). At some point i got intraductal. It wasn’t found until 2021 when i had a biopsy and MRI and they found a tumor in my prostate, it’s a BCR. How are you doing recently…Thanks, Bill
Currently doing pretty good; PSA at 21 months was 0.05. MO wants to stop ADT and abiraterone at 24 months after scans and then follow closely. Hoping for a durable response but nervous about stopping ADT.
Have you had any SE’s ?
Yes Hot flashes, osteopenia, psychological challenges mild depression ,anxiety mood swings overthinking and rumination.Plus the usual sexual side effects. Loss of energy, decreased mental agility. Despite all that Iam still here with a decel QOL most of the time.
I am glad to hear your positive attitude. However, The SEs of ADT are difficult and i only had 6 months of it as of now….The one bit of information that i understand about intraductal, according to Dr. Patrick Walsh’s book, is that the “intraductal cancers spread in ducts within the prostate and don’t venture outside the gland…” Doctors have told me nothing “ …Curious to know, if any, information you have learned from doctors, etc.
Thanks
Hi Billy, Same boat here. Talk Allen’s note sums it up. There are a few of us in this situation. I’m getting an update and opinions from my oncologist on Wednesday- but expecting it to be intermittent ADT. Good luck.
Hi PG,
In reading some of your posts and seeing that you feel fine, i understand you wanting to seek different opinions and recommendations…Besides more ADT, i am wondering what would be any possible treatment options for you? More radiation?
I was diagnosed at 54 in 2004 and now 71. It’s been a long journey…I had a 1.6 PSA last February and wanted to have a biopsy and MRI. (After my primary treatment being external beam radiation, the PSA s are looked at differently)…
Detected was a lesion in the prostate and they recommended salvage HD brachytherapy…I have said no so far due to it being more radiation… The PSMA showed nothing outside of prostate.
Even if the PSMA is reliable i don’t want the prospect of any toxicities…So i am assuming that i will be on some kind of ADT for awhile…
I am interested in hearing what the oncologist will say to you on Wednesday…
Thanks…
billy1950 wrote --- " ... I was diagnosed at 54 in 2004 and now 71. It’s been a long journey…I had a 1.6 PSA last February and wanted to have a biopsy and MRI. (After my primary treatment being external beam radiation, the PSA s are looked at differently)... "
I am a bit confused --- were you not diagnosed as *GLEASON 6* ?? AND if so what exactly is your concern when a growing number of PCa doctors world-wide are considering GL6 to be indolent and thus not likely to metastasize causing death by PCa ?
I apologize if I am missing (ignorant of) something but isn't Active Surveillance for Gleason 6 becoming a Go To treatment and not requiring ADT at all?
My GLEASON 10 right half of the prostate was cryo-ablated approaching 7 years ago and as of this AM there are no signs of it having returned but then again, the day has only just begun.
addicted2,
At my initial diagnosed they said i had PSA of 6.9 and gleason 6 before the external beam radiation…That was in 2005..
All was fine until my PSAs were climbing during the last few years from 2018 to 2021. (from 1.2 to 1.6)…
I had the biopsy and MRI in 2021…They found a lesion in my prostate and nothing outside per PSMA. However, what i didn’t say is that some of what was inside (just on rt. side) was intraductal (an agressive form of cancer). With the gleason scores - some 3, 3, some 3, 4 and some 4,3…
The recommended treatment at Memorial Sloan Kettering is salvage HD brachytherapy. Since i don’t want the possible toxicities from having more radiation, i am on firmagon for the time being.
My concern is if the cancer is non-metastasic, ( and localized) why should i continue with any kind of ADT. And to wait it out. …
As we know, there are side effects to ADT.
Hope this clarifies my situation.
I appreciate your response as i do with others!
Bill
Thanks. I’ll certainly let you know. I don’t know if I am overreacting, but after getting the “you’ve got cancer “ message 3 times now I’m trying to be more thorough.
Since I am feeling good and strong now I have been wondering if I should hit it hard for curative intent - chemo, xofigo, adt+ advanced. I am pretty sure just adt will take the PSA to zero for a good while, but I gather this is just buying me time and eventually castrate resistance will come.
So this is what I’m thinking. Or overthinking??!
Anyway, made appointments for a few other opinions over the next month.
PG, I think it would be good to clarify with a doctor before starting more aggressive treatment what the curative prospects are…In other words, Are the additional treatments going to lead to a cure?
Hope to hear what the doctor/s says about this.
Bill
DG,
Did the doctor on Wednesday offer any different suggestions? Anything different!
Bill
No, Billy, alas it was another rushed meeting and her comment was that I don't need to "rush into anything" as nothing was detected from the scans. She didn't think the doubling rate or overall level of PSA was too worrisome at this stage. Added that there is a whole range of medicines still available, hence a suggestion that I wait and consider a HIF-2 trial that is about to open up, but frankly I have few insights yet on HIF-2. I've scheduled a few second opinions over the next month and will go from there.
Whenever uncomfortable with any physician on your team I recommend a 2nd opinion by thesecondopinion.org/for-pa... choose by research someone within your traveling range. Insurance generally covers any legitimate 2nd opinion.
You need to feel comfortable with your knowledge level, your physician team, and expected range of treatments. If any doc blowing you off it is time to change.
2Dee
You need to be a California resident or have a close relative who is a California resident to use the program.
Sorry I forgot to mention that.The premise is still in effect though.
Feel confidant with your team.
2Dee
TIMING questions for a multimodal approach oligometastatic PCa with CVD
PCa Recurrence Treatment Advice
Non standard Firmagon dosing effective for 3 months from single injection.
Supplements for metastatic prostate cancer 
Orgovyx
