Gleason 9 at diagnosis, BRACA 2 germline and somatic. RP five years ago but cancer escaped the capsule; PSA of around 2.5 after surgery. Had radiation to pelvic area a few months later along with Eligard injection. Renewed Eligard after 3 months and PSA went down to undetectable. T was close to zero. Stayed that way for two years then my T started to gradually increase to around 32 and my PSA stated going up. PSA went to 2.5 and my Johns Hopkins doctor said "I needed treatment." Had another Eligard injection and PSA dropped back to undetectable. PSA started going up in August, 2023 and has gone to 3.7 as of January 2024. Had PSMA scan in December 2023 and it was negative. My T is still low at 32 but has increased from close to zero. Because my Johns Hopkins MO moved to Minnesota I decided to go to Duke since that medical school was close to where I live. My Duke MO has declared that I an NMCR because my T is low. But this is the same situation I was in a couple of years ago. He will not approve Eligard because he is fearful that the treatment may cause the cancer to morph (my term) into a cancer variant, such as neuroendocrine. Instead, he wants me to wait until my PSA gets to around 10. So I asked him, "is the theory that I will get treatment as soon as metastases develop" and he said yes. I am not sure I am castration resistant because my T has gone up but is still considered low by him. I am really conflicted right now and I do not know what I should do??
My MO suspects that I am non-metastat... - Advanced Prostate...
My MO suspects that I am non-metastatic, castration resistant but will not approve any treatment until metastases develop.
Balsam your question is so interesting. And if course because PCa is so complex, very involved! But these statements stood out: "He will not approve Eligard because he is fearful that the treatment may cause the cancer to morph (my term) into a cancer variant, such as neuroendocrine."
I'm two years in from diagnosis of high-volume metastatic (to bones only) PCa. So far so good via Triplet Therapy. But resistance lurks for all of us.
I hope we get some good discussion of your question.
What is your PSA today? Discuss the EMBARK trial. I know you're not BCR but in my opinion, who cares. Your non-metastatic and the EMBARK trial showed good results of keeping men non-metastatic. If you're PSA is < .2 then treatment holidays are allowed.
Of course, you could try a PARP given you are brca 2, which are the best responders.
My latest PSA is 3.7. Going up every month.
I too am BRCA2 positive. Lupron/Zytiga lasted 7 years 5 months. Now on Lynparza. Working good
The last thing to worry about is your cancer "morphing." We've learned that aggressive, earlier treatment extends life more, regardless of morphing.
We have 3 advanced hormonals (Zytiga, Erleada, & Nubeqa) now approved for non-metastatic CRPC. When metastases become detectable, a PARP inhibitor becomes useful.
Get a prostate mri with and without contrast and a bone scan if these have not been done.
Even though he just had a PSMA? For what reason? Not saying you're wrong.
Over the course of 15 months I’ve had 2 PSMA sans, both negative, (Pylorify and Ga). 2 prostate MRIs both which show new enhancing nodule in prostate fossa. RP 2016. Now rising PSA.
I had a Gleason 9 (5+4) diagnosis, stage 3 (locally advanced by MRI). Radiation and ADT as primary. With my dx, the eventual treatment if needed would be ADT. I'm not a fan of treatment "holidays" for aggressive cases like mine, so I also knew when it restarted it would be permanent. Even with a fairly serious case at dx, I never had a very high PSA. The highest it got before treatment was only 5.2 ng/dL.
A few years later, with normal testsoterone my PSA was indeed rising. Not fast, but when it hit 1.0 ng/dL, I decided to restart ADT. I just wasn't comfortable letting it just progress further until reaching some medical system/insurance coverage tripwire value.
I favor an aggressive approach with these high risk cases, but everyone has their own preference. Regarding doctor's opinions (and they are just that), doctors serve me. If they're not willing to work with me, I find another one. In my humble opinion, and I mean no disrespect, they are essentially "meat mechanics". They operate very much like an auto mechanic, though working on something far more complex. They follow diagnostic flowcharts, and execute "repairs" in very much the same manner.
Is there a reason you do not switch MOs? Sure sounds like you are unhappy with the current one.
I'v been on xtandi for 3 years with almost identical situation . Thank the good Lord , PSA at 0. I don;t like your Doc's attitude
I see "MO" used often. That does it stand for? Thx.
Glad you are not metastatic yet. Adding darolutamide to ADT would be my first choice. And would consider a few cycles of BAT if PSA rises on that. PARPi saved for future if mets appear. This is just one possible sequence. But and ARSI added to ADT definitely beneficial. daro would be my choice but many others do well on abi +p or enzalutamide.
Perhaps the term “metastatic” means different things in differing contexts. For me, conventional scans have never found mets, while PSMA has found very small ones.
But even if PSMA found nothing, we’d know (my MO and I) I’m micro-metastatic (likely systemically), since lymph node surgery in 2014 found 3 of 4 lymph nodes positive. And I would be doing the same thing I’m doing now — radiate what can be seen and then go to ADT+.
I guess my point is that if the PSA is rising, I would damn sure figure out why. After your RP, it wouldn’t be from BPH, prostatitis, etc, so diagnosis of exclusion = micromets. I would either convince my MO to hit it hard upfront (now) or I would change MO’s.
Waiting for the cancer to morph sounds like russian roulettte. It’s not just the morphing that we need to worry about - IMRUO (in my relatively uninformed opinion).
TYFYRUO...IHTFAAAMAIHMEW.
Good Luck, Good Health and Good Humor.
j-o-h-n Friday 01/19/2024 8:49 PM EST
I'm curious - why has chemo not been in the conversation?
I didn’t know that chemo was an option for treatment.
They say "Don't be concerned yet", I hear "Oh, crap"
Timing of Axumin Scan?
Stopping Zytiga after 6months
State of shock
Not undetectable any more
