BCR at 14 years. Salvage RT w boost, dementia concerns

[David1958]

Hard to believe. After radical prostatectomy, I did my PSA test every year with non-detectable levels until a few months ago it shows up at 0.4. did it again, just to make sure there was no error in testing, and it is 0.4 again. Doctor did a PSMA PET and found a small spot on one pelvic lymph node. At the time of my RP in April 2011, I was Gleason 3 + 4, pT3a, with some extra capsular extension but no positive margins. They had problems on my right side, because of lots of scar tissue from a previous hernia surgery. Tested two to three lymph nodes which were clear at the time.

I am suffering some mild cognitive impairment, with genetic confirmation of frontal temporal neurodegeneration (which runs in my family). So I elected NOT TO DO anti androgen therapy, based on latest publications about blood-brain barrier neuro-inflammation.

Who would have thought this would have happened after nearly 14 years?! Currently going through 43 RT sessions which includes a boost.

[Tall_Allen]

That sucks! It's a f**king sneaky disease for sure!

[DannyMan in reply to Tall_Allen]

Allen, (just replied to the most recent reply I saw of yours):

I am Gleason 5/4 non metastatic.

On my last few IMRT sessions (full pelvic per SOC).

On Lupron - get second 3-month injection this Friday.

I thought (very early on here) I came across a study that basically said 18 months of ADT with full pelvic radiation was as or nearly effective as 24.

Is this accurate?

I obviously want to be on ADT for less time, but I also don’t want to make any dumb decision so close to a possible end of this…

Thx in advance …

Dan

[gsun in reply to DannyMan]

As far as i have read, even 12 months is enough for your case. What I can glean, the longer you are on it, the longer the progression free survival. But that’s because you take it longer, not because it knocks out the cancer.Progression free survival would be even longer if you never stopped. In your case, being non metastatic, you could do shorter, IMO.

[Tall_Allen in reply to DannyMan]

The SOC for those getting external beam radiation is 26 months of ADT.

prostatecancer.news/2022/01...

The POP-RT trial had excellent results with 2 years of ADT in high risk men:

prostatecancer.news/2021/08...

[Spinel_Cutter in reply to Tall_Allen]

Great articles, thank you. " patients getting varying doses of EBRT or high dose rate brachy boost therapy (BBT). They found that 18 months is better than 6 months for BBT, but is there a duration that is less than 18 months for BBT?"

How about my future which is 3 months of orgo+abi, to shrink the protate, then followed by x episodes of IMRT followed by Brachy?

I hope to be doing that test that predicts aggressiveness, and I hope that I can stop the ADT at 12 months...

[Tall_Allen in reply to Spinel_Cutter]

12 months for BBT. It hasn't been tried with abi, except when positive pelvic lymph nodes have been detected.

[Spinel_Cutter in reply to Tall_Allen]

Thanks. Interesting, I was pushed towards Lupron + IMRT but I wanted Org+Abi + IMRT + Brachy. Gleason 8 with small extraprostatic extension to the pelvic sling (~5mm) no + anything on PSMA-PET. I consulted with Alicia Morgans at Dana Farber and she said what I wanted made a lot of sense, so I've gone with that. I intend to do decipher and let that determine if I stay on the meds for 12, 18 or 24 months. I was very impressed with the addition of brachy to IMRT. Though the 5-year survival was about the same, the the + brachy flattened out to 12+ years, while the non-brachy continued down. Maybe I'm breaking now ground with brachy....

[DannyMan in reply to Tall_Allen]

thx!

[Xavier10]

I mean, in some ways I guess the f@@*ker was nice enough to wait 14 years. But yeah, that's a drag when the enemy you thought you had conquered years ago pops back up. Seems like it must be a fairly non aggressive variant though so maybe this radiation will knock it back another 14

[stealthrider]

Sorry for your bad news, my father in law had biochemical recurrence at 10 yrs, NO PSMA PET at that time so they just radiated his prostate bed. Should have included pelvic lymph nodes as that is where is finally showed up. Good luck to you

[allie2020]

That is a bum deal to have a recurrence after 14 years. I have to believe it is a weak version of PCa to take that long. I had my RP in 2018 and all undetectable. I saw my Urologist recently about an unrelated matter. I said, 'it's got to be rare to have a BCR after 7 years.' He replied, 'pretty rare.' I again said , 'it's got to be rare.' He replied again, 'pretty rare.' That's the best I could get out of him. Best of luck with the radiation.

[tn12 in reply to allie2020]

I don't get it

[David1958 in reply to tn12]

He wanted to hear "real rare"!

[PSAed in reply to tn12]

Neither did the Doc. 😀

[allie2020 in reply to tn12]

Very simple. I was hoping my Dr. would agree that is is rare but he would only characterize it as pretty rare. Hopefully, you understand the difference.

[leach234]

isn’t extracapsular extension the definition of positive margin? pT3a means it’s broken through the capsule so isn’t that a positive margin?

[Gardenpests in reply to leach234]

pT3a here with 4 years undetectable PSA.

From Johns Hopkins.

T3: The tumor has grown outside the prostate. It may have spread to the seminal vesicles.

T3a: The tumor has developed outside the prostate; however, it has not spread to the seminal vesicles.

T3b: The tumor has spread to the seminal vesicles.

Here is a wiki illustration of surgical margin.

en.wikipedia.org/wiki/Resec...

[leach234 in reply to Gardenpests]

That’s not my understanding. pT3a means it has escaped the prostate and the tumor is only on one side of the prostate. pT3b means it has escaped the prostate and you have tumors on both sides of the prostate.

[David1958 in reply to leach234]

I believe you are right. At the time in 2011, my urologist seem to emphasize extra capsular extension without positive margin, but yet I see pt3a there right there in the postoperative report. After all these years, the details are not quite as sharp in my memory

[RJAMSG]

Congrats on the 14 years of undetectable but sorry to hear about that spot. It would be interesting to me to see your PSA results over time, mostly boring I'm sure but I would like to see them. I guess since it is at .4 not considered "early salvage", I almost wonder if it wasn't some Gleason 3+3 that has been hanging around and just slowing growing in that spot since it took so long. Prayers for your health! God Bless Rob

[drzaius]

Very disheartening I’m sure David1958. If there’s a positive in this it’s that radiation has improved in those 14 years and is much more accurate and effective and thus less side effects. Wishing you Godspeed.

[ManuteBol1]

Hello. Sorry to hear you are having a recurrence after all of this time.

Do you happen to be aware as to what testing threshold your undetectable tests were using over all of that time? Were the readings <0.1? Or <0.02? Or something else?

[David1958 in reply to ManuteBol1]

Every last one of them was non-detectable. And then 0.4, and things moved swiftly within one month

[ManuteBol1 in reply to David1958]

I get that they were undetectable, but what threshold was the test using over all of that time? A test being undetectable means it isn’t registering above the limit of sensitivity of that particular test’s assay.

[Mgtd]

Friend just a couple of months ago after 20+ years showed a PSA rise.

[David1958 in reply to Mgtd]

That is extremely rare.

[Boacan]

I am on a similar path as after 4+ years post RALP, and undetectable uPSA, the beast reappeared. My pathology was similar with pT3a and Gleason 3+4. PSA is .03 and repeat testing is .02 and so MO wants to monitor further before seeking PSMA scan to try and locate the “sneaky” SOB. I can only hope the it’s the non-aggressive variant and that salvage RT & ADT can put it back in the cage. Best wishes to all of us that are fighting this battle…

[David1958]

I am not doing the ADT because of the neurological considerations for me. My poor brain can't take more assault.