Recurrence after prostatectomy - Advanced Prostate...

Advanced Prostate Cancer

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Recurrence after prostatectomy

Fred312 profile image
22 Replies

I have a relative who had surgery 6.5 years ago. Pathology was very favorable, 3+3+tertiary 4 i.e. less than 5%, no pos margins, no ECE, no nodes. He remained undetectable for 6.5 years, but now is .07 verified.

What would SOC be for him? Prostate bed or wide radiation, length of ADT, just Lupron or multiple ADT?

I also had prostatectomy, 3.5 years ago and wondering what's in my future.

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Fred312 profile image
Fred312
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22 Replies
KocoPr profile image
KocoPr

Any genetic tests done on either of you?

Fred312 profile image
Fred312 in reply to KocoPr

Not on him, he's my uncle. I did have the Myriad Genetics test which was normal except for a VUS in a gene called RNF43. The test lists this gene being associated with colin cancer. I've had zero polyps in surveillance. His father, my grandfather, also had PC in the seventies and died of it, caught very late before PSA times. My PC was 3+4, surgery 3.5 years ago, so far so good. Next PSA test in a week. Yes, I'm worried there's a bad gene, but it might be unknown? Maybe there's a more up to date test?

KocoPr profile image
KocoPr in reply to Fred312

They are always adding new genes to the tests. After 5years biopsy slides are degraded enough to not get complete genetic testing.

Tall_Allen profile image
Tall_Allen

No, too soon for any therapy. He can safely wait to see if his PSA rises above 0.2.

MarkWakely profile image
MarkWakely

My PSA briefly went from .01 to .1 in 2017 (about six years after my surgery) but then went back down to .01 and has stayed there ever since. All my doc did was go back to testing my PSA level every six months instead of once a year for a couple years, just to be on the safe side. There was no additional treatment. Should mention that I was taking a B12 supplement during that time since I have a low intrinsic factor, but now I eat foods rich in B12 (like salmon) instead of popping a pill. There's evidence supplements like B12, folic acid and folate can raise your PSA, as can certain herbal supplements. Has your uncle started taking any new supplements recently, such as megadose vitamin pills? Does he eat food heavily"fortified" with vitamins? If so, he should stop and see if his PSA settles back down. Here's a link to one of many articles that warn about the dangers of B12, folic acid and folate:

jmedicalcasereports.biomedc...

ron_bucher profile image
ron_bucher in reply to MarkWakely

A "study" of one single patient seems like an oxymoron, but congratulations on your PSA trend.

When I temporarily stopped B12, my PSA started to increase. One of my oncologists said unequivocally that excess B12 is not harmful.

MarkWakely profile image
MarkWakely in reply to ron_bucher

Thanks for your encouragement. My oncologist suggested I steer clear of all supplements, and wasn't happy about the B12. It could have been a coincidence that when I stopped B12, my PSA sank back down to .01. On the other hand, here's another warning about B12 backed up by studies with thousands of participants:

prostate.net/can-vitamin-b1...

KocoPr profile image
KocoPr in reply to MarkWakely

Good that you research it but i never listen to any MD doctor about supplements or nutrition. They are simply not trained in that.

MarkWakely profile image
MarkWakely in reply to KocoPr

Very true. Here are a few articles that back up that claim. B12 was the only thing I was taking at the time and there was just enough evidence to suggest that in my case it was proving to be detrimental. Since there are different types (and sub-types) of prostate cancer and we all differ in how our immune system fight (or fail to fight) the disease, it's not a surprise there's no consensus on the use of supplements in the treatment of PCa. The same can be said of drugs. One drug will be a game-changer for one patient and a complete failure for someone else. We all respond differently.

healthday.com/alternative-m...

pubmed.ncbi.nlm.nih.gov/229...

pubmed.ncbi.nlm.nih.gov/302...

ncbi.nlm.nih.gov/pubmed/287...

pubmed.ncbi.nlm.nih.gov/127...

Fortran1958 profile image
Fortran1958

I had surgery 8 years ago with a a composite Gleeson 4+3 and clean margins and no nodes and stage pT3a. Undetectable PSA after op. At 5 years I was 0.05 and 18 months later 0.2.

I then had PSMA Pet scan. Non definitive issue so then did another PSMA 6 months later to look for a change. There was no detected change but still rising PSA. Included in a study using a different isotope for PSMA. Nothing found even though I was then at 0.33 PSA.

My PSA continues to rise at a slow rate. I am now at 0.44 a just saw urologist. He wants to wait until I hit 0.6 before next PSMA scan.

My point about all of this, is that even though 0.2 appears to be the generally accept threshold for recurrence, it may still be undetectable at that time.

ImaSurvivor1 profile image
ImaSurvivor1 in reply to Fortran1958

Yes. The PSA can creep up quite a bit without anything showing on the PSMA PET/CT. I had 4 of them over 2 years including the FDA approved Ga68 and experimental Cu64 isotopes while my PSA crept up from 0.5 to 2.0, and nothing lit up on any of the PSMA PET/CTs. It was only when I got Covid last April, which, apparently knocked down my immune system, that my PSA jumped from 2.0 to 7.7 in a 3 month period that suddenly the scan showed several metastases.

Fortran1958 profile image
Fortran1958 in reply to ImaSurvivor1

That is interesting to know about your Covid experience impacting your PSA. I must say it is a bit of a double edged sword having a rising PSA, but nothing being detected by PSMA. On the one hand it is good not to have an explicit indication of Mets, but it is also concerning not to have a target for some definitive action to address.

ImaSurvivor1 profile image
ImaSurvivor1 in reply to Fortran1958

Fortran 1958. I was just trying to show how Covid apparently knocked down my immune system and turned the cancer loose in a period of only several weeks. Actually, I did get another PET/CT when my PSA jumped up after my "COVID cruise", and it showed metastases in too many areas to treat locally. So, I went on ADT (Firmagon and Xtandi). It worked great for only a few months. So next week I go back to the medical oncologist to develop plan B.

Fortran1958 profile image
Fortran1958 in reply to ImaSurvivor1

All the best to you for a successful Plan B.

Grandpa4 profile image
Grandpa4

I had a very similar situation although my Gleason score was much worse at 8. I watched the PSA number for a year while is slowly climbed . When it got above 0.2, I had a PMSA scan that revealed a ? Rib lesion. They decided it was a false positive and radiated me and gave me ADT and Abiraterone for 2 years. Repeat PMSA scan at 3 months was negative. I am at 2 years now just coming off therapy. Crossing my fingers. The good news is that my quality of life on these medications was great. I lifted weights so I would not get weak and exercised a lot. I had no fatigue. Lost all interest in sex but honestly, I did not miss it.

lowT163 profile image
lowT163 in reply to Grandpa4

Can’t miss what you don’t care about and low testosterone makes sure you don’t care.

Geno2853 profile image
Geno2853

Gosh. Mine is up to .51. Both my urologists say wait until, or if, it rises to 2 before ADT.

in reply to Geno2853

Speak to your MO again. 2 Is for guys that still have a prostate.

.2 is for recurrence after prostatectomy

evergladesbear profile image
evergladesbear

Get another PSA. Wait till approachers .1 “if” still climbing. Then PET Scan. Identify location of reoccurrence and discuss with radiation oncologist best “least” invasive treatment.

Cackalacky_cyclist profile image
Cackalacky_cyclist

I think the answer to your direct question (what’s the SOC for this particular scenario) is 4-6 months ADT and radiation to the prostate bed once the Drs. declare BCR, which is typically when PSA rises above 0.2 but could be earlier. Radiation to the pelvic area is also possible but RO’s normally won’t without a good reason (scan data).

ron_bucher profile image
ron_bucher

My post-RP salvage radiation of the local area (without any ADT) gave me 7.5 years of undetectable PSA.

RMontana profile image
RMontana

You are a long, long, long way from recurrence...PSA of 0.07 is very low...the most important thing going forward is the PSADT (doubling time)...that is much more important than PSA total...take a look at this post. When or if your PSA every reaches a point of concern then move forward with detection, i.e., PSMA PET...but you are a long way away from that right now...Rick

healthunlocked.com/active-s...

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