After a three Gleason 8 mri guides biopsy samples 9 years ag at age 56, I had a partial focal chryo To remove the cancer and surrounding tissue. Maybe a mistake but it’s done and zero side affects. Then about 2 years ago my PSA began to rise (from 4-6...remember I had 60% of a prostate still). My mri and biopsy showed nothing on my prostate so I did a c-12 acetate test (couldn’t qualify for psma test) to see if the cancer escaped the barn. It was in Phoenix and they found three possible very small mets (2 pelvis - 1 rib). I say possible because Dr Almeida thought they weren’t mets until he compared to a 7 year old bone scan at which time he says “90% chance it’s mets”. UCLA’s radiation department looked at the scan and said “highly suspicious for mets”. So I took an aggressive course with radiation to the 3 spots, 4 sessions of chemo and lupron , Zytega and prednisone. Also zometa with Celebrex. The kitchen sink so to speak. I’ve been on that regimen for over 20 months now with .02 PSA for over a year. I feel really good. Any way my MO (dr Scholz) and his partner (dr turner) and Ucla all agreed a vacation was a next reasonable step which I start next week. My biggest concern is that with a prostate still, my PSA will rise even without the cancer coming back, so hard to tell if it’s the cancer or normal prostate produced PSA. The thinking now is to do a psma test now for a baseline then retest every 6 months (or sooner if a big PSA spike ) to see if my vacation must end. Scholz and turner say that with my aggressive treatment, low PSA nadir, ogliometastic condition, they have seen long remissions (and dare we say possible cures). Any thoughts on if this is the best way to monitor? Also what should the psma test look like on my three lesions if they were cancer and what might they look like if they never were mets ( remember they only said “highly suspicious” for mets). Also, why would this regimen cause my normal PSA produced by my prostate to go to zero along with the PSA produced by my PC? Thanks guys!! This site is awesome.
Schwah
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Schwah
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I liked him and until the psma scandal became available he had what many considered to be the best scan. However now with the psma scam available to all his scan is not even in use anymore. A gentleman on this site who was out of options went to Almeida for a trial he was running (I don’t know the details) and he passed away during the trial. What exactly are you going to see Almeida for?
I stopped ADT in March after 15 months and SBRT to one met. It's an anxious time. Limbo. Waiting to see what happens. I was G7 (4+3, with tertiary 5) and had RP and radiation to prostate bed area.
For what it's worth, the doctor at DFCI is optimistic for lengthy PFS given aggressive treatment (localized and systemic) and low disease burden. He also tossed out the word "cure". And.. I did not do chemo nor do I take the Zometa... so I think your kitchen sink approach bodes very well for you.
I'll take a shot at some of your questions to get the conversation started...
Since you have a prostate, I believe they will look at the PSA doubling time once you begin to recover PSA. Hopefully, it recovers to a normal/expected value and never increases beyond that.
Presumably, if your three lesions were malignant and are now gone, the PSMA scan will not show anything (assuming you are PSMA avid so the test scan is relevant). I wonder if they will do another bone scan.
Interesting question about normal PSA. I too would think normal cells would make some PSA even with the therapy. Perhaps suppressed to the undetectable level by ADT?
So ADT also suppresses the production of PSA in normal prostate tissue, so it seems like your PSA might rise due to the remains of your prostate. Might be looking for a stable peak/zenith/apex (whatever official term they use for the opposite of nadir) in your PSA. Can your doctors give you an idea on when this peak may occur?
Totally relied on scans, Dopler and MRIs. I gained a lot of confidence in the mri when my random biopsy showed nothing 10 years ago (0-14) and my mri guided biopsy found 3-3 in the exact spot they saw. Very small area but Gleason 8. Dr Margolis at Ucla (who’s suppaided to be one of the best) felt pretty confident there was nothing there this time. I’d also done a number of earlier biopsies on both sides prior to my focal treatment to be confident there was no additional cancer. My original cancer portion was very small at the time and my PSA never did exceeded 10. Do you think I should do salvage radiation now or if it comes back even if no evidence of cancer in the prostate ?
I am a big fan of Daniel Margolis (now at Weill Cornell), but mpMRI, even in the best hands, has limitations. And, because of the multi-focal nature of PC, even small amounts of GS6 that were there 10 years ago may have evolved into higher grade tumors by now. I think your planned PSMA scan will help. There's some evidence that ADT makes PC more PSMA avid, so if there is anything there, maybe it will show up. (If you don't mind traveling, I think the PET/MRI at UCSF would give you greater precision than the PET/CT at UCLA).I think that will give you more confidence to take an ADT vacation. But I think that your cue to go back on ADT has to come from another PSMA scan (and/or maybe Cellsearch CTC), and not just PSA. I'm hopeful you can get a 5 or more year vacation, or even a lasting remission.
Thanks as always TA for your thoughtful replies. I’m a little confused on a couple of things you said tho. First, when you suggest the “Pet/Mri at Ucsf vs the Pet/Cy at ucla” , are you suggesting I do pet/mri now in addition to or on lieu of the UCLA PSMA SCAN? Is it a better scan or just a good supplemental scan ? And are you suggestioning I do that same scan later as part of my monitoring program while on vacation ? I thought the PSMA scan was the best state of the art in scans? And what is “cell search CTC”? I’ve not heard of that ? Finally I considered the PSMA Scan now as a baseline. Do you think something could show up now with .02 PSA?
Thx again TA. You’re an awesome source of information!
1) The UCSF PET/MRI would be instead of the UCLA PET/CT. There are only a few PET/MRIs in the US (Stanford has one too). I have no idea if they will allow you to pay for it, but you can ask. It may be able to pick up stuff that a PET/CT can't. There is really no point to a "baseline" for you, is there? If you see something, you intend to treat it.
2) You have treated your already low PSA by zapping your known metastases, so all the research on the relation between PSA and sensitivity of PET scans is useless for you. PSA will no longer be a good indicator for you because all the data on the relationship between biochemical progression (and PSADT) and survival no longer applies. That means you will have to rely on radiographic progression as your better early indicator, or perhaps CTC.
3) CTC (more than 5 cancer cells per 7.5 ml of blood) is just another early indicator of progression. By the time you're ready, the cost of cell-free DNA testing will hopefully come down.
If the PSA increases above a “normal” value/range or there is a high PSADT, isn’t that an indicator that something must be going on in addition to the normal expected PSA? That would be the signal for scanning.
PSA is used as an early indicator of clinical progression. By treating PSA, you lose the earliness. By the time it gets high or PSADT gets short, the disease has progressed a lot more.
Thanks. I see what you're saying, but they weren't "treating" PSA. It was merely suggestive of the need to scan and and decide what next. It was focal treatment - SBRT for suspected mets; and systemic treatment for whatever else might be there. Once off the meds, they aren't treating anything.
I believe the SOC during an ADT vacation or after stopping ADT for long periods of time is to measure PSA. Relative changes, PSADT, etc... before deciding on scans. Do you suggest that's an unnecessary test and there should just be a scanning protocol instead? Wouldn't a short PSADT be a proxy for disease progression before it gets too far?
If you are talking about Schwah, he was indeed treating PSA by zapping only the mets that were putting out the bulk of his PSA, as I said in #2 in my response to him. None of the PSA tests have been validated for use after such treatment.
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