I need some guidance on next steps to deal with my recurrent prostate cancer. [Surgery for Gleason 4+3 March 2013, IGRT radiation concluding May 2016 with concurrent 6 months ADT)
In April 2018 I had a 18F-DCFPyl-PET/CT PSMA PET/MRI scan at NIH when my PSA was 0.5 and no cancer was detected. PSA continued to climb with doubling time around 10-11 months and I then had an Axumin PET/CT scan Nov 2019 at PSA 2.1 which did not find any cancer.
I would like to do another PSMA scan to determine where the prostate cancer is located and if possible treat with spot radiation. If treatment is not possible, then I will at some point progress to ADT.
Assuming I can get into a clinical trial in the metro NY area (there are 3 for which I think I would qualify for), should I wait until PSA is around 3 or even a bit higher before having the scan or does it make sense to do it as soon as I can get into a trial?
Should I care which tracer is used assuming the choice is 18F-DCFPyl or 68Ga-HBED? I read Tall Allen's summary of ratings of these and it appears the 18F-DCFPyl is somewhat better but perhaps not significantly better for my situation.
Is there any other next step that is preferable to what I have outlined? I am seeing my MO next week and will get his opinion and may seek a few other opinions as well. Does anyone know if Medicare will pay for multiple MO consultations within a short frame for the same condition?
Appreciate everyone's thoughts.
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Teddy28
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The 18F-DCFPyl tracer may be a bit better for very low PSA values, e.g. below 1.0 ng/ml. Above that there is no difference, at least most ROs believe this. This study reports the accuracy of a PSMA PET/CT scan:
As you can see, you have a chance of over 80% to see mets at a PSA value of 3.0 ng/ml. If you want to join a trial for non-metastatic PCa I would keep the results under wraps. All the other participants will probably just have a CT/bone scan which only shows a fraction of their existing mets.
By allowing your micrometatstatic, systemic PC to go untreated you are taking the chance that you are allowing it to progress. So waiting for a met large enough to detect becomes a self-fulfilling prophecy. There is no evidence yet that treating mets extends survival. There is evidence that reducing the net load of cancer cells with systemic therapy extends survival. Consider beginning at least some light kind of ADT - intermittent, maybe Casodex only.
PSA and all other blood work in 2 days for general health. It will be 1 month EXACTLY from standard 3 month interval PSA check and expecting a rise again :0(. If so, hopefully not a double like last check even though number is still low ---- BUTTTTT ???? >>>
TA - you make a good point - and I am aware of what you state. I was trying to hold off ADT for as long as possible and thought doing 1 more PSMA scan might be worth doing. I will discuss your point with my MO. Thanks for the insight.
Nalakrats - I had not considered monthly shots. I will discuss with my dr. plus the idea of when to start ADT. Previously 2 MO's advised I could wait until PSA 4 or a bit higher as long as doubling time did not shorten significantly. That is why I was thinking to continue the search for the cancer.
My husband is in the exact same boat as you, and Sloan Kettering told us to wait until his psa is 4 to repeat the psma scan. Note that if you go on ADT now in any form, The psma scan will likely not show anything, so it’s a choice between the 2 at this point. We are contemplating getting an intermediate psma scan, maybe in Germany. His MO is in agreement on waiting before ADT, as is his RO. My husband had the psma scan in 2017, which found one lymph node at psa 1.36, and Sloan radiated that in 2017, and he was psa undectable, without ADT, for over a year. So it stayed off SDT treatment now for 2 1/2 years.
Vany 4 - Thanks for your comment . What is your husband's PSA at the present time? Have you considered getting a scan at Sloan as part of a clinical trial?
His psa was 1.73 in December. He had a psma scan at Sloan as part of the clinical trial, in September, when his psa was 0.94. It showed 2 lymph nodes not avid enough for them to be sure, and then they recommended we wait until his psma is 4. We not exactly comfortable with this, but his RO said he didn’t expect major growth during this time.
Vany4 - An alternative test is an Axumin Scan - covered my Medicare. Not as sensitive as PSMA but perhaps used as an interim method to see how things are while waiting for next PSMA scan . Many places offer them. Have you considered?
Whimpy and others - I keep reading about risks of staying on ADT too long and so I am thinking it is better if I can delay starting treatment, which is why I thought perhaps if I was lucky, a spot radiation on one or 2 mets, if possible, would accomplish this. While the approach will not prolong survival ( I am 66), it will possibly delay start of ADT. Then again, perhaps I am misguided on this.
I’m no expert . Not a dr.... as a guy that almost kicked the bucket due to pc tumors I’d never recommend fear of Adt instead fear APC .. get the upper hand on this thing or it can put you under . 66 ain’t old for pc . Maybe even a bit early like me , I was 53 then , 58 now . If I didn’t hit pc hard with adt from the start , I don’t think I’d be here today . Side effects will come . But only if you’re here to receive them ... You’ll do what’s best for you .. it’s your life . Live well
.. these decisions are the hardest part . Follow pro advice . Save yourself any way that you feel fit . Take care Scott
I had the gallium 68 scan at UCSF in San Francisco in December… My PSA was .35 and they found two lymph nodes with 6 mm lesions. I think it’s troubling that your PSA is rising but nothing has been found… I would really recommend trying to get the gallium 68 scan!
I'd like to know what bean did also. My husband is in this situation right now too. If he wants PSMA he will have to travel somewhere because no one is doing them in Colorado that I am aware of.
So with a rapid doubling time PC is usually found on scans at lower PSA. Yours isn't all that fast. Also if cancer is located in one or fewer spots you should be able to find at a lower PSA than if it's at multiple spots. So the fewer the spots, the lower the PSA it can be found at, as it's more consentrated and less distributed.
My first successful finds weren't found at 0.5 or 1.5, but then were at 3.9 PSA, then IMRT pelvic killed all FIVE spots in pelvic.
PSA rose over more than two years to where a single lymph node was found first at 1.3 and three months later at 1.8 where it was found in upper pelvic which was in very sensitive area, so that area was avoided by previous whole pelvic radiation. I had the PSMA and MRI scans again because of how sensitive the surrounding area was and how the long thin lymph node was sandwiched in that area.
By the way, there were MANY choices of curative therapy (not just radiation), but the location of the lymph node was in a very sensitive area so it was narrowed down to cryoblation, and SBRT. Heat treatment had to be avoided, and surgery was in a had to reach spot, to be saved for later if necessary.
Again after consulting with doctors for each. It was determined that area was too sensitive for cryoblation, so SBRT was my best choice. Still great care in planning, and actual SBRT to avoid damage to other sensitive areas. I chose to have this SBRT performed at MAYO Rochester MN.
I had SBRT in November 2023 and am waiting to be scanned again this month, but BCBS just denied my scan, doctors are seaking reversal, we'll see what happens.
My PSA dropped significantly at 4 weeks, I will be getting a new ultrasenitive PSA in February which will be three months. We'll see?
In my case a PSMA scan in Oct 2021 found a few lung nodules. None could be biopsied because of their location or size. One larger one was too near the heart and too risky to biopsy. But having lupron and Enzalutamide for a year in 2022 was favorable. PSA went to undetectable in couple of months, and Testosterone went low as well. A CT scan could not find the nodules which were presumed to be prostate cancer. Note the PSMA scan did not find prostate cancer anywhere else! Small nodules that were present in 2019 in PSMA scan were not thought to be cancer - at the time it was hard to interpret PSMA scans which were still in clinical trial. Now more than 1 year after treatment PSA has started to increase again, going from less than 0.006 to 0.088. I expect similar doubling time as to what it was prior to Lupron / Enzalutamide treatment which is my case is about 15-18 months. MO says PSA can go up to 5 or 10 without concerns as long as Doubling Time stays long.
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