These are my numbers 11 months following end of ADT
Meeting with Oncologist tomorrow
Comments welcome
12/5/23 <0.01 Last Lupron shot 27 months
2/17/24. <0.01
3/12/24 <0.01 Stopped all meds (Lupron, Abiraterone and Prednisone)30 months END
4/15/24 <0.01
5/15/24 <0.01
6/27/24 0.03 Testosterone had been consistently <7 since 11/5/21... until6/27/24 - 11
8/20/24 _ 0.04 _ T 12
11/20/24 _ 0.07 _ T 15
2/10/25 _ 0.14 _ T 41
Looks similar to my recurrence except my T came back to baseline in 3 months and the cancer came with it. I suspect depending on insurance you'll get scans. Once the see where the cancer is maybe SBRT and then wait and see if it's all coming from 5 or less spots that can be addressed. I am using my own path in that but let us know what happens. If your insurance is like mine, I assume it's better, you would have to wait until PSA hits 2 for a PSMA scan.
Medicare and Blue Cross, about as good as it gets. MO said he would ask for scan at 2.0 PSA as well as genetic test. Yes whack-a-mole with SBRT looks like it is in my future.
That would have been the case for me but I was told it was all or nothing and one of the Mets was too close to my esophagus to get a full dose so they said no go, just ADT. Based on your bio I agree your likely to not run into that issue. 🤞
(1) With Medicare, Medicare always makes the coverage decisions. The supplemental just pays.
(2) You don't want the scan until PSA 2.0. otherwise you risk a false negative.
(3) For the same reason when you do a psma scan you want to compliment it with a non-psma scan to pick up non-psma types of the cancer.
(4) Every time you do a psma treatment or scan, or any contrast agent for that matter, it takes a little out of your kidneys and brings you a little closer to old age dialysis.
It's something you have to do from time to time. But you don't want to over spend out of that bank account.
(5) It does look like it's returning. But patience saves the day. Monitor it and see where it goes.
With Medicare, they do not make any decisions. As long as the doctor approves the treatment, they have to approve it as well. Same with the supplemental. Advantage works a whole different way. It's like an HMO and that's a whole other story.
It really sucks, that you correctly had to mention insurance may affect treatment.
I guess we just have to stay on this stuff till we die . I asked my oncologist to give me my testosterone level with my next PSA, it seems like they simply go hand-in-hand up or down?
Or fly to Belgium and pay about $750 out-of-pocket for a PSMA-PET w/ the pyfluostat (sp?) (Aka F18) tracer, I don't like the gallium. Over the next few years competition will drive the price down. Only some European countries have access to it but the list is increasing. China will have access to it this year. When India and Thailand get it, then it'll drop to about $500 (my prediction). You can get PSMA-PET w/ gallium tracer now in India for about $400.
Add in the price of getting there and accommodations and it doesn’t look quite as good.
I don't trust any of those doctors sorry
Any specific lab/address in Belgium?
Your T has finally started to rise (a full year after stopping the drugs..) so a rise in PSA isn't unexpected. Given what research I've been able to find on T's effect on PSA after treatment, and after a sustained period of low T and low PSA - your number isn't a surprise to me.. but I would suggest asking for more frequent T/PSA tests - perhaps on a 6 week schedule. If your medical insurance won't cover that (it should - at least Medicare does) the tests aren't expensive so self-funding them might help give you peace of mind.
Since your primary treatment was radiation (I didn't miss an RP right? Sometimes I do..) it's not a surprise to see low PSA numbers as T starts to recover from the ADT. I'm currently on TRT - which so far I'm happy with the results even though my PSA has gone up - but that's a discussion for elsewhere..
I would start doing once a month.
I will thanks
my numbers are very close to you. Meeting with MO next months. I stopped trying to make sense of when and why the PSA started to go up. No one can make sense of that stuff except ONE thing, when T comes back, Psa goes up.period
when T comes back, Psa goes up
Right on , just want T to rise faster. 
So far so good for me. T rising but not PSA.
I have been blessed. Gleason 4+5. Clinical trial of Lupron, Zytiga/Prednisone and Niraparib for 6 months; SBRT at 3 months with no ADT vacation during RT. T began to return to normal following ADT. PSA rose from less than .01 to .06 over next 6 months and stabilized. T returned to normal levels over next 12 months. PSA rose to .09 at 24 months (different lab) and returned to .06 at 30 months. I am now on 6 mo monitoring and feeling pretty good. 73 years old
Upper table:
From the date that your T started rising, your PSA followed along with a PSADT of 3.3 months. The exponential regression coefficient of 0.995 doesn't leave much (any) room for randomness. My standard for a no-nonsense PSADT estimate is 5-6 time samples and here we have only four. So, I will leave a tiny slit of light into this dark wall.
Lower table:
Here, the linear regression provides a better fit (compared to the exponential) of the PSA to the T. This makes sound sense. I may risk a linear extrapolation. Say that your T will climb another 210 units to bring you at the lower normal T range (250). If current rate of rise is maintained your PSA then will be 0.14+ 210x0.00339=0.85. Repeating here that more time samples are better.
Interesting Justfor, thanks for taking the time to do the analysis. Assuming your #s are correct , if it were you, how would you approach it from here?
2-3 additional monthly PSA tests to strengthen up the validity of the existing 4 and in case there is no overturning change your PSA will then be above 0.2 which is my cut-off for PSMA scan. 2-4 weeks on Enzalutamide to boost PSMA expression and a latest breed of a digital PET scanner.
2-4 weeks on Enzalutamide to boost PSMA expression.
Could you elaborate on this or point me to some info on this.
Upon commencing taking Enzalutamide (possibly also other lutamides but the published data is for Enzalutamide) cancerous cells express more PSMA than previously, thing that helps detection. As time progresses, this effect tappers off nulling out any advantage There are at least 3 relevent papers, originating predominately from Europe/Germany with time frames from a fortnight to just over one month. Easy to find them if you Google it.
Good info if accurate. Of course, spreading that info doctor by doctor will take decades.
1) "Influence of androgen deprivation therapy on PSMA expression and PSMA-ligand PET imaging of prostate cancer patients"
link.springer.com/article/1...
2) "Rapid Modulation of PSMA Expression by Androgen Deprivation: Serial 68Ga-PSMA-11 PET in Men with Hormone-Sensitive and Castrate-Resistant Prostate Cancer Commencing Androgen Blockade"
jnm.snmjournals.org/content...
3) "Prospective study on the effect of short-term androgen deprivation therapy on PSMA uptake evaluated with 68Ga-PSMA-11 PET/MRI in men with treatment-naïve prostate cancer"
link.springer.com/article/1...
4) "Upregulation of PSMA Expression by Enzalutamide in Patients with Advanced mCRPC"
mdpi.com/2072-6694/14/7/169....
5) "Enzalutamide Enhances PSMA Expression of PSMA-Low Prostate Cancer"
6) "Combining enzalutamide and [177Lu]Lu-PSMA-617 in metastatic castration-resistant prostate cancer"
thelancet.com/journals/lano...
7) "New insights in the paradigm of upregulation of tumoral PSMA expression by androgen receptor blockade: Enzalutamide induces PSMA upregulation in castration-resistant prostate cancer even in patients having previously progressed on enzalutamide"
Wait, you still have a prostate, right?? Then PSA numbers are not necessarily PCa.
It has been nuked, 20 sessions of IMRT in July '21
There must be a reason for BCR defined as nadir + 2? I thought radiation doesn't "kill" all non-cancer cells.....
Check with TA, but I think he commented recently that a nuked prostate still produces PSA. Double check that with him, though.
If only 20 doses what gy did you get? Did you get whole pelvis or just the prostate?
Whole pelvis as there was some in the 2 adjacent Lymph nodes.
Those memory questions are tough. My recollection is 60
Right, but it's still viable, the prostate tissue recovered, but the prostate cancer died. You'll still have PSA readings.
Just 20 doses of radiation. Could it be your prostate emitting something naturally?
My husband got 20 too. Originally it was 40, but after markers and scan to mark up radiation it was switched to 20. Explanation was same amount of radiation in total with less times but higher doses. His radiologist redid the whole plan because he thinks it is less damage to other organs. SE were pretty bad after second day big problems with urination, Flomax was added in double dose, severe diarrhea even with Imodium from second week. He was able to have some energy first half of the day, so went to gym every day. Last week of radiation and 3 weeks after was not able to exercise at all, lost weight and had hard time eating. Then slowly started to recover. At 8 weeks now. Gaining his normal weight back, eats okay and back to gym every day. Some minor issues with urinations, improving slowly.
So if and when you get PSA 2, (looks like around end of year), you restart ADT.
You are where I was 12 years ago.
I will join the choir of when T rises so does PSA if you still have a prostrate. I am now back to my pre Lupron T value of 700 and my PSA has been bouncing around almost like yours. My Nov and Dec readings were just like yours 0.06 and 0.11.
Neither of my MOs nor my RO and GP even batted an eye. Comment was PSA will rise and bounce around. Get over it. See you in 6 months and RO said see you in a year. Enjoy your skiing and that is what I am doing.
New snow coming on Thursday.
what were the side effects? My oncologist wants to put me on that and next week.
In much the same boat, drug holiday for a yr now, slight rise in both T & PSA, asked for every 6 wks PSA, mostly for my peace of mind, still have a prostate so no need to freak out, but love these back-and-forth posts. Comforting in the long run. Stay safe all.
You still have a prostate so your prostate will create psa. Same as my situation. I've been doing intermittent orgovyx and focal protons since 2017. My onc at city of hope, as well as my rad onc at California protons, recommend PSMA once my psa reaches 0.5. Both agree waiting until 2.0 is too long and dangerous. PSMA sensitivity is good at psa levels above 0.5 and excellent above 1.0. Each time my PSMA has located Mets at a psa of 0.5.
Both the oncs mentioned above are considered to be the top of their respective fields, and each agree 2.0 is too long to wait in my case.
My initial post treatment psa nadir was 0.5, so in my case it's probable anything above that number reflects cancer activity.
Hope this helps
Dang, Scout. Disappointing. That’s around a 3 month PSADT. Consider waiting until above .20 and getting a PSMA PET scan. Keep your powder dry, amigo. Paul
Thanks Paul nice to hear from you. Have not seen any updates on your situation, how are you doing?
Since you still have a prostate (I see that you were on active surveillance and ADT from your BIO), you may expect to have some PSA rise when testosterone comes back. The rise might be only from your prostate and not cancer. Especially with a Gleason score of 6. Just some thoughts...
I didnt see a PSA doubling time calculation. mskcc.org/nomograms/prostat... Sometimes means something. Wish you well.
I could add to what’s already been said , but it’s good to know you are still picking the daisies instead of pushing them up buddy. You still the cool - dapper doooode. I never go on vacation, this to miss the disappointment when things wake up again Rotflol. I just keep punishing myself instead. 😁
Anyway things look well managed there big guy, you’ll prolly have to come back to our world here but you are still looking good there. That’s always comforting.
❤️❤️❤️
3year Updates w/PSA Graph
Genetics tests: Genetics tests-what suggested for G9 mCRPC with low PSA, failed Zytiga
Why is my testosterone increasing when my PSA is decreasing?
