I feel the same. I wasn’t expecting it to be that low considering I am not on any medications. I just sent a message to my MO and asked for a psma scan. I think no matter what the scan shows, I need to go back on ADT. I hate going back on it obviously.
I did an orch after two yrs lupron but stayed on a pill adt for over seven years . I stopped the pills 9 months ago . and my docs didn’t want me off it due to my k failure start with pc . Nobody wanted me to go back there again . I know some say monthly psa . I done tri-monthly this entire time . I’m thinking monthly could drive some unwanted stress in me . Plus I hate giving blood . Good luck !
Why would you go back o. ADT with PSA so low after such a long vacatión? Your thinking seems contradictorio. We go on ADT in order to bring our T down. You want to go back on ADT BECAUSE your T is down?
As my husband's doctor stated from day one, cancer cells will adapt and learn to survive and multiply even with low testosterone levels. At that point it is the PSA level and doubling time which becomes most important. Rising PSA means cancer is becoming more active and most likely spreading. Listen to your doctor about ADT.
Thats weird. I wouldn't worry about it much until the next test. It may be a test error. Are you sure they are both total T as opposed to free T or something like that?
I mean if and when the cancer progresses because treatment stops working. Then you have pain...as the cancer gets worse. Not just the usual discomfort from treatment side effects. But that's after exhausting the many treatment options available. It's great you are feeling good, a good sign!
I'll second and third getting a retest done. I could go on and on about Quest labs- one of the two big labs in NJ area. "Never blame something on malice that which can be explained by incompetence" should be their motto.
I've posted before about the two PSA reads done, on samples taken at the same blood draw, obviously the same day, minutes apart, processed in the same lab by the same technician, and giving results that were significantly different (more than 30% different.) Any time I see significant changes in a test result - it's time to start looking for what they screwed up, not what caused the change.
I have experienced a 10% difference in readings on the same blood taken the same day requested by two different doctors. More important than the actual number is the trend in numbers. The PSA velocity rules the day.
Yes - the trend is the most important thing. Mine has a velocity of zero, up or down. It wobbles between 0.17-0.21, the most prevalent ones have been in the 0.20 range for over 18 months now.
In 2020 you report pelvic and abdomen LNs on PSMA scan. You went on Firmagon ADT in Nov 2020 for one year. I am presuming that you had SBRT to the LNs at that time ( You don’t mention it in your profile.) Now, your testosterone recovered band your PSA is again rising.
This represents remaining sites of metastatic disease. It does not mean castrate resistance as it is not rising while on ADT with total testosterone of less than 50 ng/dL. The majority (2/3) of those with LN oligomets treated by SBRT have recurrence in nearby or distant sites within 2 years, unfortunately. If your PSA continues to rise at this rate it will be above 0.25 by next month and you could get a repeat PSMA scan to see if there is something appropriate for further treatment. Or if presumed to be more widely metastatic then systemic treatment, including ADT, may be needed.
Since you are not yet confirmably mCRPC, you will not qualify for some treatments including Provenge or Pluvicto. Lu177-PSMA treatments could be undertaken in Europe, Australia or India (self-pay). These appear to work better in LN only disease and with low tumor burden.
I have no idea why your T level dropped this month. Check what Free-T did.
your analysis is correct. I was not offered radiation before I started ADT in 2020. I don’t think I am castrate resistant. It must be a lab error or something else but I have no idea. I contacted my MO and they told me they will do the psma before my next appointment in early June. I understand that ADT is in my near future. I had a defused disease in the LN in abdomen and pelvic that is probably why they never offered SBRT of some sort. The question is: at what level of psa should I resume ADT?
it was a test error. The portal results got updated to 704.
.19 is probably not high enough to scan yet. Try again next month, maybe it will go down. Its so hard to rely on one or two PSA tests. And the T fluctuating; I know this is a an unusual theory, but I wonder if it is the body trying to regulate itself against the rising PSA. and perhaps next month will be lower. I know that sounds like an unusual idea.
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