It is with sadness that I report that My "vacation" may come to an abrupt end . After cruising along with an Undetectable PSA for a little over 2+ years, my recent test results indicate a PSA of 0.03 and my Testosterone jumped from <7 to 13.
The good news is my T is coming back but it looks like my PCa may be reawaking as well. I recognize that small movements of PSA at this low level do not mean much but I would be happier to see <0.01
I did 30 months of ADT using Lupron and Zytiga + prednisone and with Oligometastatic diagnosis my MO and RO both gave me a 40% of a "cure". I chose not to stop ADT even though both my MO and RO said I could stop at 24 months. With a Gleason 9 Dx, I wanted to keep the pressure on the cancer as long as I could stand it. Unfortunately my lack of T was causing some emotional swings that threatened to destroy my beautiful relationship with Coco, something I found unacceptable.
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Time to consider my ARSI maneuvers. I know - I know - I know (thrice), 1st gen Bicalutamide is too passé for people at the other side of the pond, but you have a selection of three 2nd gen that are trending currently.
Happy Birthday! I have the same Dx, G-9 and 3 small lymph node mets. In 2 weeks I will be at 2 years ADT - Abi - P. Also had 44 IMRT. My local MO and MO at MD Anderson say I can stop. I'm going to go as I can't stand the way I feel. Since treatment started, my blood work has always been reported as <.1 and has been referred to as undetectable by my MO.
Hopefully you are a little premature with the "end of vacation" suggestion. I would think a rise in Psa is to be expected with a corresponding rise in Testosterone .
In my case I've had three consecutive PSA increases since finishing 2 years Adt (June 2022) plus EBRT , although I'm discounting the first increase due to a T increase also. However, with the other 2 increases there was no further T increase .
I realise I'm probably clutching straws regarding my situation , but hopefully you are still in the game with a shot at a cure. Best of luck.
I think psma is not reliable under 0.2.After a curative intent, if you still have a prostate they say that recurrence is confirmed once the psa rises to 2.0 but I think that when it reaches 2.0 it is because you already have Mets. I has a metastasis that was visible on a bone scan with a psa of 1.67. It might be prudent to get a scan as soon as you reach 1.0
Agree. PSMA Pet scan found two highly avid abdominal lymph nodes for me at a PSA level of 1.4. Treated with High Dose SBRT, 5 days to each node. PSA then dropped to 0.4. Next PSA test in Sept will be telling.
I have a note “ .1 to.3 Psa due to still having Prostate alone with T return. “ From PCRI but we are packing for a family trip to Kenya and i cant find exact quote right now. UroToday has charts on accuracy of PSMA scans at various PSA levels. Please let me know what you find.
At the time of my Dx, my PSA was 3.5. I was given my first ADT shot. By the time my PSMA scan got approved, 4 weeks, my PSA was 1.0. I to had read that 2.0 was the ideal number for very good results of the PSMA. During my visit to MD Anderson, I asked if the scan would have shown everything as my PSA 1.0. Both of my MO's said they were not concerned.
What we haven’t read is how much without it meaning probable cancer recurrence.
I am on my second mo and both have told me that the presence of PSA is not cause for worry in and of itself. We should start being concerned when my PSA doubles in 3 months.
I was on ADT (Lupron) for 2 years and PSA was undetectable. Took a vacation starting July ‘23, when PSA was <.02. PSA went from .03 in October to .23 in Jan ‘24. Lovely small numbers, but more than doubling in 3 months. So I started Lupron again. In May PSA was .76, more than doubling. I started Xtandi in mid June to augment the Lupron.
My mo said that we could wait 3 more months without worrying, but I want to be aggressive and he is willing to be as aggressive as I want to be.
Thank you for your heart felt update. We don't go through this journey alone and sometimes it is a rough ride for those we love as well. In the end, love is stronger than the cancer and always prevails. Sending positive energy your way!
I cite from the institute of pet imaging of south florida and urologytimes.com
"Generally speaking, PSMA PET Scans using PSMA (18F-DCFPyL) have been shown to be effective at PSA levels above 0.2ng/mL. Also generally speaking, the higher the PSA level (when restaging patients), the more likely a PSMA PET Scan is to detect and identify recurrent prostate cancer."
"And also, the other major point to just have in mind is in terms of the overall nature of the fluorine-18 and the fact that it may have some higher background bone uptake in some cases, and also the pitfalls. We need to consider that the fluorine 18–labeled compounds may show some more benign findings to have uptake."
I had a pet scan last week with psa between 0.05 and 0.06, it still showed the main metastasis, probably it missed the smallest ones but it would also mean that they are not as active as they were before (hopefully!), but I think 0.5 would be accurate enough
That seems like a convoluted way of saying “The higher your PSA, the more likely there is metastasis, so the scan is more likely to find something.”. No?
If you do need to restart treatment, discuss mono enzalutimide with your MO. I've been on it now for 6 months and I have to say, other than mild fatigue, I feel really good. I'm pretty active and I still work full time without any cognitive issues.I highly recommend getting the breast radiation as it does seem to be working for me.
Your T has a way to go since you're still in the castrate range... let's see what the next 3 months brings.
- PSA Nadir of 8 (with prostate). PSA hovering around 15 for the last 6 months or so
- No Oncology appointment for last 20 months. Little risky I know. I should get another PSMA Pet
- Lost probably 5lb's of muscle mostly because I injured my shoulder and have not been able to push large weights
- Waiting for the next health disaster, but feeling OK (considering no T). People still tell me they would like to be as fit (as I appear). I laugh to myself as my fitness level have dropped dramatically because of no T and anemia
I aim is to engage in the medical system as little as possible until necessary. Apparently a lot of sick people hang out in medical practices. Causation or correlation?
It does indeed sound risky Jac, but we all have to follow the path we feel best about. Keep in touch because we all learn from each others choices in the ongoing challenges we face. Quality of life is a very important consideration.
Amen Brother! Lack of T is a challenge even to the best relationships. I know the key is good communication, so far she has been understanding of my hormonal mood swings and continues to be committed but I know there is a limit to how much patience a person will have. I need to find a solution that works for us.
I think you are ovrerreacting. My PSA went up to .3-.5 after testosterone in higher amounts came on and no doctor I have is worried about it. I just had a PSMA test at .5 and it showed zero uptake. There is such a thing as benign PSA when you still have a prostate. Yeah, sure there might be some micrometastases hiding in there somewhere but the range of PSA in successful remission after radiation varies greatly.
the range of PSA in successful remission after radiation varies greatly.
Thank you. Very re-assuring to hear that. My current plan is to get PMSA Pet scan if it gets to 0.5. The idea of it staying undetectable was probably unrealistic, especially when accompanied with T increasing, even as little as it did.
Taking a deep breath and waiting to see what the future brings.
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T never recovered after ADT and 44 EBRT sessions. 
Conflicting POV from Doctors?
PSA rising. The trend is not my friend.
Does a biopsy of a recurrent LN will help in anything ?
