Its been a long time since I last posted anything mostly because things have been going pretty well and I preferred to think it would always be that way.
Its been almost 5 years since I was diagnosed stage 4 with a PSA of 172 and Gleason 7. I soon started with Lupron injections every 4 months and Erleada daily. I underwent radiation to the prostate only in Dec. 2020, improved my diet and started exercising fairly regularly. As a result, my PSA became undetectable (<.008) and stayed that way until Aug. 14/23. Since then there has been a steady increase as follows: Nov. 17/23: .009; Dec. 20/23: .010; Jan. 17/24: .013; May 27/24: .022; Aug. 12/24: .029; Nov. 15/24: .047 and most recently, Feb. 21/25: .073. I think its time to consider what to do next. I am 76 years old, feel good (except for the brain fog and fatigue) and have recently had negative CT and Bone scans.
Any thoughts on what I should do next as I seem to becoming castrate resistant. My oncologist is proposing an early PSMA/PET scan (if she can get it approved) with the potential for spot radiation after which, when things deteriorate sufficiently, chemo and Pluvicto.
Any comments will be greatly appreciated.
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Squirrel71
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Hi Squirrel71, I think your Oncologist is correct in attempting to get you approved for an early PSMA/PET (0.2) though the thinking is the higher the PSA the more sensitive the scan. <0.5 ng/ml: 38%
I had a similar case, with the following PSA levels:
12/20, 0.01
3/21, 0.01
6/21, 0.06
9/21, 0.12
12/21, 0.12
6/22, 0.41
9/22, 0.93
I had an MRI 9/22 for an unrelated reason and it showed a potentially malignant tumor on my spine. I went for a PSMA Pet scan and found widespread prostate cancer. Since then, have had chemo (docetaxel + carboplatin) and Pluvicto. Pluvicto has pushed my disease into full remission with undetectable PSA. If I were you, I would get the PSMA Pet scan. I have been on Lupron and Nubeqa since 9/22 and I don't see that changing anytime soon.
I'm with TA, that clinical data may indicate some activity, does it rise to the level of taking action, maybe not.
Fiddler2004 brings up the issue of whether or not a PSMA PET can locate recurrence at various PSA levels.
You will find others on this forum who advocate yes, image at the slightest increase, take action.
From my perspective and in concert with my medical team, we are comfortable with waiting for my PSA to rise between .5-1.0 and then image. Our assesment is waiting entails an acceptable risk tradeoff between not treating and the PCa gets out of control versus increasing the statistical probability of the PSMA PET scan locating recurrence and informing a treatment decision.
As an example, in April 2023, we reached that decision criteria, imaged, located a single PLN and together with my radiologist and oncologist decided on which treatment - SBRT to the PLN identified in the scan and 12 months ADT to manage micro-metastatic PCa. We had decision criteria about whether to add an ARI and whether to do >12 months or stop at 12 months. Based on those decision criteria, we come off treatment in April 2024, latest labs at the end of January showed ".03" which based on our decision criteria meant do nothing, continue to actively monitor. So, next labs in April, until then, just go about my life.
My situation is similar, after a similar dx and reaching an undetectable PSA for 6 years PSA became detectable again. Once it reached 0.2 I had a PSMA scan done that showed a tumor on o rib that I had treated with SBRT. PSA fell to nearly undetectable again. A year later same thing happened and PSMA scam showed a tumor on a different rib, again treated with SBRT and had same result. My MO, Dr. Sartor, uses 0.2 as the level to get a PSMA scan and says that I can continue to use SBRT indefinitely depending on tumor location and number of tumors. So far so good it’s been about a year and a half and PSA is holding at <0.2.
I’m not sure, I sent him a text asking about the rumor of him leaving Mayo and moving back to Louisiana but he did not respond to my question. He did respond to my text reporting my latest PSA however just like he always does so not sure of his status.
The large Oncology/hospital group I'm with has stopped reporting anything under 0.1. My results show >0.1. My MO told me that there is no reason to report all of those multiple digits as they would do nothing with the results. The PSMA wouldn't show very well and they wouldn't start any treatments while not knowing what they are treating. He also says that it reduces A LOT of stress by not being aware of those moves under 0.1.
I would rather live blissfully unaware if nothing could be done about it!
My PSa is steadily rising, although still low at .49. I asked for a PSMA PET scan and am getting one Apr. 2. I suspect my PSA will be a bit higher at that time. The reason was, I asked to see a RO (which has not yet been scheduled) to see if SBRT would be appropriate. We have government health insurance and I am very pleased how my treatment is going. I was prepared for the worst but it’s all good.
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