My PSA is low but on the rise. <.006 in January and .042 now. I'm not on ADT. See bio for history.
I hate to stand on the sidelines and watch it rise. Is there something I can do, or do I have to wait until PSA rises then have a scan?
What is SOC?
Your comments are appreciated.
Similar stage. Didn't rush to sRT keeping it for a later day. Self-experimenting with minimum effective dose of Bicalutamide (trade name Casodex). Detailed documentation here:
I learned to not wait, to not give this beast time and obscurity. My first 'something to do' is monthly/bimonthly PSA testing. In 2021, after my third treatment, salvage ePLND, when my PSA rose into 0.03X range, I began what has become annual mpMRI/PSMA imaging and liquid blood biopsy testing.
I am awaiting results from 'this years' imaging and GUARDANT360 CDx liquid blood biopsy. Hoping, presuming both come in NED (as previous years), I will be seeking comparative imaging with fluciclovine or Choline.
In my bio I have share a bit on diet and supplements - IMO nothing crazy. Also IMO I do not know how effective these may be but I like that six years post my salvage ePLND my PSA is holding 0.03X range for over three years now, no ADT. I also do extensive physical exercise; again not sure just how much this helps with cancer but I surely enjoy it.
If./when my PSA reaches 0.05X I will take additional actions. First, I hope to return to Europe for imaging that will not be available in US for undetermined time. If surgery nor targeted RT are not options, I may well begin ADT strategy - not defined at this time.
As for SOC, I am not alone in the understanding this is a misnomer, for it really is a very broad range of care, from the sub-minimal to the over-the-top, including over treatment. SOC's roots are legal to protect health care system and providers. Not that this is wong to do, again, IMO, we as patients need to appreciate. i.e., not screening and screening are within 'SOC'.
You could get an updated PSMA scan and see if there is a spot to radiate. Your PSA might not be high enough to show anything though. Other option would be to start Lupron and enzalutamide consistent with the recent Embark study results. I think your oncologist is trying to figure out the doubling time of your cancer now.
PSADT meaningful for levels 0.5 and higher.
You have to wait until PSA raches 1.0 or is very rapid. That is the SOC because there is no advantage to earlier treatment.
Being that SCreader’s PSA is now .042, I’m curious about something. Is your observation about waiting until PSA reaches 1.0 based on the fact that he has already had salvage radiation therapy so he should rely more on imaging tests like a PMSA? I ask because perhaps SCreader situation is different. I just completed my SRT and I am still in ADT. My RO recommended that treatment because of my biochemical recurrence to 0.3 PSA despite negative PMSA results. But again, I’m thinking SCreader situation is different now. Thoughts?
I am just curious. What was the SUV Max value of the PSMA pet scan of your prostate which was identified as a negative PSMA result?
A very interesting question. I admit that this number was not on my radar. In fact, I am not knowledgeable of it until you brought it up. I remember focusing on the content of the write up and discussing it with my radiation oncologist who confirmed the negative results. But I don’t recall looking at the specific numbers. I’m now curious to go back and see what I can find. what prompted you to ask?
No. It is because he has already had salvage radiation, so his goal now is maintenance, instead of cure, and there are no known ways of maintaining the cancer before PSA reaches 1.0 or is rapidly doubling.
why is 1.0 the critical value for maintaining the cancer?
Medicines for controlling cancer growth do not work when the cancer is senescent.
My profile states the success I had in a similar situation. I am really glad I jumped on it aggressively and quickly. It gave me 4+ years of undetectable PSA without any type of ADT.
I suggest you ignore advice that anyone on any forum like this may provide on what treatment(s) THEY think YOU should or should not have, especially when they have no idea what your age is. I consider their own personal experiences to be very useful information. But as soon as they go over the line into prescribing (or discouraging) any treatment for anyone besides themselves, I consider that to be irresponsible at best and potentially dangerous.
Standard of care (SOC) is a public health term that is essentially what the MD community consensus on what may work best for a large percentage of patients. Blindly applying SOC to individual cases is pretty old style medicine of the past, especially for advanced cancer. Every individual case is unique, so the best doctors practice personalize medicine and won't hesitate to use non-standard care if they think it is best for an individual patient.
looking for recommendations for top radiation oncologist in Calif or Mayo for second opinions.
Zanda after Zytiga
trelstar
