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.
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?
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?
Hello Seasid. Again, you question made me curious so I did a little checking for an SUV value in my past PSMA. Nothing rose to the level of concern. However, they did find an "ill-defined sclerosis of the anterior right fifth rib SUV 2.7". Did you have a previous PSMA result? Is that why you asked?
So to clarify, the PSMA SUV value I shared with you was not from the prostate area (but rather from a rib). However, this is what my original 2018 Axumin (was not a PSMA) report stated for the pelvic/abdomen area: Abdomen/Pelvis: There is diffuse radiotracer uptake throughout the prostate gland which is slightly more intense in the region of the right lateral apex with SUV 8.1 and at the left lateral apex with SUV 6.5. There is a prominent median lobe of the
prostate impressing on the floor of the urinary bladder with SUV 5.6.
Is your prostate is now considered healed from the cancer?
I am interested in the PSMA SUV Max value of the from the cancer heald prostate because I also had an SBRT radiation of my prostate and the radiation oncologist said that my prostate is now considered healed. I asked him to radiate my prostate again but he refused it saying that it would not help me with the cancer in my prostate because the cancer is now killed. My SUV Max value of my prostate one year after SBRT radiation therapy was around 5.5 or 6.5. the PSMA pet scan was interpreted like their is still a substantial cancer in my prostate and the parametric MRI finding correlated with the PSMA pet scan and the parametric MRI prostate specialist gave me a PIRADS score of 5 which points to a substantial cancer remaining in my prostate.
Unfortunately the RO said that he is considering that now I don't have cancer in my prostate.
Our member Brysonal also said that after radiation therapy of his prostate there was still on the PSMA pet scan some remaining residual SUV Max value leftover. His MO said that it is some remaining artifact after the radiation therapy. Do that is why I am so curious.
Brysonal didn't respond to my private message about the remaining PSMA SUV Max value of his prostate which is now considered as heald.
The RO didn't recommend a biopsy of my prostate saying that it is an unnecessary medical procedure which should be avoided in my case for the purpose of finding out if my prostate is now considered healed or not.
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.
Yet, SOC is a broad spectrum from sub-minimal to over-treatment, whilst offering providers legal protection (cover). As you say, Good Luck. Patientes estote Cave!
So being the "nice guy" that I am, I answered the poster's question with the stock answer (Standard of care). Had I known it would cause such angst I would have said it meant Suck On Cock. (Remember they say, Laughter is he best medicine).
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.
Interesting! Since this forum has members from Canada, Australia and England and other countries, I have notice in their comments that there is a rather unique bias to the SOC approach when compared to the USA standards. Seems our doctors have more flexibility regarding the SOC issue.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.