Sorry to hear about your sister. You make a good point and it's one I've told friends and family when they ask how I'm doing. I tell them so far so good but the worse thing about this disease so far is that for the rest of my life I'll never know if the cancer is truly gone and never coming back. The common 5-year remissions = cure is a bunch of BS in my mind with cancer in general. It's an odds game. A lot of people (without cancer) think, they cut it out and your tests are good a few years later so it's all gone right? Unfortunately maybe not and that's hard to live with in the back of your head. I have a new found respect for the mental fortitude anyone diagnosed with cancer has to have LONG TERM.
Because the progression with PCa can be so slow it's not like a life attitude altering, near death experience, type of thing. In general I think when we are young (like teenagers or in our 20's) disease and death are not even in our mind's picture. At middle age, being diagnosed with cancer, even one of the most treatable ones, the foreboding of potentially going through more aggressive therapies and having a chronic disease the rest of your life is quite depressing and anxiety causing, especially waiting for PSA test results. I am slowly with each passing month trying to reframe my perspective about having the diagnosis and mortality in general. So far, it has had a far greater negative effective on me psychologically than physically. The pee bag and couple of months of significant urinary incontinence weren't fun but that's just a drop in the bucket (no pun intended) of eventually being on some kind of treatment for the rest of your life.
This diagnosis has really put the fact that something is eventually going to get me right front and center in my mind at my middle age. A massive heart attack in my 80's would be a blessing in disguise for me and my family relative to all other other things that could take you. Especially the slowly progressive neurodegenerative diseases.
Sorry I've gone off track a bit but I'm finding the discussion in this thread both informative and comforting. It feels better to discuss your situation with others more or less in the your same shoes.
But I'll be darned if I don't give it the "college try" to nip the problem at the bud if there's still a chance of doing that.
Even though this forum is targeted at more advanced stage, I've found the participants here to be far more knowledgeable in general than other forums discussing any aspect of the disease at any stage.
The comments on this thread all resonate with me.
1 - Tx: Having had BCR at 1st postop PSA of .19, I was "spared" some of the wait & worry because I was directed to the Rad Onc and salvage radiation together with 4 mos ADT.
Post salvage tx PSA in Nov undetectable at < .02.
Now, I wait and worry for the 2d post salvage PSA in Feb. And wait, and wait (as in Casablanca).
2 - emotional: If PSA remains undetectable for a period of years (as predicted by the optimistic Rad Onc), I will be very, very happy; but will continue to live with the dread of the "knock on the door" of recurrence.
And people do not understand the foreboding. I am a positive person, but when almost certain recurrence is in your future with G 9 and EPE, that knowledge or expectation is always present.
And yes, friends and family think removal/treatment = cure. And if I have "the big one, Alice", before recurrence, then effectively they would be correct. If not...
3 - protocols: Clearly unclear.
SPPORT trial suggests salvage radiation to the whole prostate area and pelvic lymph nodes together with ADT has good outcomes (Kevin, you were correct and ahead of the curve).
Salvage tx sweet spot of .2 to .4/.5 has been trending lower.
The belief (aah, that word again) that PCa remains in the prostate bed/lymph nodes in the absence of PSMA PET identification at low levels of PSA was the basis of salvage tx for me. Hopes and prayers 🙏 for all of us is all that I can conclude. And may treatment breakthroughs be on the horizon.
4 - PSA monitoring post salvage tx: Regular PSA testing with a < .1 sensitivity may make some practical sense. I am receiving uPSA testing, however 2 of my tx buddies, each with a different Rad Onc, are testing with regular PSA tests.
And when my PSA rises above .02 and is detectable, but less than .1, what will that accomplish other than worry me? Because unless we are going to treat below .1 ...?
A 3rd RP friend (no BCR in over 3 yrs) is freaking out because his PSA went from .00something to still .00something higher (you get the point).
And yes, it does feel comforting to communicate these thoughts, concerns and fears with brothers in arms in this battle.
Best to all.