Jerry L. said...
Your version of PC is like mine in the sense that it gives off very small amounts of PSA, yet substantial, high grade disease. I would definitely monitor PSA, but I have found that I needed to find other ways to monitor progression. Unfortunately for me, it was (and is) through scans...but some of the other blood tests that are out there help tell the story.
Don't hesitate to ask anything and everything on this forum....great place...
That's interesting Jerry.
Though my PSA has never been a very good indicator, other than the doubling rate when it rose from 1.6 to 2.62 to 3.68 before my biopsy, that is the metric we are relying on, plus whether any enduring bone met pain develops.
My Medical Oncologist at Shands does not plan on doing any quarterly bone scans. MRI's etc. When we were doing scans, we did not do the more high powered C-18 and F-11 as knowing there were more small mets would not have changed the treatment plan of Lupron & Xgeva.
My second opinion urologist/surgeon did order a CTC Circulating Tumor Cell test that came back favorable (I don't use the word negative since no cancer in course of forming found IMO is positive).
Also my new radiation oncologist did order the MRI's which in case of pelvic area showed classic PCa metastatic to bone in right sacroiliac even though bone scan merely showed a dot not symmetric with left sacroiliac.
However the MRI to spine was favorable and showed that the brightest glow on bone scans was actually a benign herniated disc with spinal compression at T7 & T8 that i never knew I had since I have no back pain. I still have so-called mild bone metastasis at T4 & T9.
I may ask the MO at Shands about
spot radiation now that I do not have mets at T7-T8-T9 which were too close together to consider radiaiton.
Glad folks liked the term "extra diligent" as opposed to worry.
Since I have minimal side effects from Lupron and no pain from the mets, I am very fortunate as a G9 and try to live by yours, Redwing's and Sonny's motto.
I had to confess to the minister and my sister that their praying for me daily is more than I even do since I do not even think about
PCa except when I am on this forum or on the other I frequent Inspire.com.
If the NIH or anyone else ever comes up with a clinical trial for those of us who have mets but are not yet castrate resistant, I would be very interested. Would much rather bring the fight than play defense, that eventually will fail.
65 - DX 64 2/13 PSA 3.68 (6 mo doubling) Gleason 9 (4+5)
T1CN0M1B stage IV w. 7 of 12 cores worst ones 70% right PNI
oligometastatic 5 tumors 1 right sacroiliac, 2 thoracic vertebral bodies (spine), 2 right posterior ribs
1st Lupron 4 month 3-28-13, 2nd Aug 1
PSA down was 3.68, 0.68 on 08-08-13
PSA 0.20 on 11-12-13, T=5
UF & Shands treating w curative intent, not just palliative.