Thank you so much for sharing your story JWH.
We share many similarities. My PSA at 8 and 10 weeks post surgery was .32; at 12 weeks it was .40, my highest G was 3+4 and my volume was 15%.
I'll have another PSA test and an Axumin scan the first week of November, then meet with my RO to agree on a plan. I'm also talking to an MO, for the first time, tomorrow to get a fresh perspective. My slides have been submitted for another Decipher test. I should have the results by the time I meet with my RO.
Like you, the result of my Heterophile blood screen was negative. It was a long shot at best.
I've been accepted into a DCFPyL scan clinical trial, but the date is TBD. May be overkill given my scheduled Axumin scan. They are both PET/CT, so they are both the same amount of radiation, but the DCFPyL is more sensitive. Since it's a clinical trial, I don't know when it can be scheduled, so the Axumin will have to surface.
Trying to locate the source of my persistent PSA is like the proverbial search for the needle in the haystack. My next PSA, in three weeks should be telling. The source of my PSA is probably residual fossa tissue, hopefully with no cancer cells escaping the prostate bed. Maybe the scan will tell.
Also like you I want to avoid adjuvant ADT side effects if, and when, I get IMRT. It seems to have gone fairly well for you. The next month or so should tell for me.
Your story and positive results are very encouraging. Thanks for sharing them.
70 years old @ Dx, LUTS for 7 years
PSA's never over 3.0
Ulcerative Colitis since 1973
TURP 2/16, G3+4 discovered,
3T MRI fusion guided biopsy 6/16
14 cores; G 3+3, one G3+4, Grade T1b
Second 3T MRI 1/17
RALP 7/17 Dr. Gonzaglo The Univ of Miami
G3+4 Organ confined
pT2c pNO pMn/a
Mostly Dry so far
10 week PSA .32
12 week PSA .40
It's called Persistent PSA
Post Edited (garyi) : 10/19/2017 8:18:36 PM (GMT-6)