The kind Moespy here in the group suggested that I write a post about my upcoming treatment. My RP was in Dec 2017 and I was a Gleason 9...three positive lymph nodes and seminal vesicle involved. While my initial post-surgery PSA was a wonderful .009 it slowly crept up over two years to a .38 in Oct 2019.
After speaking with some of the attending physicians/researchers I was determined to have a Gallium68 PSMA PET scan. I'd really recommend attending one of their conferences if you can swing it...I learned so much!
After putting out feelers for clinical trials and getting no bites I'd decided to go to Germany or Australia (I live in the US...it's not FDA approved yet) and pay out of pocket for the test as well as transportation. Suddenly, just prior to getting the ball rolling on going overseas, I heard back from UCSF in San Francisco...I'd been approved for their G68 trial. My original surgeon had to put in the order and there was a bit of paperwork involved. The test was only partially covered by my employer's insurance since its still (sadly) under review by the FDA and I paid $3300 for the test. I've been told that approval may be just months away...for god's sake hurry up!!
The result of the scan was two lesions were found...each 6mm in size and one each on a lymph node. Now to decide what to do with that information. I was excited by what I'd learned about SBRT/Cyberknife treatment in LA and definitely was considering it as that option is available in my city (Seattle). But then I had a consult with my original surgeon...she was excited to tell me that one of the surgeons in her clinic is doing a study with 1/2 dozen other doctors in the US where they are doing robotic lymphadenectomy for early-onset oligometastatic prostate cancer. I was a perfect candidate it seemed...and after my consult with the surgeon, Dr. James Porter in Seattle, the date was set to attack this surgically. He'll take out the two lymph nodes and nearby nodes and suspect tissue if needed as well. It's thought that the two nodes were already involved but missed in my original surgery in 2017. It's still major surgery...will take about 3 hours and I'll be hospitalized overnight to watch the lymphatic fluid drainage.
Dr. Porter said that his group of surgeons is close to publishing the results of their surgical treatment for early-caught metastases and that the results have been quite promising. I don't know the timeframe of their study so can't speak to that. His plan for me is continued monitoring of my PSA...and when it gets up to a .3 or so then I'll have another PSMA scan and we'll again look at a surgical option. This leaves radiation and ADT as future tools in the toolkit and puts those treatments off until absolutely necessary.
Both the radiation oncologist and the surgeon said I was a lucky guy getting into that G68 trial and that it has likely added years to my life. I hate to throw out such a powerful word but it seems it could potentially be a cure IF there are no other lesions that were undetected. I'm assuming there likely will be more but, according to the study linked below, a cure is potentially possible if those are in fact the only two spots.
My surgery is coming in a few days...wanted to pass this on to those that might find it useful. Best wishes to my fellow warriors!