Greetings all. I've been on this forum for years. I've only commented a handful of times, and never made a post. I prefer to usually just read from the sidelines.
First of all, a bit about my path thus far. I was diagnosed in May 2010 (age 49) (PSA 4.7 and Gleason 7), had radical surgery in July 2010 by Dr Catalona (where pathology found Gleason 9), then the first PSA six weeks post-surgery was 1.8. I followed that up with Casodex, Lupron, and radiation via Rapidarc. Jumping ahead a bit, I stayed on Lupron and Casodex (oh yeah, and Finisteride for a year or two), and that held me until 2018. I'm glad because once the ACA healthcare exchange went live I was priced out of insurance for a few years. I was able to get my Lupron injections, Casodex script, and PSA tests handled at the community health clinic.
My PSA numbers always stayed fairly low, but by summer 2018 they doubled and doubled again (peaking at 16.7) within several weeks and got a referral to an oncologist. I had tried to find an oncologist, but when the ACA went live both my medical and radiation oncologist suddenly decided to take early retirement, both insisting it had nothing to do with the exchange. Whatever, but it sure seemed like a bit more than a coincidence. I searched around several times and couldn't find an oncologist within 50 miles accepting new patients. Weird. Thankfully the referral from the community clinic together with my numbers got me in the door where I still am today. The new doc took me off Casodex and put me on docetaxel x6, which was a bear but I got through it. My PSA came down to, IIRC, 0.42. I wrapped up chemo in Nov 2018 and that held well enough until the beginning of 2020, when he put me on Nubeqa. That took my PSA down to what I considered an impressive 0.04.
In 2022 I asked about the possibility of radiation to zap the 3 lymph nodes that were the only places scans ever showed any hits, and they gave me a referral. I believe I got 5 rounds that time around. Shortly after I also asked about the possibility of switching from Lupron to Orgovyx, which he did. I was his first patient ever to use Orgovyx.
Jumping ahead again, the numbers crept pretty slowly, then 3 months ago I was at 0.29 and this month tested at 0.45. Whoops! Yeah the number is still low, but I don't like seeing 50% jump in just 3 months! So I went in for a scan and the report said the previous nodes were now clear, but:
"There is a 5 mm node to the right of the IVC at the level of the aortic bifurcation which is PET positive, maximum SUV 5.4 on image 232, most likely metastatic disease. On image 243, adjacent to the right common iliac vasculature, there are at least two and possibly three small PET positive nodes, all measuring 5 mm or less in diameter, maximum SUV of 6.6 on image 243, consistent with metastatic disease. "
OK, so the three previous nodes were good, but there were 3 or 4 small new ones. But when we saw the oncologist a couple days ago he showed us the scans on his computer and those new spots barely lit up at all, very faint. He said radiation wouldn't have much of a target so that wouldn't help. Chemo, either docetaxel or cabazitaxel probably aren't a good idea at this point, with little to gain, but full side effects of course. So the good news is the scan isn't so bad, but the bad news is the PSA is rising. He said it's time to wait and see where it goes. I have a regular follow-up scheduled with the radiation oncologist later this year.
I am currently 63 and at this point, I'm tired. No longer working, I went on SSDI when I finished chemo in 2018. Any advice or thoughts?
Rising PSA 
My first post. Rising PSA After Surgery. 
Crossroads - ADT or wait for psma pet/LU 177? Meeting with oncologist to discuss tomorrow 
