Stage 4 with distant lymph node involvement

Interesting I had 6 of 35 nodes positive in surgical path. Psa rising post op but no distant spread. One oncologist told me collarbone lymph nodes first to distant spread. Where does petscan pick up spread?

I have surgery in December 2017, 10 months of undetectable PSA, then radiation and 2 years of ADT after PSA reached close to .2. After about 9 months off ADT, my PSA rose to 1.57 over about 9 months. First PET scan showed nothing when PSA was close to .5. Second PET scan showed one lymph node with PCa above my stomach area on the left side. Did 3 weeks of spot radiation and committed to 18 months of ADT. Dr. Kwon is hoping for a cure, but I know how stubborn PCa can be. I at least hope to kick the can down the road. I was 51 when diagnosed and 57 now. I am grateful for Mayo. I wish I had gone there earlier. I wish you the very best of luck!

I had 3+4 aggressive PS portion so RP 01/22 with positive margins. Had one spot of PC on a rib.
Started Lupron 03/22 every 3 months.
PSA didn't drop as fast as yours but by 6 months it was negligible and has remained negligible since.
Now I expect to have last Lupron shot 03/24 and am looking forward to slow loss of hot flashes and loss of strength with a hopeful clear path for years (with constant monitoring of PSA).
Hope you do at least as well if not better.
Good luck and God Speed!

@jackdonovan, I hope you saw the helpful posts from @grandpun @florida11 and @billfarm. Like Bill, I'm curious to know where the PET scan showed activity in distant lymph nodes. Will you continue with Lupron?

The lymph node involvement is in my thorax. The non-enlarged supraclavicular lymph nodes bilaterally and within non enlarged lymph nodes at the thoracic inlet. Activity is greatest in a non enlarged left paraspinous node.
I have had 1 shot of lupron and my PSA has fallen to 0.05. I am due another shot in march. My local oncologist wants me to start with Xtandi, to be taken alongside the lupron, but is encouraging me to get a second opinion, therefore I am trying to get an appointment at the Mayo. My local oncologist also wanted a biopsy of the involved nodes but getting tissue samples is more than they can do locally.
About 8 years ago I was enrolled in a neurological clinical trial, for an auto immune disease, at the Mayo, which proved to be highly successful, so I fully understand the incredible dedication and professionalism of everyone at the clinic. I think I can only benefit from their input on my condition.
What seems to surprise my local physicians is that the cancer is only in my lymph nodes. I have no doubt that this will change in time but as of the moment I feel good with very manageable side effects from lupron.

Thank you all for your time. My very best wishes to you all.
Merry Christmas

That's promising that you're working with a doctor who encourages second opinions. Will your oncologist submit the physician referral for you to Mayo Clinic? Or did you self refer? Let me know if you info on how to get started.

My local doctor has sent a referral and all of my charts / scans etc to the Mayo. I already have a patient number, from my multiple visits several years ago, so that was included with my info. I hope to hear soon about an appointment.