Did you get a PET scan prior to radical prostatectomy?

Wow, there's a boatload to unpack there...

Your research found the same as mine, the PET isn't primary initially. My surgeon didn't recommend the PSMA PET CT scan until after RP when my PSA started to rise again. Even then, my insurance originally balked at paying for it. (they eventually did). It was negative, but, I've learned from others on here since that my PSA was still so low, the chance of finding anything was low. (which doesn't mean it isn't there, just not detectable yet).

If your husband has the RP and the PSA stays down they won't bother with the PET. They may if the PSA goes up trying to locate any metastasis that wasn't located before.

The LN involvement is a little beyond my experience, I can tell you that during my robotic RP my doc removed my right pelvic LN, he reasoned that almost all of my cancer was in the right side of the prostate so it was worth a check, that was negative on the post surgical pathology report.

"I believe that is required over laparoscopic when surgical plan is to remove all local LNs, correct? " Not sure about this one. My LN as indicated above was removed via robotic RP (Davinci). I'd try to confirm this if I were you. My LN anatomy knowledge is non-existent bu if we're just talking about two pelvic LNs then I can't see why it's not possible to do that with robotic surgery.

"does robotic assisted open RP have better side effect profile (urinary incontinence and erectile dysfunction) than open without robotic assistance?"

There's a lot of other variables that can come into play, but. In the zoom events that I attended the docs certainly suggested that robotic surgery was preferred for a few reasons, less risk of infection, recovery time as they aren't cutting you open as much and the stitching of the urethra is much better than can be done by hand. There's even a video of the machine doing this on line (you tube I think). I don't recall anyone telling me that outcomes post surgery were different. I've had conversations with a couple guys who had open RP, after the somewhat extended healing time, their post surgery experiences were similar to mine. I would get confirmation on why not robotic and maybe even a second opinion from someone who does a lot of robotic RPs.

Sorry I couldn't be more help here but there's folks with a lot more knowledge and experience that may have more for you.

My urologist/surgeon ordered a PSMA PET for me before going into robotic surgery but my insurance rejected twice. I ended up with bone scan and abdominal MRI which together costs more than a PET. Go figure. I had 15 pelvic lymph nodes removed along with my prostate using the DaVinci robot. All negative. Recovery not bad with 6 small incisions. Make sure your husband's surgeon does at least 2 of these a week. Mine averages 3 per week for 17 years. Try not to worry as I knpw this whole process is slow moving.

I have a very similar diagnosis (Feb 2022). I opted for radiation (39 sessions over 2 months). We assumed the enlarged pelvic lymph nodes were positive and they became part of the radiation plan. The PSA went from 80 to 1.2 (2months after completion of radiation). A later PSMA PET/CT. confirmed the LN's were positive but now greatly reduced.
I am now on Abiraterone (6weeks). PSA is now .4. Good Luck on this difficult journey.

@havhav, I wanted to make sure you saw the helpful posts from @web265 @perrychristopher and @spryguy regarding your questions about baseline PET scan before surgery, lymph nodes, and open be laparscopic surgery.

I see that you are in Canada. Are you able to get a referral to a major cancer centre in Canada?

Thanks so much for sharing your story and info, not to mention the well wishes 🙂

Thank you for your post and reassurance. Much appreciated

We are doing our best to find out best approach. My husband has a urologist who has scheduled him for RP surgery mid November. We would really like a psma scan first and at our request, he has sent in a referral for psma pet scan testing in Vancouver. Problem appears to be that the wait list is longer than the time we have before surgery. Sigh. We are going to contact them early this week to see if there is a cancellation list or anything helpful. We don’t feel comfortable bumping surgery back because of the mri report which was suspicious of prostate capsule disruption, not to mention also pelvic lymphadenopathy (though we realize that may have other sources). We are willing to travel. We just don’t have info on the various Mayo Clinic wait times for psma testing as if they all have longer wait times than Vancouver then won’t be much help. We would be paying out of pocket for psma pet scan in USA however also would be doing so in Vancouver as psma pet scans are not yet mainstream standard of care (not covered by provincial insurance). I think I will see if I can reach any of the Mayo Clinic’s next week to see if can get further info. though not sure if can get that info without first having a general appointment which is tough when not local. Will see . . .

Timing considerations are actually part of the initial intake questions of the online form to inquire about Mayo Clinic appointments. See here https://onlineservices.mayoclinic.org/NewAppointments/?v=int

By filling out the form, you are simply scheduling a time to speak with a coordinator. This will give you a chance to explain your situation and ask all your questions. It is certainly worth inquiring about. Wait times may vary between locations, i.e., Rochester vs Phoenix vs Jacksonville. Be sure to inquire about that too. Obviously, I hope that you might get this done sooner closer to home. I hope a cancellation might be an option.

Thank you for the info - we will definitely look into it.

Getting psma pet scan (gallium) end of this week (in Canada) 🎉.
Having radiation oncology consult in 10 days. Currently RP scheduled for 3 weeks time unless psma results and/or further consults change the plan . . .
Thank you for your advice and support 🙂