Requesting Guidance

[jsmdwp]

Hi everyone. New to this site and grateful to have found such a knowledgeable community. Can I ask your advice?

My profile: 59 years old, RP at Mayo (Rochester) in December 2017 (one year ago), Gleason 7 (4+3), negative margins but 1 of 13 lymph nodes was positive. Now monitoring things mindfully. PSA’s have been undetectable to date (ultrasensitive PSA’s).

At Mayo follow-up, part of discussion was gameplan for possible recurrence. Further lymph node resection was discussed if future rise in PSA reveals recurrence is limited to other pelvic lymph nodes.

Anyone have experience with this? Any advice? Should I have a precautionary consult with a radiation oncologist should I need them in the future?

Thank you for your thoughtful guidance. Best to everyone this holiday season.

[Tall_Allen]

I am doubtful that extended pelvic lymph node dissection (ePLND) can find and remove ALL the nodes that have been infected. Before you decide, I think you should talk to a radiation oncologist as well. That said, I think that Mayo is the best in the US at ePLND. Lymphocele and lymphedema are possible side effects.

[jsmdwp in reply to Tall_Allen]

Thank you Tall_Allen. Very much appreciate your guidance.

[jsmdwp in reply to Tall_Allen]

Hi Tall_Allen. I live in Atlanta. Went to Mayo after a series of bad experiences at Emory urology. Just wondering if you can recommend a radiation oncologist either in the Atlanta area or the Southeast. Thank you much.

[Tall_Allen in reply to jsmdwp]

A patient I respect said his RO at Piedmont Hospital was very good (I can't recall his name). In Florida, the first name that comes to mind is Constantine Mantz at 21st Century Oncology in Ft Myers.

[jsmdwp in reply to Tall_Allen]

Hello TA. I’m most appreciative of your wisdom on this site. Might I ask your opinion of Dr. Geo at NYU. Is he legit? I was considering a consultation when in nyc later this summer. I remain undetectable 18 months post RP. Thank you, Stephen.

[Tall_Allen in reply to jsmdwp]

I'm a big believer in evidence based medicine. I have no idea what he knows or doesn't know. His website cites actionable conclusions from very poor evidence, which is exactly what I disagree with.

[jsmdwp]

Thank you!

[jsmdwp]

Thank you. I was concerned that the website seemed more self-promoting than evidence based. Appreciate you!

[lhall2]

I am similar to your situation. Gleason score of 7 afterRP & cancer found on one lymph node of 10 removed nine months ago. My last ultra sensitive PSA was 0.028. Vanderbilt says results same if radiation & hormone therapy done when PSA undetectable or slight rise. Have given time body to heal so no additional treatments at this point. Next appointment is 3/2/21 so need to make decision at that point. What have been your experiences? Thanks

[jsmdwp in reply to lhall2]

I can appreciate your predicament. I’m now 3 years out from my RP in 2017. After surgery I consulted with my Mayo urologist, local prostate cancer oncologist and a radiation oncologist given that no one had a clear recommendation. My one lymph node was not detected on MRI the week prior to surgery.

I’ve maintained low PSA. At the 2 year post-op mark I jumped from undetectable to 0.049 right before covid. It was another 4 months before I could get tested again. Since then I’ve been < 0.014 (still confused if that is the new lowest reading at Labcorp for ultra sensitive PSA). Urologist thinks it was a lab error - who knows.

We’re you undetectable before your most recent PSA?

I’m a physician and try to think critically about treatment options. I’m 61, work out regularly and eat a pescatarian diet. I take a few supplements, but I try to weigh logic, evidence and risks vs benefits. I go off of supplements for the week prior to PSA testing. I very much trust Tall Allen on this site for clear evidence-based guidance.

I keep hoping that with more time we will have better treatment options that are less brutal on our bodies. But, in the meantime I will opt for any and all current treatments when indicated.

I wish you well on this journey, and good luck to you with your upcoming appointment. Glad to discuss more at any point and appreciate you sharing your experiences. 🙏🏻