PSMA scan report is in : (((

Posted by surftohealth88 @surftohealth88, 2 days ago

Ok .... First I want to say that PSMA obviously works at very low PSA, at lest worked for us at 0.14. Tracer used was F-18.

There are 4 nodes with mild uptake in pelvic area and one in the groin area (inguinal) which they think is possibly not PC and will be checked by biopsy or incision. My husband will ask for it to be removed and examined since it is on the surface, and he likes "things removed"in general. Other nodes are 3 iliac and one mesorectal.

So yeah 😔, I wish there was "nothing" but at least we know where the cancer is and it can be targeted. RO thinks that this does not change initial plan but it will be intensified , more Gys to nodes and he will talk to MO regarding ADT. Possibly now a year of ADT with addition of Nubeqa. So far my husband has zero SA from Orgovyx, but only 7 days passed since he started it, so we will see.

Warning to new patients :

1) - INSIST on node sampling during RP (we did but we were ignored) , so I do not know - maybe tell that you will raise the hell if they do not sample nodes (???). I am so angry, I can not even describe the state of me at this moment. We asked numerous times for nodes to be dissected since one was faintly glowing, my husband asked for that even right before he was wheeled in for surgery - and surgeon did not do it "since nodes looked normal" - somebody just sho*t me already !!!! 🤬

2) DO NOT WAIT for uPSA to go to over 0.2 - things will bee seen on PSMA even with mild uptake ! The earlier you start with sRT , the better.

Hugssss to alllll 🤗 and hoping that you are all having much better day.

Interested in more discussions like this? Go to the Prostate Cancer Support Group.

skiagain | @skiguru84 | 7 hours ago

In reply to @mjp0512 "@skiguru84 - Hey surf. Reported this comment to mods for you. Hopefully, a quick resolution." + (show)

@mjp0512
THANK YOU , THANK YOU , THANK YOU <3 !!!!!
Keeping my fingers crossed !

heavyphil | @heavyphil | 5 hours ago

In reply to @skiguru84 "@jeffmark , @heavyphil Good morning everybody - I apologize - THIS IS SURF WRITING from the..." + (show)

@skiguru84 I reached out to Colleen and explained the situation; I just saw your message so am sure others have already reached out on your behalf… Sit tight!
Phil

Colleen Young, Connect Director | @colleenyoung | 3 hours ago

In reply to @skiguru84 "@jeffmark , @heavyphil Good morning everybody - I apologize - THIS IS SURF WRITING from the..." + (show)

@skiguru84, please send me a message using this form: https://connect.mayoclinic.org/contact-a-community-moderator/

We'll get this untangled and your account up and running.

Jeff Marchi | @jeffmarc | 1 hour ago

In reply to @skiguru84 "@jeffmark , @heavyphil Good morning everybody - I apologize - THIS IS SURF WRITING from the..." + (show)

@skiguru84
Didn’t see your message until just now because I’m @jeffmarc and you put jeffmark

I sure hope they can fix your account soon. Good to see someone reported it.

sanDGuy | @sandguy | 51 minutes ago

In reply to @surftohealth88 "@denis76 They ignored our request to take some lymph nodes out during prostatectomy. It is actually..." + (show)

@surftohealth88
The slightly weird thing to me here is that, when I was about to have my RARP around the same time as your husband, but here at UCSD, I noticed that my schedule showed that including a lymphodectomy. I asked if that was necessary, and was told it was standard procedure!
The subsequent pathology showed they were okay, as it turned out (although I'm now a little concerned about slightly rising PSA--at an early stage)

p.s. sorry this is kind of echoing a previous comment as I had not read through the entire thread, but...yeah, as in Europe, apparently, it should now be standard here.