PSMA scan report is in : (((

Posted by surftohealth88 @surftohealth88, May 29 7:07pm

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.

heavyphil | @heavyphil | 3 days ago

In reply to @surftohealth88 "@heavyphil What do you mean "both" lol ? 😆 PS: I wanted to mention those sutures..." + (show)

@surftohealth88 I’m telling you, girl, there’s an albatross hovering overhead!!😳

dpayton | @dpayton | 3 days ago

In reply to @surftohealth88 "@heavyphil What do you mean "both" lol ? 😆 PS: I wanted to mention those sutures..." + (show)

@surftohealth88

TMI TMI!!! 😂😂😂😂😂😂

surftohealth88 | @surftohealth88 | 3 days ago

In reply to @dpayton "@surftohealth88 TMI TMI!!! 😂😂😂😂😂😂" + (show)

@dpayton
Oh I see LMAO - you guys talking about unsuccessful masturbation, leaking, shrinking, climacturia , stretching "it" , pumping, is just very pleasant conversation and serine imaging , and giving birth to a beautiful child is just "too much" information , geeeezzzzzz 🤪 Unbelievable LMAO , ahahhaaaaaa SHOCKING !!!!

surftohealth88 | @surftohealth88 | 3 days ago

In reply to @heavyphil "@surftohealth88 I’m telling you, girl, there’s an albatross hovering overhead!!😳" + (show)

@heavyphil
Still waiting for "two openings" explanation 😂 !!!

Albatross - well I guess we share the same one , LMAO ; ).

bikeman1 | @bikeman1 | 3 days ago

In reply to @surftohealth88 "@dpayton Oh I see LMAO - you guys talking about unsuccessful masturbation, leaking, shrinking, climacturia ,..." + (show)

@surftohealth88
You are a total gem!!! Your sense of humor adds a lot to this group (as does your knowledge!!)
Jeff, hope it all sorts out soon and you are pain free and flowing when you want.

surftohealth88 | @surftohealth88 | 3 days ago

In reply to @bikeman1 "@surftohealth88 You are a total gem!!! Your sense of humor adds a lot to this group..." + (show)

@bikeman1
Thanks Bikeman 💗, I appreciate you too 🤗 !!!

dpayton | @dpayton | 2 days ago

In reply to @surftohealth88 "@dpayton Oh I see LMAO - you guys talking about unsuccessful masturbation, leaking, shrinking, climacturia ,..." + (show)

@surftohealth88

You're right, Surf!!! hahaha We could be starting every post with that. Literally. I think you know me by now, I'm pretty much 14 years old, maturity level. 🤣🙌

surftohealth88 | @surftohealth88 | 2 days ago

UPDATE !!!

Two and a half weeks on Orgovyx - still no SAs , thanks God and all angels. *sigh

We ordered test for total T and PSA and result is;

T : 18 (down from 746)
uPSA : 0.025

I can exhale somewhat now ... 🙏😇

Soon we will have consultations with MO and hopefully get Nubeqa instead of Abiraterone .

Hugsssss to allll : ))))

swl1956 | @swl1956 | 2 days ago

Surftohealth88,
Side effects can vary from patient to patient. I didn't have any side effects for the first month of ADT, but once my testosterone diminished side effects kicked in with hot flashes, fatigue, and no libido. Exercise helps! Although not something you'd wish to experience, I got used to them and they have been tolerable. I've been on orgovyx, zytiga, and prednisone for 18 months so far and also had 40 pelvic IMRT exposures total 80gy. The RT was easy except for keeping your bladder full during treatment without peeing yourself. Anyhow, tell your husband to hang tough.
There's hope. My PSA has been undetectable for many months now and feeling generally well. Stay focused on going forward. Many of us have had disappointing interactions with doctors and institutions and although it's infuriating I think think it's unfortunately typically part of our journeys.

ucla2025 | @ucla2025 | 2 days ago

In reply to @surftohealth88 "UPDATE !!! Two and a half weeks on Orgovyx - still no SAs , thanks God..." + (show)

@surftohealth88 I am so happy for both of you! Based on those results your husband is what is sometimes is called a “super responder.” Enjoy the relief!