Connect
PSMA scan report is in : (((
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.
Like
Helpful
HugInterested in more discussions like this? Go to the Prostate Cancer Support Group.
Connect
Oh Surf, Sending many hugs your way. I do not understand what these doctors are thinking / doing. Are they just sleep-walking through their patient reviews?
Pre RP, our PSMA PET scan showed SUV uptake in two iliac nodes, one slightly enlarged, but they were cut out and the pathology showed no cancer. So maybe some, or all, of your lymph nodes are 'false positives' :crossing my fingers:
D*mn the decipher score - full speed ahead with treatment. You will beat this!
-
Like -
Helpful -
Hug
3 ReactionsWith a PSA of 0.30 I told my doctor I wanted to wait until 0.50 before taking a PSMA, but he insisted. So I took the scan and It detected nothing. The odds of detecting cancerous activity increases exponentially at 0.50. At 0,53 my second PSMA detected hot spots.
-
Like -
Helpful -
Hug
2 Reactions@mjp0512
P.S....I sure would like to have some of these 0.1's and 0.5's PSA's you guys are talking about. 🤣😁
-
Like -
Helpful -
Hug
4 ReactionsHang in there there Surf We are all rooting for you
Ed
-
Like -
Helpful -
Hug
4 Reactions@denis76
@surftohealth88 said the following in the first message “ INSIST on node sampling during RP (we did but we were ignored) ,”
In their case, exactly what she asked them to do, And they ignored it, Is exactly what’s going on now.
-
Like -
Helpful -
Hug
2 Reactions@surftohealth88
Hmm, that's interesting Surf. Can you really tell just by looking that the node looks "normal?" When I had my surgery, the doc took about 20 nodes out and biopsied them(all negative). I'm a G9 so maybe that's why he did it? I don't know. Deep breath Surg! You guys got this. Sending hugs and prayers...
Doug
-
Like -
Helpful -
Hug
4 Reactions@mjp0512
Thanks so much Mjp for your input and advice and for comforting words of encouragement and hope. 💗It means a lot coming form a person who has to deal with this PC craziness in its' full exhibition of insane behavior 😔. You know, it is almost inhumane what cancer patients have to go through and how many hoops they have to jump through just to get BASIC mediocre care and for exceptional care - oh well, one better starts becoming a contortionist and magician at the same time. *sigh
Sending HUGSSSSS and blessings your way 🤗
@heavyphil
Thanks dear Phil for understanding my frustration and anger 🥺, I do not know what hurts more, the PC or the fact that my husband had sub-optimal care from the very beginning , from the time of active surveillance to this day 😭 !!! At this moment I am in the state of mild panic since I do not trust those doctors any more : (((. Just the late evening yesterday we got message that MO suggested Abiraterone and prednisone even though we requested Nubeqa MULTIPLE times - WTH ???????
My husband is on Medicare so it will be covered so what is their problem ???? Well I will not have a chance to ask them that till Monday and I hope I do not explode before that opportunity arises.
I also made my husband promise me that he will call Stanford and UCLA first thing Monday morning and seek opinion and/or transfer care there if they offer a better plan. We can not afford going to Mayo locations, otherwise we would be there long time ago.
Now that Mr. Surf is on Orgovyx we have a "shield" and now we have to find proper flail and fast horse to finish off those PC dragon eggs , some flimsy Halloween costume will not do !
This is ridiculous , honestly !!! Such a big cancer center - total disorganization. They should invest in care coordinators among other things since basically I am doing that part and I am yet to see that famous "team work" that they advertise - there was not a single "tumor board" discussion - it is always just having zoom appointments with each individual doctor separately and weeeekssss apart while situation is developing and changing rapidly ! What was discussed 4 weeks ago is not applicable NOW with those new findings. Insanity all around...
Like we are talking about some meal recipe changes- oh lets now try some pepper on top of salt and see how it goes. "But I am allergic to pepper and WHY pepper when oregano will do much better job and will not put me possibly in ER" !???!😨
Nope - try pepper first (?#^@%!) , its' cheaper ... (?????)
All in all - thanks again bud for writing, caring , listening and understanding, means a LOT 💖🤗
*HUGSSSSSSS
-
Like -
Helpful -
Hug
3 Reactions@edinmaryland
Thanks Ed so much for being here for us 🥰🌺 - means a LOT !
@klein505
Awwwwwww Mrs. K 🥰, thanks so much for those words of hope and encouragement !!! Imagine that possibility *sigh , oh boy, I would be very happy if at least 2 glands were "pretenders". Two have very low SUV of 3 , if there is any mercy in heaven they are just glowing to taunt me and nothing more 🙏
Yes - full speed ahead !!! 🌺🤗 Sending blessings and tons of hugsssss your way : ))) !!!!
-
Like -
Helpful -
Hug
2 Reactions