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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.
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Yeayyyy !!!!! I'm BACK !!! : )))
THANKS COLLEEN ! 💐 @colleenyoung Thank you for coming to my rescue so fast <3 It is very much appreciated : )))
THANKS EVERYBODY for helping me *hugssssssss : ))))
Oh boy I am so happy and relieved now . 😌 See you all tomorrow morning <3 xo
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5 Reactions@sandguy
Hi sanDGuy 🙂, you are not "echoing" at all, and I am so happy to hear from you ! Long time no see : ).
Good that they checked your glands, please thank your surgeon in my name : ))) ! I really think that it is standard in any big center, our surgeon just was either lazy or in a hurry to catch that evening flight : (((.
I really hope that your small PSA move is just a blip and will not go any further up and can possibly even go back down 🍀 : ))). You are also lucky to have very caring surgeon so he will take care of you in a timely manner whatever and IF ever any problem arise.
Wishing you ZERO chance of BCR ✨ !
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3 ReactionsThat’s great that the PET scan detected his prostate cancer.
It’s not that PSMA PET scans don’t work at low PSAs. What is known is that at low PSAs, the detection rate of PSMA PET is low (see attached chart). His was fortunate to fall in that <33%.
Was his F18 scan the Pylarify
(F18-Piflufolastat) PET scan or the newer Posluma (F18-Flotufolastat) PET scan?
Also, remember that not everything that “lights up” in a PSMA PET scan is prostate cancer.
As it turns out, PSMA (prostate specific membrane antigen) is not really “prostate specific.” There are other organs, tissues, and fluids that naturally express PSMA (without being cancerous) and will show up as physiologic tracer uptake on a PSMA PET scan - particularly in the lacrimal (tear) and parotid (salivary) glands, blood, liver, spleen, pancreas, ganglia, and more, as well as the kidneys, ureters and bladder (as the body tries to quickly excrete the radioligand that was injected).
So, be cautious about excising or radiating everything that shows uptake.
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3 Reactions@brianjarvis
Thanks Brian for your input 👍.
I appreciate it a lot. I know that you are very studious and did a TON of research yourself, even from the time of your AS. I am really hoping that one node in his groin is not truly a cancer and I was thinking that biopsy of that node would be useful (???) for RT planing and for staging - what do you think about that first step ?
@dhasper
Hi Dhasper - thanks for the update 👍 and I am so happy to hear that you have no side effects from Lupron : ))) !
My husband was initially advised to take Orgovyx for 6 mos but after they discovered lymph node involvement on PSMA they advised extended ADT and addition of Abiraterone (we will fight for Nubeqa).
It is always good to hear second opinion : ).
Wishing you uneventful rest of the RT and complete victory over PC 🍀 Keep us posted : ))) !
@brianjarvis
Do pelvic lymph nodes ever take up that radioligand? I mentioned in a previous post that when my husband's PSA was 8 and the did the PSMA PET scan, two iliac lymph nodes had SUV's of 5.7 and 2.6. They were removed and pathologist found no cancer in the lymph odes.
He had the F-18 Posluma scan.
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3 ReactionsVery sorry to hear this happened. You are absolutely right to be furious. I hope the SRT plus ADT will kill that cancer for good. Keeping you and your hubby in my thoughts. Many hugs. 🤗
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3 Reactions@klein505 I’ve read that sometimes non-cancerous processes can cause mild PSMA uptake; for instance, nodes can occasionally show low-level uptake due to inflammation or infection.
How did those two SUVmax (maximum standardized uptake value) scores compare to the SUVmax values of his blood, liver, and parotid or lacrimal glands’ SUVmax expression?
@brianjarvis
Yes, I just read that other neoplastic calls can show uptake like follicular lymphoma etc., and of course inflammation or infection etc.
My husband's max SUV for parotid is 17.
Liver 4.0.
Blood 2.2
Forgot to answer to your question - his F18 was POSLUMA (??)
Nodes that are "iffy" have SUV 3 (8 x 7 mm) in the groin and one that is left external iliac SUV 3.3 ( 5 x 4 mm , was before 4 x 2 mm)
It is MIND boggling that something soooo tiny is so powerful and can kill a person : (((( eventually *sigh
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1 Reaction@topf
Awwww, thank you Topf 💗 : ). Thanks also for well-wishing, hopeful thoughts and for hugs, we definitely need them now. 🤗
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