New Diagnosis. My cancer has morphed… - Advanced Prostate...

Advanced Prostate Cancer

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New Diagnosis. My cancer has morphed…

DeanNelson profile image
17 Replies

so now I have Sarcomatiod Carcinoma of the Prostate.

I’ve failed everything else and I’ve been offered Pluvicto. I have not had my psma scan but I have a question, is PSA and PSMA directly related?… my PSA has NEVER been over 3.6 .. so my thought is my cancer will not express psma is this correct thinking?

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DeanNelson profile image
DeanNelson
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17 Replies

Dammit Dean ! I’m sorry for this uptick . I remember your first day here . I had a high Psa of just 20 .. Yet it almost killed me k failure and all . This is the brutal nature of the beast hiding within us all . You’ve got no choice except to kick it in the teeth again. Others will chim in as what to do . Stay strong , my best to your lovely wife . I recall the pics of you two. You will push it away again ! Stay strong & God bless! 🙏

DeanNelson profile image
DeanNelson in reply to

Thanks

in reply to DeanNelson

🙏

Tall_Allen profile image
Tall_Allen

They are different proteins. PSA can be low but tumors may still express PSMA. How was it diagnosed? If by IHC, they can stain the tissue to see how much PSMA it expresses too.

DeanNelson profile image
DeanNelson in reply to Tall_Allen

I had my 4th TURP 3 weeks ago, they (VA) sent a tissue sample to the Navy

dockam profile image
dockam

.Hi, both are biomarkers used to help in a PCa diagnosis. The PSA (only made by prostate cells) is just a measurement of how much of that is in the blood. High numbers (>4) could just be BPH. If that number doesn't resolve with an antibiotic like Cipro &/or Flomax, then a biopsy is used to take samples and have pathology assess and give a Gleason score

PSMA is detected differently than PSA which uses a blood draw. You have to get a special chemical injected IV and 45 minutes later a scan is done to see where it's avid. They use SUV to show how much activity is present, the higher the number the worse it is. Only PCa cells have the PSMA on the surface. You have to have PSMA detected in order to get Pluvicto

Higher Gleason numbers will indicate how "messed up" the cells are, and then really messed up cells may not even be able to produce PSA anymore, thus PCa present with a low PSA

My PSMA scan from a couple weeks ago. The SUV at 87.5 is really no bueno. I'm getting a radiation onco cons this Friday,, then 38th chemo in PM

Btw, my PSA at diagnosis in 01/2015 was 840.2!

Fight on

PSMA scan
MichaelDD profile image
MichaelDD

 I have never been over 12. And I am very unique in the fact that I am metastatic to my lungs only, and lungs only it is. No where else. Everyone questions was was this prostate cancer or lung cancer? I was in the trial for GA-68 PSMA at UCSF. I went into that trial at 1.9 PSA . During the trial it was found and no other scans could locate it .. as both of my oncologists say my cancer is not PSA driven.. The only detection I have had so far is the proving this is Prostate cancer has been with the GA68 PSMA trial and using that scan. IF this is prostate cancer, then it will express with a PSMA. Every time I go in to see an oncologist or doctor,now just because my detection was proven with PSMA there is no question mine is prostate cancer. Even after my prostate removal my PSA has never gone above 2.

tango65 profile image
tango65

Spindle cells may have a high expression of PSMA. It is possible that your PSMA PET/CT could show PSMA avid lesions making it possible to treat the cancer with Lu 177 PSMA.

journals.lww.com/nuclearmed...

Battle_on profile image
Battle_on

I have the same question and can’t seem to get a concrete answer. Though my husband’s skeleton is riddled with cancer, his PSA is still .02. He has failed ADT and Docetaxel. He is scheduled for SBRT soon for two bone Mets whose SUV values increased in spite of Docetaxel, but are still in the low teens. He’s been approved for Pluvicto. One oncologist recommends it-another says he would not expect good results due to his low SUV (PSMA) numbers. In the meantime he’s lost 70 pounds, has no appetite, no strength or stamina, bone pain, itchy rash, phlegm cough, just plain miserable. At this point, we are considering hospice after the SBRT, as I just don’t think he would survive the side effects of Pluvicto or another round of chemo. He has a large bulge on his back from a rib metastasis that has obviously grown despite not showing increased activity on the PSMA scan. I’ve inquired about an FDG scan or some other test to verify non PSMA avid cancer, but it’s probably too late to matter much. It seems to me that much of advanced prostate cancer treatment is still just trial and error until something works or kills you. Sorry to be such a downer, but this is our unfortunate reality right now.

Grumpyswife profile image
Grumpyswife in reply to Battle_on

I just wanted to say that my husband was in tough shape when he finally got Pluvicto and he experienced no side effects. He actually rallied. It may be worth it.

Battle_on profile image
Battle_on in reply to Grumpyswife

Thank you for your words of encouragement. What were Grumpy’s SUV values when he started Pluvicto?

Benkaymel profile image
Benkaymel in reply to Battle_on

So sorry to hear your husband's situation. I read his Bio and it's heartbreaking that he has deteriorated so quickly despite all the treatment. There are many men on here who have lasted years on the same treatments from a similar initial diagnosis, but your husband has been so unlucky. Sending my hopes and wishes that something comes up to turn his situation around x

DeanNelson profile image
DeanNelson in reply to Battle_on

I’m so sorry, sometimes this journey is harder on the spouse than the partner with it. I just was admitted into home hospice last week, my VA doctor recommended it. It’s been WONDERFUL my pain and sleeplessness gone. And I can still smoke(vaporizer) my cannabis. Which makes me very hungry, active and chilled. If he hasn’t tried cannabis he should.

I’m praying may good vibes, peace and love be with you both.

Dean

EdBacon profile image
EdBacon in reply to DeanNelson

Which cannabis strains and method are you using?

I'm having some bone pain from the mets and have not been able to get relief so far with cannabis which has been a big disappointment for me. It's worked for other types of lower level pain, but not the bone pain. Would really like to have an alternative to Norco.

DeanNelson profile image
DeanNelson in reply to EdBacon

it’s a indica called grand daddy purple. Are you in USA?

EdBacon profile image
EdBacon in reply to DeanNelson

I'm very familiar with this strain and have used it in the past, but not since the bone pain. It worked well for me when I was having muscles spasm up in the early days. Haven't tried it on the bone pain though. Will have to give it another try. Thanks!

Yes, I'm in the US. Live in California. Lots of places to get GDP.

MichaelDD profile image
MichaelDD

There is no need to do a biopsy according to two top UCSF doctors. One is Dr Hope, and he assured me that anything, or any help would be available with them if needed. Ironically my "local" oncologist happens to be best friends with another UCSF top researcher. He too has assured me as my consultant to my oncologist that no biopsy would be needed. The scan solidifies in their minds this is prostate cancer metastatic. I too am a 15-year stage 2 breast cancer survivor. There was some question with that. I have gone through a radical mastectomy, lymph node removal and chemo with radiation. If anything they wondered if that was metastatic. This trial scan proved with assurance that it wasn't breast cancer metastatic but definitely prostate cancer.

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