Has anyone had PC that is very aggressive and a very low low PSA?

Posted by sam60 @sam60, Jul 13, 2023

My cancer is now chemical reoccurring after five years of ADH and Zytiga. My PSA rose to .5 and we did a PSMA scan, which came back with only a tiny uptake in one rib, and my scapula too small to even radiate my oncologist thinks that my cancer is of a type that is very aggressive. I have Glisan nine but very low PSA I’ve never had a PSA over five. has anyone had a cancer like this or know of anyone?

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Never heard of anyone, however not all PSA tests are the same. Get an utrasensative test done. Glad to hear you went 5 years on ADT. Before a return.

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I have PC with a Gleeson score of 9-10/10. My PSA was checked with bloodwork at annual physicals. In 14 months I went from normal to stage 4. December PSA about 3. By the time my local university medical system did scans and biopsies (over 4 months), it was 17.

I switched to Mayo. 14 months so far of ADT, 6 rounds of Docetaxel chemo, and 20 days of radiation. My 6 month post radiation scan was clean. No recurrent disease at this time.

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My story is similar to yours. My PSA jumped from 3.2 to 5.9 in Oct 2021. Biopsy done in Jan 2022, Gleason score 4+4. Radical prostatectomy performed in March 2022, final pathology report increased my Gleason score to 4+5, considered very aggressive. BCR in Sept 2022 with a PSA of 0.5. PSMA was negative fortunately. ADT and salvage radiation followed. PSA currently undetectable but T score still very low. Once my T score approaches normal, the PSA will become more meaningful.

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@philipbrachko

Never heard of anyone, however not all PSA tests are the same. Get an utrasensative test done. Glad to hear you went 5 years on ADT. Before a return.

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All my PSA test are ultra sensitive.

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@edo

My story is similar to yours. My PSA jumped from 3.2 to 5.9 in Oct 2021. Biopsy done in Jan 2022, Gleason score 4+4. Radical prostatectomy performed in March 2022, final pathology report increased my Gleason score to 4+5, considered very aggressive. BCR in Sept 2022 with a PSA of 0.5. PSMA was negative fortunately. ADT and salvage radiation followed. PSA currently undetectable but T score still very low. Once my T score approaches normal, the PSA will become more meaningful.

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Doctors say that five years on a DH with undetectable PSA was excellent considering Glisan nine. A DH for five years was challenging to say the least but I believe I’m here today because of it I also was put on Zytiga at the same time I started ADH . 5 years ago Zytiga was a new drug I now think the combination of both was a key to my success. Any ? Please contact me . 🙏

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@sam60

Doctors say that five years on a DH with undetectable PSA was excellent considering Glisan nine. A DH for five years was challenging to say the least but I believe I’m here today because of it I also was put on Zytiga at the same time I started ADH . 5 years ago Zytiga was a new drug I now think the combination of both was a key to my success. Any ? Please contact me . 🙏

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One more thought. I am having by biopsy tissue from five years ago being analyzed for mutations I believe it’s called genomic testing. It would be better if I had a more current tissue sample but I don’t and I’m glad I don’t have a tumor that they can take it from might consider doing this now, not sure it was available five years ago .

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@kam23

I have PC with a Gleeson score of 9-10/10. My PSA was checked with bloodwork at annual physicals. In 14 months I went from normal to stage 4. December PSA about 3. By the time my local university medical system did scans and biopsies (over 4 months), it was 17.

I switched to Mayo. 14 months so far of ADT, 6 rounds of Docetaxel chemo, and 20 days of radiation. My 6 month post radiation scan was clean. No recurrent disease at this time.

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I’m on Medicare, and Mayo won’t accept my insurance. I would be interested. If you could ask your oncologist what he thinks about aggressive prostate cancer with very low PSA.
Thanks

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@sam60

Doctors say that five years on a DH with undetectable PSA was excellent considering Glisan nine. A DH for five years was challenging to say the least but I believe I’m here today because of it I also was put on Zytiga at the same time I started ADH . 5 years ago Zytiga was a new drug I now think the combination of both was a key to my success. Any ? Please contact me . 🙏

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Went through my lengthy list of acronyms but can’t find DH. Please tell me what this stands for?
Thank you

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@sam60

I’m on Medicare, and Mayo won’t accept my insurance. I would be interested. If you could ask your oncologist what he thinks about aggressive prostate cancer with very low PSA.
Thanks

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My doc at Mayo has commented that about 14% of patients on Hormone Deprivation Therapy may experience very low PSA levels while simultaneously having rapidly advancing PC. For this reason, sensitive scans must also be used to confirm the status of the disease.
(This talk is on a video by Dr. Kwon which we found through the Prostate Cancer Research Institute, a very help organization. They may also be helpful.)

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I had a very low PSA and aggressive PC. My PSA was around 1.8 when I was diagnosed in Fall 2017, with a Gleason of 4+3=7 and a tertiary Gleeson 5 pattern. I have been told that my PC was "intraductal" and rare.

I had surgery in Dec. 2017, then an undetectable PSA for 10 months before it starting to rise. Had radiation in April/May 2019 when PSA was about .2 and 2 years of ADT. After stopping ADT in early 2021, my PSA began to rise again in mid-2022. Went to Mayo for the first time in January 2023 to see Dr. Kwon. The PET scan showed a lymph node light up, so I did three weeks of radiation across my abdomen in April 2023 and am currently on 18 months of ADT. My PSA went from undetectable to 1.57 over 9 months before Mayo treatment. It's been back to undetectable since the second round of ADT started. Hoping third time is a charm, but you know the anxiety waiting game.

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