Greetings to all. I’m new to group. Diagnosed with advanced prostate cancer on April 2023. Cancer was outside the prostate so it was diagnosed as advanced by my radiologist. I have unanswered questions about my condition. Have not found anyone with a low PSA with high grade cancer. All my biopsy samples were a Gleason score of 9 (4+5). With a PSA of 3.1 when diagnosed one of my radiologist said my cancer was more aggressive. Not sure what that means. Is it also faster growing?
At this time I’m on the 20th month with 4 to go of Lutron Abriraterone and prednisone. After that it’s a wait and see from my oncologist and radiologist. My PSA has been undetectable for over a year.
Not satisfied with the wait and see so just signed up for the Survivorship program at Fred Hutch. It more of a precision oncology clinic at their research center. Anybody with a similar diagnosis?
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GHTomato
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Gleason 9, extracapsular extension and seminal vesicle invasion here. PSA at time of RALP was 4.1 up from 3 something 6 months earlier. Post RALP (Swedish Medical) my PSA never went undetectable so had salvage radiation to prostate bed and pelvic lymph nodes and am 21 months in on Eligard go to 24 months. As my PSA was increasing my doctor was telling me it was normal for a guy my age with BPH. I finally requested an MRI and it came back pi-rad 5. so far PSA undetectable. Good luck
Sounds like a similar diagnosis except my prostate was normal size with no symptoms. Saw a urologist for an enlarged bladder. Prostate didn’t feel normal. Nothing but Gleason 9 in all samples. My primary doctor said my bladder saved my life. Now on Lupron and Abriraterone. Have four months remaining of a two year program. Had 24 Proton treatments at Fred Hutch cancer center in Seattle. That PSA test guideline leaves us low PSA people not accounted for. Best of luck in the future. Thanks for replying.
Have a read of my Bio, it may be close to yours. I also had ECE and SVI. Still here 11+ years later. Treatment was/is older style SOC, now they would probably add arbi+presidone. You have to get use to the 'wait and see'. Since your handle is GHTomato, I thought I'd add that my secret "weapon" has been a breakfast similar to a Tomato Bruschetta Mix but I add a can of 4-beans and a handful of lentils, and a carrot (all simmered for 30 minutes) served on toast. It lasts for 4-5 meals. Maybe the lycopene and protein helped maybe not, but it tastes good. 👍 good luck.
My husband was diagnosed with a psa of 1.25, Gleason 9 (4+5), extra prostatic extension, pirads 5 in 2018. Found the cancer when he had a kidney stone. He was 52 at the time and is now 59. We were initially told the low psa producing cancer was more aggressive, but over the years the team has softened a bit by saying “every cancer is different, and his just produces low psa but responds very favorably to treatment”. He was found to have mets with a psa below 1.0 in 2019, but it was still adenocarcinoma, not neuroendocrine as we feared due to low psa.
Unfortunately there is a lot of waiting as we have to be vigilant with Gleason 9 disease. As of today, he has non detectable psa and clean scans while on lupron on nubeqa. He will start weaning off those meds at some point this year. He feels good, works full time, enjoys family and friends, and travels. Normal aches and pains that he isn’t sure if it’s normal aging or meds. In his own words, the worst part is mental, especially “scanxiety” every 3-4 months when he gets all his scans and bloodwork.
I also had a low PSA (3.1) with high grade cancer Gleason 9 (4+5). It progressed to advanced during Proton therapy. 4 more months on meds then wait and see by my oncologist and radiology. I don’t like the wait and see approach so sign up for Survivorship clinic at the Fred Hutch research center. First meeting on 3/26/2025. Will keep group updated.
My history is similar to yours. PSA checked yearly and level always about 1.0. Some urinary slowing. In between PSA’s urologist thought prostate felt firm but not unusual and 6 months later PSA 4.0. One month after that PSA 6.9. Ultimately diagnosed in August 2024 with 4b Pca, Gleason 9. Highest PSA then 18.
On triple therapy and finished 6 cycles docetaxel. Many bone Mets and lymph nodes resolved of cancer on PMSA Petscan but 2 persistent bone Mets, a few pelvic lymph nodes and prostate mass(1/2 the size) persist. I .Will get radiation to pelvis/prostate and SBRE to persistent bone mets in upcoming months PSA is 0.37. On Orgovyx and Nubequa.
Hindsight is always easy but a prostate US might have been helpful for symptoms/findings even with normal PSA.
my husband’s case is similar to your, diagnosed July 2024. He had genetic testing on the tumor biopsy. It showed MIS-H and high Tumor Mutational Burden. He recently started treatment with Keytruda.ask to have genetic mutation testing on your biopsy specimen.
I am G-9 SVI (one side only) , PNI, Lymphovascular invasion and IDC. Initial PSA was 4.2. Post RP undetectable for 3.5 years then a slight rise from 0.021 to 0.056 has PSMA scan that should have shown nothing but showed possible lymph node (suv 5.2) so 43 sessions of radiation and Orgovyx with Erleada. PSA went to undetectable 1/2 through radiation which means very good responder. Decipher was .41. Did you have a decipher? My docs say still possible curative BUT he did say the low PSA with IDC is a bit tricky for sure.
doable, hot flashes but E2 patches help a TON and fatigue of course. I work out a lot like 50 minutes 6 days a week this helps not fun but prefer to extend life
Gleason 8, PSA 2.7 at time of diagnosis almost 9 years ago. I was told it was aggressive. It hasn't been, at least after full gland HIFU ablation surgery.
Husband’s PSA has never been over 10 but is Gleason 8 with bone Mets. Lupron/Erleada keeping those in check and PSA now at .8. He has no symptoms or pain just SEs from the meds. Will be checking levels again a in a few weeks and hope for continued good news.
I am confused by your description. It seems that you have received radiation treatment for the primary tumor and have been on Lupron and Abiraterone since then?
In my case, I had a Gleason (5+4) = 9, a RP and then Docetaxel + Lupron, 6-month break from Lupron after six months of treatment, then Axumin Scan (revealed bone lesion and soft tissue tumor), SBRT for lesion, Lupron + Abiraterone for the last 5 years. As far as I know, you do not stop Lupron + Abiraterone unless your PSA gets up to PSMA scan levels. It's not based on a time period but on your PSA.
My PSA reached a high of... 4.8, and yet my cancer was Gleason 9, with spread to my lymph nodes (stage IVa). It was described as aggressive, but my treatment plan (EBRT + ADT) was categorized as "curative." After my last radiation treatment I was told my possibility of success was 50/50. Still hopeful at this point, but won't know until next December, when I have another PSMA/PET scan.
Sound very similar to my condition. Finding out that cancer with a low PSA is most likely a Gleason 9 which is most likely a more aggressive cancer. Thanks for the bio.
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