Diagnosed Yesterday 04/14/26 - Gleason 9 treatment

Posted by byelliq6 @byelliq6, 12 hours ago

I'm new to the Board and PCa
For your review, Summary below.

PSA test 2006-2022 yearly like clockwork came in at 1.8-2.2 at various labs in USA and Overseas.
Was in UK 2022-2025 and they omitted the PSA testing as it is not standard they did other blood panels but only basic metabolic panel due to my age of 49-50 at the time… UK is not good on preventative testing to say the least.

I didn’t think anything of it as I am very athletic and healthy with 0 health issues and I don’t have any of the BRCA1, BRCA2, HOXB13 or other genetic mutations which I verified in testing in 2011.

Now Back in USA full blood panel 10/23/2025
All signs good but all of a sudden 5.4 PSA
Referred urologist DRE negative - health good..
Urologist wanted retest in 3 months (yes this was a bad call but I didn’t second guess it at the time)

PSA test 02/23/26 - 7.5
PSA density .28
High velocity

03/04/26 MRI - PIRAD 5 - Right Posterolateral peripheral zone 1.5cm x 1.1cm x 1.2cm
No extraprostatic extension seen, seminal vesicles and nuerovascular bundles normal, no bone lesions or lymph node involvement.. Urologist didn’t review these results with me for 2 weeks…

Alarms went off in my head, fired urologist, went to best Urological Oncologist I could find. TESTS proceeded as I could schedule:

Scheduled MRI fusion Biopsy targeted 04/02/2026
Results 04/09/26 - nightmare

FINAL DIAGNOSIS: This case is considered Grade Group 5

Prostate,LeftLateralBase, 2 NeedleBiopsy: 
- Benign prostate tissue. 
 Prostate,LeftLateralMid, 2 NeedleBiopsy: - Benign prostate tissue. 
 Prostate,LeftLateralApex, 2 NeedleBiopsy: - Benign prostate tissue. 


Prostate,RightLateralBase NeedleBiopsy:
- ADENOCARCINOMA OF THE PROSTATE, GLEASON SCORE 4+4=8, INVOLVING TWO OF TWO CORES (95 % OF THE TOTAL SURFACE VOLUME; THE LARGEST TUMOR FOCUS 95 %, 9.5 MM). 


Prostate,RightLateralMid,NeedleBiopsy:
- ADENOCARCINOMA OF THE PROSTATE, GLEASON SCORE 4+5=9, INVOLVING FOUR OF FOUR CORES (90 % OF THE TOTAL SURFACE VOLUME; THE LARGEST TUMOR FOCUS 95 %, 14 MM). 


Prostate,RightLateralApex,NeedleBiopsy:
- ADENOCARCINOMA OF THE PROSTATE, GLEASON SCORE 4+5=9, INVOLVING TWO OF TWO CORES (25 % OF THE TOTAL SURFACE VOLUME; THE LARGEST TUMOR FOCUS 40 %, 6 MM). 


Ouch.

Immediate PSMA Pet scan 6 days later - Most stress I’ve ever dealt with going to test, waiting for results, taking to MD, I was certain that I had uptake due to tumor size, grade and volume but scan was clean no evident spread: Miracle

FINDINGS:
Head and neck: Normal physiologic uptake in the head and neck. No soft tissue mass or lymphadenopathy.
Chest: Normal physiologic activity. No pulmonary nodules or lymphadenopathy.
Abdomen and pelvis: No abnormal activity within the prostate bed. Normal physiologic activity throughout the abdomen and pelvis. No soft tissue mass or lymphadenopathy.
There is increased tracer activity within the central aspect of the right side of the prostate gland.
Skeleton and extremities: There is no abnormal uptake in the axial or appendicular skeleton

Increased tracer activity within the central aspect of the right side of the prostate gland, consistent with prostate cancer. 2. No evidence for metastatic disease.

So as you all know there is a high chance that I will have BCR and positive surgical margins as well as metastases within 10 years with this Grade 5 Gleason 9. Most certain there is Microscopic spread at this point.

Treatment options: Surgery or Radiation


I believe my Urological Oncologist believes he can successfully perform clean Davinci RP and I’ve spoken with the RO about follow up radiation, ADT ETC…. I’ll probably loose the right nerve bundle but I’m ok with this as having such a large Gleason 9 lesion and high velocity PSA. He is competent with quite a bit of experience.

Microscopic spread is the issue of course.

Or I just choose ADT 2-3 years and aggressive MaxRT (rational and chemo).. anyone been in this situation? Im 54 now so I want to live longer as I have young children…

Any Advice or idea where I can get a second opinion Quick as time is an issue in this case.

Interested in more discussions like this? Go to the Prostate Cancer Support Group.

Your situation is a lot like mine. I had a test after returning to the U.S. that found high PSA. After the MRI, PET Scan, and biopsy, it was a Gleason 10 (later post-surgery pathology downgraded to 9 with cribriform), and PIRAD 5. After much research and discussions with docs and my wife, I chose non-nerve sparing RARP in Oct 2025 due to the cancer locations, severity, high risk of return, and treatment options should cancer reoccur. Surgery turned out well with clean margins and no spread, but I do have light incontinence, which has seen improvement, and ED. Both I expected and we working through. I am happy with the decision. This forum has helped immensely. Your way forward might be different, but whatever you choose will be well researched and what you decide will be the right option for you and yours. Best.

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