Connect
Questions about Gleason 9 treatment and second opinions
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.
Like
Helpful
HugInterested in more discussions like this? Go to the Prostate Cancer Support Group.
Connect
G 9 dx'd July 2022
Resources that helped me:
Patrick Walsh "Surviving Prostate Cancer" 2023 edition
Prostate Cancer Foundation PCF.org free Patient Guides by email or hardcopy
Best wishes
-
Like -
Helpful -
Hug
1 ReactionHi,
I would think like others have commented that a PMSA PET scan would be in order to see if your cancer has spread outside the Prostate capsule. The two standards are some type of radiation with testosterone reducing drugs(ADT) both before and after radiation. Surgery is the other standard usually with no ADT drugs. Sometimes on occasion surgery is used followed by ADT and radiation. I would imagine that you will talk to both your Urologist and a Oncologist.
Dave 3+4
JackB
Gleason 10,grade5,invasion of the left seminal vesicle,suspected metastatic left illiac lymph node, no sites of distant metastatic disease. PSA of 1.75. Treatment 44 sessions of radiation and ADT for two years to end this October. Testosterone <.03. For duration. Oncologist visit in two weeks with new blood work. What next?
@05271935 PSA every 3 months, tapering off to every 6 if your numbers remain stable.
However, it is up to your oncologist; he might want to monitor you even more closely due to your high Gleason score and localized spread.
Phil
What puzzles me is how could I have a PSA of 1.75 and Gleason of 10. This cancer doesn’t produce the marker that the normal PSA test reads.
@05271935 Some of the most aggressive PCa cells produce little or no PSA.
I met a man at my surgeon’s office who had a Gleason 10. His PSA was 1.0
@05271935
High Gleason scores with low PSA usually indicates aggressive prostate cancer. In addition to all the advice here, I recommend you seek a second opinion on your biopsy results and get a second opinion from a Genitourinary oncologist.
-
Like -
Helpful -
Hug
1 ReactionGleason 9 (4+5) discovered in July 2024. RP surgery discovered adverse factors - bladder neck invasion, cribriform, multi-focal and so on. PSA was still low (0.04) but trending in the wrong direction. I had a hormone shot (Lupron) October and 39 radiation treatments ending in February. So far in 2026 I've remained undetectable. I pushed for aggressive treatment after reading the post-op report. Next PSA in October. I have 3 more grandchildren to see graduate, cancer be damned.
-
Like -
Helpful -
Hug
4 ReactionsWelcome to this blog. You will find a lot of information and strong support from us, your fellow comrades in prostate cancer. What will be your next step?
You will now likely be scheduled for a PET Scan to see if the cancer is "prostate confined" disease, or if it may have spread outside the prostate to adjacent structures and organelles, like the two seminal vesicles or local lymph nodes, or possibly the bladder neck. The PET scan is rather simple. You are injected with a radioisotope - Gallium-68. You wait for an hour for the Gallium-68 to circulate through your body, particularly the prostate where it is specific for that cancer tissue. Then you lay down on a PET Scan table, and your body is very slowly and incrementally moved through the PET Scanner to see if there is radioactivity detected anywhere else than the prostate itself. Your scan is from your neck to your knees and takes about 40 minutes. The PET Scanner is "open", so there is no claustrophobia. The result: You hope to be told that the radioactivity was "prostate confined", meaning the tumor...no cancer cells...broke through the capsule membrane that surrounds the prostate and traveled to those other places that I mentioned.
Based on that PET Scan report, your urologist will counsel you on what the best course of action is for your particular case: likely radical prostatectomy since it is already confirmed that you have cancer already. Good luck to you...keep us posted on your progress and journey.
To end: One thing you will note is that this blog is contributed to by the men who have more difficult disease...I call us the "unlucky ones." The guys who had Gleason 3+3=6 and may have had a radical prostatectomy without complications, and resumed sexual activity quicker than most, are "not" on this blog. Everything went as well as possible for them. We on this blog, have one or more issues that make our cases ongoing and more difficult to manage...even "endure"...vs the "lucky ones" who had no issues at all. That is why this blog is of such value. You will read of all kinds of things, and the treatments, and the outcomes, etc. You are in a good place...you will learn a lot and receive a lot of support. Be well.
-
Like -
Helpful -
Hug
4 Reactions