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Questions about Gleason 9 treatment and second opinions

Posted by byelliq6 @byelliq6, Apr 15 1:20pm

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.

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byelliq6 | @byelliq6 | May 9 6:54pm
In reply to @retireddoc "Welcome and sorry you have joined the club. I am a retired Radiologist who knew a..." + (show)
Profile picture for retireddoc @retireddoc

Welcome and sorry you have joined the club. I am a retired Radiologist who knew a reasonable amount about prostate cancer learned during my career but have gained most of my knowledge since diagnosed with G9 in 2021 at the age of 67. Otherwise, healthy.

After my diagnosis in 08/21 I extensively read and used my professional contacts to obtain multiple opinions for treatment- RP vs radiation. My cancer appeared confined to my prostate by MRI and pre op tests. I choose surgery because: 1) I wanted the cancer out ASAP; the longer it was there the greater the chance of metastasis, 2) I wanted direct visualization of the cancer at surgery to stage extent of disease, 3) I wanted to hold in abeyance the radiation option for local recurrence. Surgery after radiation is very difficult because of the extensive scarring and complication rate increases.

My RP in 10/21 went fine. Minimal capsular extension with involvement of seminal vesicles (not good). My PSA 6 weeks post op was 0.016. Unfortunately, 3 months later it increased to 0.37. PSMA PET revealed a solitary T8 (spine) met. I received SBRT (radiation) to that vertebral body with good result. Still on no meds.

Three months later my PSA had doubled/doubled/doubled to 4.6. Repeat PET revealed a new node in my pelvis but no activity at T8. Presumed micromets given the PSA rise. Again, I did extensive research and had a Zoom consult with Dr. Ken Pienta (medical oncologist) and Diane Reyes NP at Johns Hopkins. I emailed Diane ( after I read a journal article by them called Total Eradication Therapy -who wouldn't want that!!) and got a response within one day. She offered a Zoom consult 3 days later on Monday morning. They spent an hour with me (couldn't charge because out of state Zoom-they did it anyway). Dr. Pienta actually recommended Dr. Sartor and Moffitt Cancer Center in Florida because they individualize treatment. I asked if he would treat me and Diane in the background is nodding her head yes. I liked what he said and asked if he would treat me. His response was "Charge!". He immediately put me on Lupron and Darolutamide and scheduled my chemo with Taxotere (triple therapy). I have never experienced such rapid response and professionalism from Dr. Pienta, Diane and Hopkins in general. I was getting a flurry of emails from Diane about getting my path for second review, medical records, scheduling my treatments etc.

My triple therapy was complete in 3 months. I had whole pelvic radiation 3 months after completion of my chemo). My PSA went undetectable after 2nd chemo treatment. No significant side effects. He discontinued my Lupron after a year. PSA remained undetectable for 3 years. He put me on testosterone replacement therapy (TRT) after 2 years because my testosterone didn't recover. He doesn't believe in extended/lifelong testosterone suppression. (As an aside, I know TRT is controversial. But I fully trust his opinion. He is the research Director of the Brady Urologic Institute at JH. He only treats prostate cancer. He is full professor in 3 departments at JH.He understands I want to live as long as possible weighing the side effects of treatment.)

I gained complete continence 6 months after my surgery. Unfortunately, I have become partially incontinent following the radiation. I have complete ED (but treatable).

My cancer was upgraded from a G8 to a 9 on review at JH. My MO said it really didn't matter as far as prognosis goes; G 8,9 and 10 are all treated the same.

There is much more I could say but I will leave it there. I reached out to about a dozen friends and referred strangers to talk about their experience with prostate cancer. It was helpful and comforting to me. I have paid it forward the last 5 years. If you want to talk with me directly don't hesitate to private message me and I'll give you my number.

Good luck. Fortunately there are many treatments for prostate cancer and more are coming. Hang in there.

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@retireddoc

Thank you for the information it is extremely helpful if and when I need follow up treatment. I chose surgery for the very same 3 reasons you outlined above. Over the last two weeks I’ve been flying around meeting with various experts with regards to surgery and radiation. I was not able to get much traction with the remote telemedicine opinions.

At this time I am in route to Mayo in MN for surgery in two days. I was there last week and impressed by the surgeon and facility. So in two days I’ll have a Full prostatechtomy and bilateral lymphadenectomy. Anxious to get the post op outlook and move
Forward.

Thank you and thank everyone for the advice, information and goodwill.

One step at a time.

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retireddoc | @retireddoc | May 10 10:45am

I wish you the best.

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rlpostrp | @rlpostrp | May 10 8:34pm

Depending where you live...seek the biggest, best academic/medical school hospital where all of the best, most current research and practices occur. If you don't live in reasonable proximity to one, have your biopsy slides sent to one. Send them to the sponsor of this Blog: Mayo Clinic. Send them to Cleveland Clinic, Johns Hopkins, UCLA Medical Center, etc. Find the best. Your life depends on it. Good luck to you.

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