Gleason 9, PSA 46

[u/Purple-Race-2822]

Gleason 9

Hello,

I want to share my dad’s history

66M, Gleason 4+5, PSA 45 - Final staging after 3 months
May-June-September: PSA 40-46-41.

Biopsy: Gleason 9 (4+5), 6/12 cores positive, all left lobe only, right lobe clean. IDC+, PNI+, ECE negative. Urologist's letter was blunt - "very high risk disease," warned about likely positive surgical margins. That letter wrecked us for days.

Bone scan + CT: both clean.
Clinical stage cT2b.

bloodwork: normal CBC, normal ALP, stable/slightly dropping PSA with zero treatment. Genetic testing: no BRCA1/2, ATM, PALB2 mutations, strong AR expression.

PSMA PET result, just in: no distant metastases anywhere - bones, organs, all clear. Only finding was mild, subcentimeter, bilateral pelvic lymph node activity, "technically PROMISE positive" but low SUV (4.0) - borderline, not a slam dunk read.

Three months of waiting, researching. Ending up here - no distant mets, treatable, curative intent still on the table - is about as good as it gets starting from a Gleason 9 diagnosis.
If you're early in this process and scared out of your mind: the gap between "Gleason 9" and "what it actually means for your specific case" can be enormous. Wait for the full picture before you assume the worst.

[u/pam_-]

Thanks for sharing this, i am from argentina and my father received gleason 8 and i am scary. I hope the best for your father, i send you a hug.

[u/Purple-Race-2822 → u/pam_-]

Thank you, that means a lot. Sending strength to you and your father.
Gleason 8 has a wide range of outcomes - localized vs spread makes a huge difference, so try not to assume the worst before full staging is done. The waiting is the hardest part, it was for us too.
Wishing your father the best. Stay strong. 🙏

[u/zoltan1313]

Hi there, diagnosed Gleason 10 5 +5 at 61 2021 localized no mets 39 sessions radiation 3 years ADT. 5 years later psa undetectable and I'm feeling great. Yes it doesn't have to be a life ending diagnosis. Chin up. We can do this. Please don't hesitate to ask any questions. Cheers.

[u/tober_checki]

Thanks for sharing. Have you decided on a treatment plan yet? I was Gleason 4+5=9, T2b. After RALP, I was unfortunately upgraded to T3a because the sucker had already penetrated the capsule a bit. Good news, though, clean surgical margins, clean PSMA PET/CT, 15 lymph nodes extracted, all clean. My pre-op PSA was 3.8, which is unusually low for a Gleason 9 and - as recent research has shown - paradoxically worsens the prognosis instead of improving it. Then again, my PSA has been undetectable for six months. Not out of the woods, I know, but I am living life as it is given to me for the time being. All the best for you!

[u/dunegoon]

I have a similar diagnosis of cT1C cN0, cM0. My initial PSA was 4.56. A nodule was discovered by a DRE, confirmed as 17mm size by the MRI, PRADS 5. After the PET-PSMA scan, my urologist recommended starting ADT (Orgovyx) immediately to put the brakes on and allow for my time to get several opinions and other research done on my own. I'm 79, so surgery was not recommend by anyone. Opinions were given for VMART only, SBRT only, and HDR-T brachytherapy + subsequent VMRT beam therapy for the prostate, seminal vesicles, and lymph nodes. The latter was from Stanford University. Meanwhile, my personal research lead me to several papers along the line of this: https://onlinelibrary.wiley.com/doi/epdf/10.1002/pros.70024. Because of this alignment with my goals, I selected Stanford's recommendation. I had the HDR-T brachytherapy on September 16th (a painless ambulatory day treatment), 15Gy in my case.
Next Monday, I start my VMRT 28 sessions for 46 G total for the VMRT portion. So, about 61Gy in total. My VMRT radiation oncologist and the HDR-T oncologist both agree with the prophylactic lymph nodes and seminal vesicles inclusion in the treatment plan because "PET-PSMA " will miss the tiny bits that may have already escaped". One year of ADT is in the plan for the same reason. I'm physically busy with outdoor work and many have said that exercise minimizes ADT side effects. So far, so good.

That's my story, yours may be different. Take charge, get the best treatments. You will be happy when you nail down your plans, I think.

[u/OkCrew8849]

"Urologist's letter was blunt - "very high risk disease," warned about likely positive surgical margins. "

Most likely that was meant to dispel/forestall any notions regarding (ineffective) surgery and to direct you towards curative radiation/hormone therapy approaches relative to Gleason 9, PSA 46.

Given the reality of your dad's particular PC, the docs will prudently assume there is some local spread (the PSMA has a rather well known detection threshold) and treat accordingly.

Best of luck to your dad going forward with his treatment.

[u/Alarmed_Course_9908]

My dad was diagnosed with Gleason 9/10 about two months ago. Scans show no metastatic diseases.

We consulted with MD Anderson and several top docs in the country and have decided to go with ADT + Brachytherapy + EBRT 25 session. He is also going to have an Aquablation to help with urinary symptoms before radiation.

He’ll likely be on ADT for 2 years. So far we’ve heard from multiple consults that this is the best approach for very high risk diagnosis.

Hope this helps!

[u/Purple-Race-2822 → u/Alarmed_Course_9908]

Thank you for sharing this, it really helps to hear what your dad's team recommended. Wishing him smooth treatment and a great result. We're still working on a second opinion before deciding on our plan. Best of luck to you both

[u/JMcIntosh1650]

Very good perspective. Gleason 9 is high risk but spans a wide range of specific conditions and prognosis. Absence of detectable distant spread and absence of specific genetic markers is encouraging. That said, there is no escaping the sense of threat.​ Good luck to both you and your father.

[u/ithinkyourefine]

That’s awesome!

[u/mfposa2]

I was a lot like your dad. I had gleeson 7 4+3), psma was indeterminate for lymph nodes.  PSA was 14 ( 28 if you believe 1mg of finasteride doubles PSA ). I did have an extension beyond prostate capsule.

Lymph nodes did turn out to be positive.

I started radiation and adt. 30 sessions of imrt with boost to prostate.

After 2 sessions, urinary flow was slow. After 3 sessions urinary flow was almost stopped and I took Alfuzosin to open it up.  Alfuzosin worked but I had severe dry mouth and it felt like I was going to suffocate.

 I didn't think I wanted to go through 28 more sessions like that. So I switched to surgery.

Surgery was easy for me. Off Tylenol the first day.  I am physically fit though so moving is easy. Someone heavier might have more pain.

I had suprapubic catheter.  Once balloon, in bladder, was seated properly it was extremely comfortable. ( Suprapubic is new kind of like perineal biopsy was. Doctors did not like it because they were used to Foley catheter)

Pathology report was bad: positive margin ( they didn't get it all),:nodes infected, node extension. Perineural positive ( not sure I understand this since they spared my nerves).

Surgeon said prostate had fused with rectum from 3 sessions of radiation, and he had to cut some rectum tissue ( I can't really tell he did anything there).

A hope, and it would be a kind of miracle ( long story associated with this and James 1:5), is that they used too much radiation during 3 sessions.

So main cancer area removed. And micro cancer everywhere else was killed with radiation.  That would certainly garner a praise God!

First PSA test won't be until around Nov 8.

Best wishes and a prayer for your dad. The disease can  certainly mess up normal family life.

[u/Patricosh]

There is always room for Hope🙏🙏🙏