HealingWell
Search Close Search
☰

Concerned and confused

Support Forums
>
Prostate Cancer
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 12/21/2022 7:47 AM (GMT 0)
Season greetings. I have finished my 27 month sentence with lupron with a 3 month shot in July and now I am waiting for a follow up appointment wth my urologist on January 10th. I was looking at some clinical notes and saw that my pc was classified as a ct3a disease with PNI. I don't believe my urologist ever mentioned this while explaining my diagnosis. He may have covered it but its possible I was too much in shock to hear him. Is this a game changer for me? Some of you may remember that I had a Gleason 8 which wss down graded to a 6 by Dr. Lotan at Johns Hopkins. A PSA of 35 has me placed in the high risk bracket .
Any insight would be appreciated
Posted 12/21/2022 2:50 PM (GMT 0)
I don't really have an answer for you, but I will note that over the years I have noticed my doctor's notes contain a lot of inaccuracies and supposed conversations with the doctor that never happened.
Posted 12/21/2022 3:03 PM (GMT 0)
Hope I am not stating the obvious but cT3a is the doctor’s clinical estimate based on examination, imaging, and biopsy since the prostate was not actually evaluated. PNI is not all that important and was probably noted in the biopsy pathology.

The cT3a concept is that there was EPE noted in a scan or something else that led the doctor to conclude that the PCa was not fully contained with the prostate but not in the seminal vesicles. That being said, given the original G8 and high PSA, it might have been a reasonable estimate depending on what evidence there was.

The revaluation to G6 is helpful but keep in mind that it was limited to the biopsy samples so you never know what the entirety of the prostate was. Your treatment seems appropriate and you will keep an eye on PSA for the next few years after Lupron wears off like many others. No way out of this club once you join.
Posted 12/21/2022 4:58 PM (GMT 0)
Hi Acoustic4,

Like you, my surgeon left out some areas of concern when we reviewed the pathology results over the phone back in February 2021. When I received a copy of my report in the mail, I was shocked to see I was stage T3a with bladder neck invasion. This really upset me at the time. As you can see by my signature, I am a Gleason 7 and had to follow up after surgery with salvage radiation + 6 months of Lupron. Also like you, I achieved an undetectable PSA while on Lupron which has been durable so far since my ADT has fully worn off.

The good news is that for most men with stage 3, the disease is manageable and may still be cured. From where I'm sitting, you've received the standard of care and the fact that your PSA is <0.01 is very encouraging. The next hurdle for you will be to see if your PSA remains undetectable/stable once your testosterone recovers. Time will tell, but you are where you want to be right now.

Good luck!!
Posted 12/21/2022 10:33 PM (GMT 0)
Rick I, Mattam, and Mumbo
Thank you for your responses and advice. It is true that this is one club that no one gets out of BUT the knowledge and the comfort this forum provides has no price. I was pretty freaked out when I saw those notes ( it seems that I get a little freaked out every once and a while) but I always get grounded when sharing my concerns with this forum and my wife. I have been blessed with the results of my treatment so far and I pray that the future holds equally favorable results.
My urologist and I have been confounded by my diagnosis since the jump.. G-6 and a PSA of 35 don't usually go together in the same sentence. However, here I am. The statement " your PSA is coming from somewhere" from my uro haunts me at times and I know I have to stay positive. I will let you all know the results of my follow up next month.
Thank you all again and have a wonderful holiday season!!
Posted 12/22/2022 6:18 AM (GMT 0)
Based my experiences with cancer, I’ve learned that dealing with it is like taking a trip to Vegas, but where card counting is legal. It’s all a gamble, nothing is certain, every diagnostic assessment is ultimately shades of gray, but you can make the odds more in your favor if you do the work. Exploit every weakness in the enemy. Get inside the game and outsmart it. Cheating encouraged!

Every time you beat the house you win. smile
Posted 12/22/2022 9:05 AM (GMT 0)
Gleason 6, a PSA of 35, T3a, radiation and 27 months ADT? I think you need a Decipher test of the original biopsy tissue.
Posted 12/22/2022 5:31 PM (GMT 0)
Hi Duck 2!!
Please tell me what a decipher test is and what will it tell me
Posted 1/24/2023 12:22 AM (GMT 0)
Hello, Acoustic4 ~

Sending a line today ~ hoping your January appointment went well ~ and that insight was gleaned.

How are you faring? I hope things have stabilized & I hope you are doing your best.

Just a line to let you know that others are thinking of you, and standing alongside you!

With my best ~
CYCLONE ~ # Iowa State University
Posted 1/24/2023 12:49 AM (GMT 0)
Wow Cyclone! Thank you for thinking of me. My appointment went well. PSA still undetectable and a certain “body part” is coming back to life after 18 months of ADT.
I have leaned to appreciate each day as an amazing gift.
Posted 1/24/2023 12:53 AM (GMT 0)
U-N-D-E-T-E-C-T-A-B-L-E!

So thankful to hear that!

It's a GREAT day to hear your GREAT NEWS!

CYCLONE ~ # Iowa State University
Posted 1/24/2023 12:56 AM (GMT 0)
Thank you Cyclone. I pray you also are doing well. Please keep me informed.
✚ New Topic ✚ Reply