Update and question
I was diagnosed Gleason 9 last week and negative result of PMSA PET scan received this morning. No abnormalities seen in prostate area or distant metastases. No seminal vesicle involvement, swelling of pelvic lymph nodes, or any activity beyond the prostate.
Thank you for all the encouragement from my previous post! I know this is a journey I'll always be on and so appreciate the brotherhood of this group.
I have an appointment with Northern Colorado Urologist this afternoon and another with Mayo in Rochester next Tuesday. I'm reading Dr. Walsh's book to help take this next step.
Anybody have advice on how to take this next step, questions to ask, etc?
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When you say “…. No abnormalities seen in prostate are….” do you mean that the PSMA PET scan didn’t detect any lesion(s) even in the prostate?
> if it did, ask what the SUVmax score was.
Did the MRI or biopsy reports mention anything about cribriform pattern, perineural invasion, Intraductal carcinoma, extracapsular extension, or seminal vesicle invasion?
What did the biomarker (genomic) and genetic (germline) tests show?
Have you started reviewing appropriate treatment options?
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3 ReactionsAs you know, Gleason nine is very aggressive. That frequently means that you will have a reoccurrence at some point. I know people with Gleason nine that have gone 20 or 30 years after treatment without a reoccurrence. I know other people with Gleason nine that have not been as fortunate And get metastasis within a short amount of time. Even then, though, they can live for a decade and more.
The important question is were any of these things found in the biopsy intraductal, cribriform, Seminal vesicle invasion, EPE or ECE. (Extraprostatic extensions extra capsular extensions)
Any of these can make your cancer more aggressive, even with a Gleason nine. With some of them surgery is preferable because then you can have radiation when you have a reoccurrence.
That’s something you need to think about, since Gleason nine means you will probably have a reoccurrence at some point. Discuss with your doctor whether surgery makes more sense because then you can have radiation if it comes back. If you have radiation, then you cannot radiate the same area again. If you get a metastasis somewhere else, you can use radiation on it. They usually use SBRT radiation in those situations.
You want to discuss with the doctor whether you need ADT. The NCCN, which sets the standards for prostate cancer treatment, recommend 24 months of ADT if you have a Gleason nine. The problem is that just being on ADT can cause you to become castrate resistant, Something you don’t want since it means that your median survival is two years (I’ve been that way for six years). If you add an ARPI drug like abiraterone or one of the lutamides They can greatly extend the amount of time it takes to become castrate resistant, So that is preferable. As there is a lot of research and documentation about this issue, Something you need to talk to the doctor about.
This is not something you want to discuss with a urologist you need to discuss this with an Oncologist, preferably a Genito urinary oncologist, They specialize in prostate cancer. If you are going to the Mayo clinic, Dr. Heath at Rochester is As good as you can find for someone to talk to. She is an expert in advanced prostate cancer and you really want to have the best treatment you can get.
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4 ReactionsCongratulations on a clear PSMA PET scan! With Gleason 9, you still have a journey ahead of you, but that's a *huge* victory (hopefully the first of many).
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4 ReactionsAs Jeff says, Gleason 9 is high risk. I was a Gleason 10 and had a robot-assisted radical prostatectomy this October. Post-surgery news is good. I will be watching my PSA for the rest of my life regardless of the treatment I chose. After talking to the doctors and my own research, I decided total removal was the best option to help lessen the chance of reoccurrence and provide more options should it reoccur. And the consequences - incontinence, ED, ect. (all of which will most likely improve with time) were for me, less than the other treatment options. As others have said, all of us weigh the factors differently and will do what we think is best. Research and working with your doctors are key to your informed decision. I sat down and talked everything over with my wife, who has been very supportive, and decided on the way forward. Discussion with whomever is in your life helps. Best to you and yours. Dave.
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3 Reactions@brianjarvis The scan identified all the PC is contained in the prostate. None of the other items were identified in the scan report. Just starting to review treatment options. Will be talking to my urologist and Mayo about genomic and germline testing.
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2 Reactions@superjk47 That’s good that it’s all contained. The SUVmax score (of the lesion in the prostate) from the PSMA PET scan report is another indicator of the aggressiveness of the prostate cancer. That also helps in the treatment decision.
Good luck with your discussions and treatment decisions.
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2 ReactionsIt is my understanding that Gleason 9 without evidence of metastasis is treated with radiation not surgery. In fact
UCLA even provides SBRT and HD brachytherapy. One European study of 'high dose' brachytherapy (temporary) versus 'low dose' (permanent 'seeds') [LD] brachytherapy showed a slight nod to HD based on side effects. People with back pain and or general anesthesia issues may not be suitable for the HD procedure(s) There was no mention of pre procedure evaluation with the UCLA derived ProsTOX or similar test which helps determine who might be more or less likely to have delayed term urinary side effects [RTOG >2?], i.e., SBRT. The skill set of providers in the multi-center test is unlcear.
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4 ReactionsThank you @thmssllvn !
@superjk47 I'm also in Colorado and the doctor I used is one of the most experienced Da Vinci doctors in the country, having started using it when it was first used in medicine - however he's in Highlands Ranch rather than Northern Colorado - but if you are talking to Mayo in NY then it sounds like travel is not a problem for you.
Thank you @survivor5280 !
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