Typical Treatment Option Question

They may put you on ADT and Abiraterone or a lutamide. They frequently do that with a Gleason nine. Radiation to the prostate might just do it, but the PSMA PET scan would let you know better if it is spread, and you need more treatment,

Having both Cribriform and Perineural invasion makes your cancer much more aggressive, and increases the chance that it will come back sooner.

Get a PSMA pet test to see if there was cancer anywhere else in your body? Once you get on ADT, it may not be detectable so get it done soon.

Radiation is definitely where you’re going to be heading. If you can get it, the MRIdian SBRT will do the least damage to tissue surrounding the prostate because it has a narrow focus.

A Gleason nine is very aggressive, There really is never a cure, but it can become a chronic disease instead of a fatal disease. Following the drug and treatment recommendations is very important to having a longer life.

You want to get yourself treated by the best, A center of Excellence like Mayo would be a good place to go so that you can get multiple people reviewing your situation. You could also go to a Genito Urinary oncologist, they specialize in prostate cancer, unlike a medical oncologist who treat everything.

Getting an hereditary, genetic test is a good idea. If you have certain genetic issues, there are new drugs to treat them. You can get one free here

Prostatecancerpromise.org

They will send you a spit tube and in about three weeks a genetic counselor will call you to discuss the results. Don’t check the box to have your doctor involved. In that case they won’t send anything until they speak to your doctor.

hi, Stew, since you have cribiform and perinural invasion, I'd want ADT without delay. Orgovyx preferrably.
It is better to have the PSMA before beginning ADT, because antiandrogen will obscure any low sign of metastasis.
Once you start antiandrogen, you'll probably have a couple of months to decide on radiation or surgery. But for now, I'd pressure the doctor involved before perineural becomes "outside the prostate." I wouldn't wait the month to see the urologist. It might be faster to notifiy the urologist that you want ADT (except maybe you don't) Send copies of your scans to several radiation Oncologists. And press to get in on a cancellation.
Are you even on schedule for a PSMA. If it takes too long to have the PSMA, I'd wait until after treatment seeing the most advantage in starting antiandrogen therapy.
If you've decided against ADT, it is to your advantage to proceed with treatment.

How bad are the side effects using Orgovyx for most people? Reading about them is scary.

Over time it causes the same issues as Lupron. Since it’s purposes to eliminate your testosterone, the side effects are due to low testosterone, not the drug itself.

Common side effects of very low testosterone
Hot flashes
Weakening of bones
Brain fog
Fatigue
Weight gain
Muscle deterioration

I agree with @gently and @jeffmarc

I had the mridian radiation machine but Elekta also has the built in MRI. This means a narrow margin which means the radiation touches less healthy tissue. You may want to consider having a spaceoar gel insert, a week or two before radiation, to widen the space between your rectum and prostate, again to minimize healthy tissue exposure and minimize side effects. The Mirage randomized trial showed that radiation machines with built in MRI vs fused images significantly reduced side effects and toxicity.

Stew80: at 72/73 I had RP, followed immediately by Salvage Radiation Treatment including 4 mos ADT; Orgovyx.

If ADT is for you, then I would suggest Orgovyx.

My primary side effect was fatigue; I called it a power reduction by 10 - 20 %. SEs dissipated 4+ mos post ADT.

And yes. I had some hot flushes and brain fog during treatment.

It seemed as if all of my age related issues became a bit more exacerbated by ADT.

Best wishes.

Not that bad Stew - others are worse. It will bring your T and PSA down FAST and put the brakes on your cancer’s activity.
There are some side effects, as others have mentioned, but forewarned is forearmed, right? Besides, Gleason 9 is aggressive and you need ADT to fight it. Best
Phil

Curious why they didn't do a PSMA Pet which looks for spread. Gently did an excellent job laying it out. Orgovyx shuts down your T in a few days but also has a shorter half life after treatment. In my recent research 10 post treatment months of zero T is linked to a better outcome. Lupron will provide that on a 6 month dose. Lupron takes 4-5 weeks to shut T down to castration levels, but they can also give you an additional shot of another drug that shuts it down in a week while the Lupron percolates. There are many options. I was diagnosed with Gleason 9 Grade 5, 3,4,5 cribriform 26 months ago. 5 weeks in on Lupron and started salvage radiation 2 weeks ago. So far pretty easy.

Not sure why re psma. They don't seem to focus on it here. Bone scan next week. I'm not sure how effective it is. Thanks for this update. Very helpful.

I am 84; My diagnosis: At least a stage IIIA high risk prostate adenocarcinoma, cT2. Gleason 4+4, 11/11 cores PSA 13.1 My PSMA PET scan "showed no sign of tumor metastases"
I recommend you check out: Citation https:" http://www.urotoday.com/video-lectures/localized-prostate-cancer/video/4525-overtreatement-of-prostate-cancer-persists-in-men-with-limited-life-expectancy-timothy-daskkivich.html"
The subject is the Trifecta method method of counseling patients. Trifecta includes 1) A patient's life expectancy;
2) A patient's cancer prognosis at the time of the patient's life expectancy because it is a time dependent risk;
3) Giving the cancer prognosis with or without treatment.
I have read Trifecta counseling is part of the NCCH guidelines - but I couldn't find them.
You need to know What your prognosis is: if you take treatment or if you don't take treatment My situation was that the aging process was reducing the quality of my life more rapidly every year; I did not want to give up the quality of my life from 84 to 86 to extend my life from 92 to 96 . The article was published after I started the ADT. The side effects of the ADT dramatically affected my ability to participate in my "normal" activities. Get all the information you can; as fast as you can before you start treatment.