What should I do next?

It sounds to me like you need to find a new doctor. Do you have ability to go to a center of excellence where there are multiple doctors who can review your treatment options? You should be set up for treatment besides orgovyx. You should be seeing a radiation oncologist to find out what they can do with radiation. Considering how serious your cancer is, I would recommend finding a Genito urinary Oncologist, They specialize in prostate cancer, unlike medical oncologist. You will get much better care from one of those type of doctors. I would highly recommend you come to one of the Ancan.org Weekly meetings. There will be one next Tuesday at 6 PM Eastern time. Go to the website and find out about it. They can give you some really expert advice, and there are usually three doctors in the meetings. Get there early five or 10 minutes before the meeting starts and you will be the first one they talk to and give advice to about your options

You should not start Orgovyx Until after you have had a PSMA pet scan. You mentioned the results of a scan, was that a PSMA pet scan? If you did not have that type of scan then you want to find out if there’s cancer in more places in your body and that is the way to do it? Let your doctor know you really want to get that scan, before you start Orgovyx. Orgovyx Will reduce your PSA and make it harder for the PET scan to see cancer in your body.

When your PSA hit 90 your doctor should have done a biopsy. You actually should’ve been tested more frequently as well. At a recent Ancan.org Online meeting, a doctor who’s a regular, talked about his urologist who finally figured out he had prostate cancer. While his PSA was rising, his doctor didn’t do anything and said everything was OK Once the PSA really got excessive, he finally got a biopsy, but it was a little too late and he had a serious amount of cancer. You are not alone in getting poor answers from a urologist.

When you get on Orgovyx it will stop your cancer from growing, at least for a short time. . You need to get a PSA test within one month of starting Orgovyx. Just to make sure it’s working. With your high Gleason score, I would recommend monthly PSA tests because your cancer might be able to get around Orgovyx sooner. Your urologist might not be aware of this, find an GU oncologist or a center of excellence, Your cancer is way beyond the expertise of a urologist.

I always thought these were antibiotics but it is called finasteride that was prescribed that I been taking for almost three years due to my original problem.

Just writing down all my medicine now based on the recommendations here.

Long term finasteride is a very confusing issue when it comes to higher grade cancers - which you probably have. It has been shown to be effective in reducing PSA in men with lower grade (Gleason 6) cancers, but NOT in those with higher grades (Gleason 7 or more). This should have been a tip off to your doctor when your PSA remained higher than normal.
My friend just finished Cyberknife at Sloan Kettering. He was having trouble urinating so his doctor put him on finasteride, which really helped. However, once treatment was completed and he had been urinating comfortably for about a month, the doctor immediately stopped the drug because she said that in his case (Gleason4+3) the drug could actually help the cancer grow and since they still don’t know why, they weren’t taking any chances.
So your doctor putting you on this for 3 years - especially without a biopsy - was just plain wrong and in my opinion, irresponsible. Again, I am NOT an oncologist but I do know how to read a study and I do know what my friend’s doctor from a leading cancer institute told him about finasteride.
Listen to all the good advice the guys and Colleen have offered, get yourself in better medical hands, and please tell your doctors the EXACT medicines you are taking. I know you are probably freaking out right now, but you gotta stay calm if you are going to plan the best course of action.
One of the findings in the finasteride study I referenced showed NO INCREASE in mortality for the men (like you) who had higher grade cancers. In other words, your chances of dying from this are the same as the men with the lower grade cancers, which is a big plus! But the treatment you get NOW is the deciding factor in your survival. You CANNOT screw around with anything less than the best care teams out there. Your life depends on it!
Phil

Thanks Phil. I have put in my request for a center of excellence appointments for a Texas based hospitals. I don't know if Medicare pays for out of state telehealth which would open up more potential opportunities here. I am going to ask them.

I can confirm that no one ever recommended a biopsy. I asked about cancer for the past three years. My dad passed away from what we believed to be complications from prostate cancer when he was 84. Therefore, it been on my mind. I didn't go for one visit as I had a stroke and was hospitalized. Outside of that, I been diligent about not missing appointments for past three years. I have never gone online to google things and I never asked for more than what the doctor recommended or suggested.

Thanks for the honest feedback here all. I been upset over last two weeks since PET scan results as I googled things but trying to funnel my focus on what I should do now. I just keep asking how I got here when I thought I was doing "good" by showing up each appointment and listening to my doctor's recommendations.

Any additional information that folks can offer on how to get the center of excellence telehealth appointments set up that would be appreciated. Also, I looked into the Somantic genetic testing and seems like insurance will pay. Do I call my doctor or just the biopsy location to request this? I got lot of things to do on Monday but that's good and will keep my brain busy. My prescription for Oxyxyz (spelling?) came in late Friday and I plan to start it later today or tomorrow morning.

Hi all.

I have got binder in order with all my medication and records that I have to date. I have two second opinions set up - one with MD Anderson urologist oncologist that I will need to be out of town and another local hospital medical oncologist that does work on prostate. I got a January appointment for one and February for another. My current urologist doctor will see me again in three months to check on my status on ADT. I am also getting a 2md appointment for an overall consultation on their thoughts.

As far genetic tests. I am doing the free spit one, but my current doctor also ordered a Myriad MyChoice one on the biopsy. I assume that is the same as a decipher test? Anyone know if one better than the other. Should I still push for decipher. Those results should be back in ten days.
I wasn't planning on getting any further opinions unless others thought the more the better. .