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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.
Replies to "It sounds to me like you need to find a new doctor. Do you have ability..."
@jeffmarc, I appreciate your conviction and enthusiasm when sharing experience and even advice. Keep in mind the golden rule on Mayo Clinic Connect and don't tell members what the "should" or "must" do.
- Community Guidelines: https://connect.mayoclinic.org/blog/about-connect/tab/community-guidelines/
@newtothegroup, I'd like to add my welcome. You've gotten a lot of great advice from many members. As you've already discovered, making decisions in the prostate cancer world is a lot. It's a steep learning curve. It can help to hear from others when preparing for appointments with your medical team and to know what questions to ask. Ultimately the journey is yours and may have variations, depending not only on your cancer, but your preferences.
As Jeffmarc and others have suggested, you might wish to consider a second opinion. If your local hospital has connection with MDAnderson, you might wish to go to the expert team at MDAnderson for an evaluation and treatment plan and the treatment could be administered locally. Or is the cancer center with associations to MDAnderson where you are going for a second opinion?
I did have a PSMA pet scan which showed the spread to lymph nodes. Thanks for the info.
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Thank you. I will plan on joining in Tuesday. Also, I reached out to start the process with a local hospital cancer center that has associations to MD Anderson.