What should I do next?

That sounds normal for the hormone therapy. My story is similar: I was diagnosed with stage 4 prostate cancer this September. Prior to that I had blood work as part of my annual physical. My PSA normally ran around 1.1 to 1.9. Doctors were never concerned. My last PSA reading was 1.9 in February of 2022. My next blood work was in July 2024, PSA of 62!
My doctor sent me to a urologist and after he examined my prostate he told me he felt a large hard area near the top. Did a biopsy the next week. Gleason score of 4+5, sent me for a PSMA PET scan, cancer had spread up the back of my bladder, right lymph node, and into my pelvis. He immediately put me on ADT drugs, Firmagon injections plus Nubeqa (Darolutamide) tablets twice a day. As of December, my PSA is 0.4 and after about 3 more months I will start radiation on the prostate tumor first. Doctor said the cancer is now dormant and growths have shrunk. However, given the spread, it is not curable, but can be treated to keep me around for another 10 years or so. I am expecting to stay on ADT drugs for the next 2 years and have radiation along the way. Hormone therapy is no fun given all the side effects, but I lift weights 4 days per week and walk as much as I can every day. The exercise helps reduce the side effects and makes me feel more normal. I am now 71.

Thanks for sharing. Did they offer clinical trials on you? I have them calling me and no one has started my ADT yet. When you say you started immediately on ADT was that within two or three weeks? Just wondering how patient I need to be with all this as it seems like the medicine can't be picked up from CVS and instead special pharmacies.

No clinical trials, started ADT right after biopsy results, it was about 2 weeks.
These drugs are expensive, I have CVS, but it has to go to their specialty pharmacy. If you are using insurance, these drugs must be pre approved before they will fill the prescription. My doctor is good at getting the paper work in, so my approval was fast. He also gave me a sample bottle to cover me while the approval was being processed.

I didn't think to ask about a sample bottle. That's a great tip. Thanks. It's been a month since the biopsy and two weeks since the PET scan so just getting anxious. holidays are happening too so I know that doesn't help.

newtothegroup,
the anxiety about starting treatment is particularly usual. It can take some effort (and time) to get approval for orgovyx; it is a newer medication and quite expensive. I expect you'll be on it for two months before the clinical trial. They may be looking at a clinical that excludes anyone on ADT. Call the medical office and ask which clinical trial number they are considering.
Meanwhile use your worry (as you are here) to find answers.
Call your urologist to find out which clinical trials they are considering. You can then call the trial's coordinators to ascertain eligibility
Call the records office where you had the biopsy and get complete copies of the biopsy report.
Tell your urologist that you would like him to order a PSMA/PET. If you've had the PET get copies of the CD and the written report.
Ask for a Decipher Report. Those take about three weeks to return. It will give you tumor genetics. And would direct you to the best clinical trial for you.
https://clinicaltrials.ucihealth.org/?gad_source=1&gclid=Cj0KCQiAvbm7BhC5ARIsAFjwNHsVWsrlPYgv43rX_PtOQAWe3LADyezCO9he3QEUS3IRZrhuRc8RWe0aAgROEALw_wcB
Your care has been remiss. But use all of this valuable anxiety to pursue your health.
If and once you start ADT, you'll have a couple of months in the eye of the storm to pursue information and make choices.
Keep posting here.

No other treatment besides antibiotics. Prostate removal or radiation, before this point

The doctor that has been treating me for the last year is the person running the clinical that he wants to add me to. It is only for metastatic prostate patients I believe. I have to ask for more information. Just felt like I wished that a biopsy was ordered three months ago when my PSA was 90. Thanks for the help all.

I was told it was just a current inflammation so only antibiotics were needed. I didn't know to ask for a biopsy. I did ask if it was cancer but they said it was a recurring infection.

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.

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.