Stage 4 prostate cancer for 7 years now

For most of us prostate cancer is a chronic disease not a deadly disease.

In 2010 I was 62 and a biopsy showed Gleason 3+4. My father died of prostate cancer and he had radiation so I decided to have surgery. After surgery they told me it was a Gleason 4+3. It was only stage two. 3.5 Years later it came back, I had a Lupron shot 2 months before 8+ weeks of radiation. 2 1/2 years later it came back and I went on Lupron. I became castrate resistant 2.5 years later and added biclautamide. 1.25 years later went on Zytiga, which kept my PSA down for 2 1/2 years. After some AFIB Issues I switched over to Nubeqa. The last 31 months I’ve been undetectable. I became stage four about six years ago, had a metastasis on my spine zapped 3 years ago. I did not find out I was BRCA2 Until five years ago. That’s why it keeps coming back, I’ve had four reoccurrences.

I’ve been castrate resistant for six years and the median lifespan is supposed to be two years. I have been on ADT for eight years and Orgovyx and Nubeqa for the last three. The drugs we have today work very well.

Any doctor that tells you how long you are going to live may need to find a new profession. I know people with Gleason nine that had many metastasis that are still around 10 and 15 years later. I’ve heard from people that were Gleason nine, had treatment, and come into online forums After 15, 20 And 25 years only to say that its come back and wanting to know what they should do.

At this point getting on ADT and a drug like Nubeqa (Which causes no side effects for most people) Could keep you going for years.

Have you had hereditary, genetic testing? There are treatments for genetic problems, There’s one I can take when the current drugs I’m on stopped working. You should also have a somatic genetic test. They testyour blood or tissue to see if there are genetic changes there. The drugs can work with those too.

If you don’t have genetic issues, you have the options of Pluvicto or chemo. They can get people going for more years. Hopefully, you are working with a center of excellence and have a Genito urinary oncologist working with you. They’re the one that specialize in prostate cancer, not like a normal medical oncologist that doesn’t specialize and work with all different types of cancer. You are way beyond the expertise of a urologist or a radiation oncologist.

read jeff Marchi's comments..heis very knowledgeable...I agree, you may need new oncology team..I agree with jeff, Nubeqa sounds like a very good next step for you..I think you will be around quite a while longer !

Please hit it hard after PSMA. What about both triple therapy and radiation if deemed necessary?

I assume you mean you stopped ADT 6 months ago and your PSA went from 0.30 to 0.68?!? There is no surprise here. ADT was keeping your disease in check and now it's not. PSMA PET scan will find where it is. What can be targeted will be (SBRT or the like). What cannot be targeted will require systemic therapy. (ADT/ARSI, chemo, etc.)

To keep it simple:
Step 1 - Find it. (PSMA PET)
Step 2 - Kill / Control it. (radiation, ADT/ARSI, chemo, etc.)

Best wishes!

@jeffmarc Hi,
I do appreciate your posting. There cannot be more similarities in our cases. My Gleason values were 3+4 prior the surgery but they changed to 4+3 after the surgery. These values both add to 7, but I learned 4+3 is worse.
I will review your message further before I see my oncologist. New medications have come to be effective extending the survival time for cancer patients.
Thank you for sharing.

@mjp0512 Thank you for your attention. During my 10 years treatment after surgery, I have had 4 Pets scans and only in 2023 one result showed a small cist in my pelvic and it was treated with 5 radiation sessions. Most PET scans have found nothing; with and without contrast.