Living with Prostate Cancer: Meet others & introduce yourself

Hello, dear friends!
My name is Denis, 49 year old.

My story

When I was 47, I was diagnosed with prostate cancer after an abdominal ultrasound. I started urinating frequently.
I had tests (PSA, bone scan, chest X-ray, prostate MRI, and prostate biopsy), and they showed a PSA level of 531 (Gleason 4+5), three bone metastases (rib, pelvis, and elsewhere), and lymph nodes (groin, cervical, and lungs).

Then my oncologist sent me for genetic testing, which revealed a mutation in the ATM gene. In other words, the cancer was hereditary. My father didn't have prostate cancer, but my grandmother did, and it most likely affected me.

The doctors refused surgery and said that if they removed the tumor, the cancer would quickly kill me. I listened to them and began treatment.

In the first month (only the first month), I took bicalutamide tablets and was given Zoladex 10.8 injections (every three months). I also completed six cycles of docitaxel chemotherapy over the course of six months.

After six months of treatment, my PSA dropped from 530 to 18.

I had a Positron Emission Tomography (PET) scan in August 2024, which showed a reduction in the size of the metastases in my lymph nodes and bones. The primary tumor in my prostate remained almost intact, having only shrunk slightly.

In September 2024, the doctors held another consultation and prescribed two more courses of Docitaxel chemotherapy, after which my PSA dropped further to 6. The cancer persisted.

Throughout this time, I was receiving Zoladex 10.8 injections.

In January 2025, I had another Positron Emission Tomography (PET) scan, which showed a significant reduction in the size of the lymph node metastases and the complete disappearance of the bone metastases. The primary tumor remained virtually intact, with only a 10% change in expression.

In February 2025, We had a third consultation, after which I was prescribed and start apalutamide, which I've been taking for almost a year, and Zoladex was replaced with Diphereline 3.75 (injections every month).

@jeffmarc
Thanks for your reply. Yes, cribriform glands were present. No seminal vesicle invasion, EPE or ECE. There was PNI (Perineural invasion) I’m meeting with my doctor on Monday. I presume he will schedule a PSMA/Pet scan and discuss treatment.

@denis76 It seems like removing the primary tumor with radiation or prostatectomy would be advisable.

Hello, dear friends!
My name is Denis, 49 year old.

My story

When I was 47, I was diagnosed with prostate cancer after an abdominal ultrasound. I started urinating frequently.
I had tests (PSA, bone scan, chest X-ray, prostate MRI, and prostate biopsy), and they showed a PSA level of 531 (Gleason 4+5), three bone metastases (rib, pelvis, and elsewhere), and lymph nodes (groin, cervical, and lungs).

Then my oncologist sent me for genetic testing, which revealed a mutation in the ATM gene. In other words, the cancer was hereditary. My father didn't have prostate cancer, but my grandmother did, and it most likely affected me.

The doctors refused surgery and said that if they removed the tumor, the cancer would quickly kill me. I listened to them and began treatment.

In the first month (only the first month), I took bicalutamide tablets and was given Zoladex 10.8 injections (every three months). I also completed six cycles of docitaxel chemotherapy over the course of six months.

After six months of treatment, my PSA dropped from 530 to 18.

I had a Positron Emission Tomography (PET) scan in August 2024, which showed a reduction in the size of the metastases in my lymph nodes and bones. The primary tumor in my prostate remained almost intact, having only shrunk slightly.

In September 2024, the doctors held another consultation and prescribed two more courses of Docitaxel chemotherapy, after which my PSA dropped further to 6. The cancer persisted.

Throughout this time, I was receiving Zoladex 10.8 injections.

In January 2025, I had another Positron Emission Tomography (PET) scan, which showed a significant reduction in the size of the lymph node metastases and the complete disappearance of the bone metastases. The primary tumor remained virtually intact, with only a 10% change in expression.

In February 2025, We had a third consultation, after which I was prescribed and start apalutamide, which I've been taking for almost a year, and Zoladex was replaced with Diphereline 3.75 (injections every month).

@jeffmarc SVI

Hello Colleen,
I have never seen this kind of introductory post from anyone designated as the moderator, especially someone who is a woman. I don't mean that to be a sexist comment, but I do find it unusual, just as I would if there was a male moderator for a women's breast cancer blog. So, to that end, please tell all of us your story. I can only assume that your husband, father, grandfather, brother, or uncle may have had prostate cancer, and that their journey motivated you to become involved in this life threatening male cancer.
Thank you.

@csimadera1
I was on Lupron for six years and Orgovyx For three years. The drugs do the same thing and cause pretty much the same side effects.

Nubeqa is a good option. After six months, you may be able to stop Orgovyx since you are a 4+3.

You could do that and see if your PSA starts to rise again. If you were to stay on Nubeqa It probably would not rise for a long time, But it would make sense to stop both drugs and see how you’re doing.

The guidelines say that unless you have other aggressive issues, six months is enough ADT.

Were any of these things found in the biopsy intraductal, cribriform, Seminal vesicle invasion, EPE or ECE. (Extraprostatic extensions extra capsular extensions). They can make the cancer much more aggressive and extend the amount of time you need to be on ADT.