Living with Prostate Cancer: Meet others & introduce yourself

@jap57 my husband has been on a couple different HDT medications. Restarted Lupron and has continued therapy for the last four years as well, will stay on it until insurance no longer covers it. My question is, how often are your bone scans and MRI’s scheduled, and have you experienced bone issues. The side effects of HDT are horrible for my husband.

@jeffmarc thanks. PSA remains undetectable. PET and bone density scan coming up this month. Oncologist said PET would detect bone mets.

@looloo2
Bone density scans are what they give you every two years.

The bone scan for metastasis you can get more often.

I hope your husband‘s PSA stays low.

@jeffmarc thanks for responding. My husband diagnosed 10 years ago stage 4 Gleason score 9 metastatic. Proton focal radiation twice. Recurrence after 2 years post discontinuing Lupron. PET scans every 6 mos. They were every 3 mos., but PSA undetectable and insurance won’t cover every 3. Bone scan only every two years. Journey has been rough. Hope the best for you.

@looloo2
Hi doctor has me do bone scans and CT’s every six months. That’s as long as my PSA stays undetectable. We’re to start rise then I would probably get a PSMA PET scan pretty soon.

@jap57 my husband has been on a couple different HDT medications. Restarted Lupron and has continued therapy for the last four years as well, will stay on it until insurance no longer covers it. My question is, how often are your bone scans and MRI’s scheduled, and have you experienced bone issues. The side effects of HDT are horrible for my husband.

I have had radiation two different times at Mayo. Neither time was proton beam, did not even suggest it as an option, so I disagree with you that they “sell” Proton beam treatment. I have been on Lupron for over 4 years now. Yes there are side effects but I am alive.

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).