Metastatic Prostate Cancer

Hello! I'm new to this site, discovered it while doing online research.

I was diagnosed with prostate cancer in 2011, had radiation brachytherapy in 2012 which appeared to be effective and I thought I was good to go. Unfortunately, after 9 years, the prostate cancer came back earlier this year, not in the prostate but metastasized on my spine, hip bone, and one lymph node. I was freaking out, and the urologist wasn't all that optimistic, referred to it as "advanced PC". After consultation with a radiation oncologist, they came up with a treatment plan of hormone treatment (initial dose of Casodex followed by 6-month dose of Lupron) combined with external radiation therapy on spine and hip bone -- they want to hold off on lymph node for now as it's very small and they are hoping the hormone treatment may be sufficient.

Radiation and hormone treatments

The radiation went well, I had 3 Cyberknife treatments per spot with the only side effects being mild fatigue for a couple of days and a burning sensation near my chest after the spine treatment.

Hormone treatments also appear to be working effectively, PSA has been less than 0.1 for 3+ months and testosterone is very low as well. Unfortunately, all that comes with some major side effects from the Lupron, the worst being the constant hot flashes, 7-8 or more per day, and at night, which makes it difficult to sleep. Also, blood sugar frequently runs very high, considerably more tired and less stamina than before, ongoing digestive issues, frequent urination and slow stream at times, breast swelling/tenderness, and periodic anxiety and irritability. My quality of life has definitely deteriorated and some days it's hard to function normally.

The doctors sort of have the attitude of "well, we know it's hard, but it's better than the alternative", which is not very reassuring or helpful, and they have no real solutions to counter the side effects other than to just live with them.

What's next for me?

The initial plan was do to another PT Scan (Axumin) around now, about 6 months after the treatments began, to see how the treatments are working. But for some reason they've now have decided to do another 6-month dose of Lupron, to be administered in a couple of weeks, and then do the Axumin scan in about 5-6 months. The urologist said they want to make sure any additional cancer cells still floating around don't attach somewhere and start growing since the Lupron starves them of testosterone. I'm meeting with the oncologist in a few weeks and will discuss it further with him. I understand the rationale, but I'm frustrated by the delay since I'm still very anxious to know whether the treatments are working, especially on the lymph node spot that didn't get radiation. And I'm frustrated at having to go through another 6 months of Lupron side effects.

I feel fortunate to have found this site, which seems to have a lot of good information to help in getting through this process.

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