Advanced prostate cancer, treated with an orchidectomy and daily apalutamide for almost 4 years.
You're doing well repeated my oncologist every three months, PSA remains less than 0.1. However, I knew different - ever since Easter I've had new pains and problems. I kept asking for a new scan as my last was two years ago, but the oncologist couldn't allow this due to my excellent PSA levels. The problems, whilst intermittent, got worse and I kept asking for a scan. I even quoted the various final reports on the effectiveness of both apalutamide and enzalutamide - both of these noted that around 50% of participants had showed radiological disease progression without a PSA rise.
Fast forward to October when I was diagnosed with chronic constipation and given copious quantities of laxitive. Two weeks later I could take the pain no longer and spent 9 hours in A&E until they took at CT scan. No constipation, but a cancer growth was blocking a ureter, causing renal colic! The urologists have given me a nephrostomy to save my kidney and alleviate the pain. They also did a PSA test to prove my point - yes it remains at less than 0.1!
The oncologist is very surprised! Has offered no apologies for letting me suffer for six months unnecessarily and allowing my cancer to progress for longer than necessary. I'm now awaiting 5 doses of radiation to hopefully shrink the cancer flare up, with the hope that then I might be able to have an internal stent rather than a nephrostomy wee bag on my leg!
So, I wasn't able to convince my oncologist that regular rescans should be taken, but perhaps with this cautionary tale you might all have better luck than me!