Nov 2007 I had DaVinci surgery Gleason 7. I got the surgeon's notes and he said margins were clear, took s bunch of lymph glands, all clear. Held my dick in his hand and said it would come back. It did, but never quite lost the "happy bladder" and I shot pee about 50% of the time.
PSA never went to 0 and due to a change in insurance and some confusion over diagnostic vs. follow-up testing there was a gap of a few yrs. in testing. By 2013 PSA had gone up to over 7. The PET scan showed a concentration in a seminal vessicle bed and they determined that since it didn't show up anywhere else they could do a cyberknife treatment. That seemed to go well, but PSA never went to 0 and 3 yrs later it was up again. They did another cyberknife treatment and put me on a luprolide. Which kept things slow, but still not 0.
June July 2022 I began walking into things on my left side--poles, tables, planters, people and had two sideswipe incidents. My ophthalmologist verified there was a visual deficit on the left side, but no evidence of glaucoma. She sent it to a neuro-ophthalmologist--his response--get him an MRI. Towards the end of the MRI a young tech came up and took my hand and said they had a preliminary look and he was to walk me down to the ER for further evaluation. 17 hrs later I had an appointment with a neurosurgeon. There was a 6x4 cm cystic tumor pressing on the occipital lobe. That was 8/9/2022 by 8/30/22 they had opened the skull, taken out the liquid filled cyst and re-sectioned the underlying tumor. Which they determined was prostate cancer.
PC doesn't often go to the brain. If it does, it has usually already spread to other parts of the body. In my case, it had metastasized from wherever it was in the body, avoiding PET / CT scan detection, and gone directly to the brain. They were all scratching their heads over that and also had no idea why it created a liquid filled cyst the size of a mango. ( I saw the video of cutting into it and liquid spilling out all over. )
They added Xtandi (enzalutamide) to the ADT regimen, as the lupron shots weren't stopping the cancer (keeping the PSA to 0). It crosses the blood-brain barrier, which the other ADT drugs do not. So far the f/u MRI's show no evidence of recurrence. The next one is Sat and I just had the blood draw for the PSA. So that's where I am.
Considering what I've read of other guys' experience with ADT, I'm very lucky. Until the Xtandi, I managed a solo sex-life, a little weight gain and tiredness. The Xtandi OTH has obliterated all thought of sex, I have to make an appointment with myself just to think of having a wank, which still kind of works. I have lost all body hair and my pecs are looking like boobs and I tire easily. But nothing else.
That's the story--I've been living full out until the last year--skiing, hiking, backpacking, travel--with all this going on in the background. I'm 81yo and though I'm not ready to go, I am wondering what life will be going forward. I moved to Albuquerque NM from Seattle in 2020. This last year I have gotten very weak and not sure if I can ever get back to at least some skiing and gentle hikes. The mountains and music/opera have always fed me. There is a surprising amount of great music here and in Sana Fe.
Wondering if anyone has had experience with Xtandi and recovering from almost total weakness. Thanks.
bill
Was my Surgery necessary or should I have been told to do watchful survilance?
Biopsy pathology report - what to make out of it
