Posted 2/28/2018 7:09 PM (GMT 0)
Most journeys have a beginning, a middle part and an end...I'm writing this down while I still can remember the details with some degree of accuracy...At age 55, my health insurance family plan (I was self employed), always expensive, doubled in price, making it unaffordable for my wife and I to maintain. That was 20 years ago....I had a complete physical as a precaution before I canceled the insurance, everything was fine but my doctor voiced some concern over my PSA number which was 3.5, something like that..The DRE was fine....So over the next 9 years I did get the occasional PSA test, usually at a free screening or health fair...The number went up very slowly, not enough to trigger any concern. Then, at age 64.5, at another free prostate cancer screening the Uro listed my DRE as "abnormal" and the PSA came back 6.8..He said I should "see my doctor" about further investigation..I had spent a lot of time investigating what form of Medicare to choose, so many choices, finally I chose one recommended by my family doctor, a Medicare Advantage Plan run by United Health care and accepted by my family doctor..The day my membership card arrived I made an appointment to see him, he referred me to a Urology clinic where they quickly scheduled me for a biopsy. It came back negative ! I was off the hook ! But the urologist cautioned me, something is going on, we need to watch it. I also had a mild case of BPE so he put me on Finasteride which, as expected, lowered my PSA by half, down to 4.5 or so. A year went by, PSA started moving up a little, another biopsy, again no cancer but there was some high-grade PIN..Nine more months pass, more concern, the Uro wanted a third biopsy, I resisted but finally agreed, this time he really was aggressive with the wand and the results came back positive in 4 cores, two were G-6, one G-7 and one G-9...This was nine years ago, going on ten....Back then, in Denver, I had 2 choices, surgery or radiation..One of the partners at the Urology clinic was a top notch surgeon with a good reputation who actually taught other urologists how to perform the surgery using the then fairly new da Vinci surgical robot . He tried to talk me out of having surgery, saying that G-9 cases like mine could only expect a 50-50 chance of a cure. At that time radiation offered about the same odds.. I chose surgery anyway, 50% being better than nothing and I always could fall back on radiation if necessary...The actual surgery went well, although it resulted in a nasty staph infection that put me back in the hospital for a week, then a month of IV antibiotics at home..First post surgery PSA came back 0.9 Ouch ! Nine months passed while I healed/ recovered from the surgery while I searched for the best R.O. I could find. I found one who was the director of radiology at a big local hospital that had just installed the latest Varian LINAC Rapid Arc I did 40 fractions SRT + ADT He wanted 2 years ADT but after 18 months of undetectable PSA checks he relented and my active treatment ended. Two more years went by with undetectable PSA tests, things were looking good.....Then the monster came back....Back on ADT, Lupron only, PSA went undetectable again for almost 2 years. When PSA again was detected, Casodex was added, and PSA again dropped to undetectable..A single bone met was found in a neck vertebra, my R.O. gave it 5 shots of SBRT and it disappeared..PSA back to undetectable (all PSA's using the standard assay). about a year later, PSA returned and Zytiga replaced the Casodex. At this point I was no longer seeing any urologists, relying on a young, aggressive M.O. instead. I had a nice remission with the Zytiga, almost two years undetectable or at least less than 1.0.. Late last year the Zytiga stopped working, switched to Xtandi, got a fair but short-lived response. PSA moving up rapidly now..It was 54 two weeks ago...
Two years ago, I was seen by a VA oncologist. I needed to do this in order to have the VA supply the Zytiga and Xtandi which even with Part D Medicare I could not afford those co-pays and doughnut holes..I got to like and trust the VA doctor. Both my Medicare oncologist and my VA oncologist agree chemo (Docetaxel) is my next step. Since Quality of Life takes a huge step backwards with this, I have been resisting implementing it, hoping one of the new immunotherapy treatments became available. Yes, I know about Provenge but it's not available through the VA and my Medicare doctor has little faith in it, especially considering its cost. It's very hard to walk into the Chemo Lounge when you have no symptoms and let them push a bag of poison into your veins knowing it will make you sick as hell..
So that's pretty much my journey so far..I just thought I would share it with everyone..I have learned so much from the guys who are on the same journey, thank you all....
Fairwind...