I am 77 and retired. I spent 50 years in Computers, programming for 25 years and the last 25 running a consulting business with almost 100 businesses.
In 2010 I was 62 and a biopsy showed Gleason 3+4. Had surgery, after surgery they told me it was a 4+3. It was only stage two. 3.5 Years later it came back and I had radiation. 2 1/2 years later it came back and I went on Lupron. I became castrate resistant 2.5 years later and added biclautamide. 1 year later went on Zytiga, which kept my PSA down for 2 1/2 years., After some AFIB Issues I switched over to Nubeqa, The last 20 months I’ve been undetectable. I became stage four about six years ago, had a metastasis on my spine zapped. I did not find out I was BRCA2 Until four years ago.
I spent the last four years attending weekly online, advanced prostate cancer meetings with ancan.org. They have people In those meetings that have spent 15 years helping people with how to manage treatment for advanced prostate cancer. Over that time I’ve heard from hundreds of people about what is going on with their treatment and recommendations about the best path forward. A real education. Besides that I’ve been attending biweekly prostate cancer meetings with CSC, Monthly meetings with UCSF and bimonthly meetings with the reluctant brotherhood. I’ve been on Mayo for a little over a year, Posting and learning new things all the time.
I am constantly reading studies and articles about different treatments.
I know that my cancer is going to come back. It’s just a matter of when. Eventually Nubeqa Will fail or the BRCA2 Will cause too many genetic problems. I’m always searching for answers to where I go next, And that leads me constantly to where other people go next.
Jeff are all of those organizations something anyone can join or do you have to be at a certain stage of cancer? Also even though your first recurrence was not that long ago, it was a long time in prostate cancer development. What happened when you recurred? Were you on q3 PSA? What do you think would be different or you would do differently if you were at that point again today?