For those who have followed me the last several years, I wanted to give you an update on me. And for those that have been diagnosed with oligometastatic PCa, I wanted to share with you my journey and current results...hope it is helpful!
The short version is that I was diagnosed with stage 4 PCa in 2015 at age 53, with 1 met in my T-8 vertebra (extreme pain). PSA was 227, Gleason 4+4=8. Radiated the vertebra and started hormone therapy immediately. 6 rounds of early chemo in the summer and fall of 2015. PSA was undetectable in 12-weeks and stayed that way for over a year.
My PSA started rising slowly in late 2016, so I decided to seek a second opinion at MD Anderson (my local doctor was totally supportive of this).
I realized on my first visit that the care is really dramatically different than what I was getting locally, even thought we love our local MO. I was glad I had this new relationship at MD Anderson. They worked as a team with my local MO - treatment plan set by MD Anderson, locally I had labs done, shots administered. Scans performed at MD Anderson. To start with, we agreed to add Zytiga if PSA approached 2.0
They added Zytiga + dexamethasone in December of 2017, when PSA reached 1.8. PSA immediately went back to undetectable, where it remains today.
My MO at MD Anderson decided to really be aggressive because I showed no sign of PCa outside the prostate. So, after a PET scan, Prostate MRI (with a coil - ouch!), and circulating tumor cell tests all coming back negative, I had my prostate removed in the summer of 2017. Clean margins. Continued hormone therapy, including Zytiga until today. (Also had a pacemaker installed a few months ago - the radiation apparently caused some issues with my heart rate not going above 108 bpm. Highly recommend Cleveland Clinic for heart issues.)
That brings me to today. Just left my doctor’s office and I am officially starting my ADT holiday today! The plan is to measure my PSA and testosterone every 8-weeks and see how I do. The hope is a durable (long term) remission or a cure.
So grateful my oncologist has kept Fighting this with me, treating me as an individual and not just following the standard of care. I’m convinced that had we not removed my prostate, my cancer would have continued to advance.
There is hope with this new approach! And I have learned the importance of being your own health advocate! And I have learned so much from everyone on this site...
I remember when I first found it, I had virtually no idea what everyone was talking about - particularly all the abbreviations! But everyone was so helpful- when I really needed advice, I would 1:1 message members and they would genuinely make the effort to help me make the right decisions ... or at least help me know the questions I should ask my doctor.
I will keep everyone posted periodically on how my “vacation” goes! I do hope this post helps others that have a similar situation! Keep up the fight!
Best wishes,
James