THERE WAS NO RESPONSE TO AN UPDATE REMINDER IN 2020 SO THERE IS NO UPDATE.
Diagnosed with Gleason 10 cancer (one core of 12 positive) in 2015. Opted for surgery at MD Anderson in Houston, TX, due to the aggressive nature of the cancer. Post op the Gleason score was reduced to 9 (4+5). Received an excellent pathology report after surgery, cancer was contained in the capsule. No additional treatment beyond surgery was necessary, based on the pathology.
Six month PSA was "undetectable". One year PSA still "undetectable". Eighteen month PSA remained "undetectable". That was all the great news. In July of this year, my two year PSA check came back at 0.1. MD Anderson wants me back in 4 months for another PSA check. Due to the aggressive Gleason 9 cancer, I of course am a bit panicked by the 0.1 reading. We recently relocated to California. Had a different lab pull a PSA out here last week and it was 0.12. Obviously more nervous now, as that is an escalation in one month.
OK...I know it was from a different lab, and obviously it was a more sensitive test. Here is the question for the very experienced group that follows this website. Is it time for panic, or do I stay calm until my next PSA at the end of Novemeber in Texas? As most of you will no doubt know - staying calm and not worrying is a bit of a challenge with this dreaded disease. Any input form the forum would be appreciated. [Although it is difficult to refrain from worrying, a few more data points would give a much better indication of what is happening. Changing from one lab to another can certainly introduce a level of variability that can give a false indication of progression of the disease. For some labs, 0.1 is the smallest value that can be measured.] Either way, I will post updates as I progress - as others - especially those with high Gleason scores, may find the information useful.
Sorry for the delay in re-posting. Am still working and have been very busy. As this disease progresses, and soon will have a greater impact on me, I will update on a more regular basis. Since my last posting my PSA is up to 0.49. May not sound like much, but since my recurrence, my "doubling time" is 6 months, and my Gleason Score is 9. From everything I know to date - that is not a good combination. That said, I am still not on any treatment yet. Am waiting for either an Axumin or PSMA PET Scan to determine where the Cancer is now. Am told that if it is only in one or two spots - we could try radiation to lower the upward PSA trend, and put off Lupron for another year or two. I could write a long story about how Aetna Insurance has fought paying for the scan. For now, I will pay for it ($11K), and am having that done on 12/26. To this point, from my diagnosis and prostate surgery in 2015 I have never had any symptoms related to my cancer. I suspect my luck is going to run out soon. Would love to hear if there are any good stories or new ideas on the prognosis for Gleason 9 with short doubling time. While I have read several stories to date, with a similar condition - most to all of them end with the persons death. I am not aware of any new treatments, other than hormone therapy to slow the disease. Hope to be around long enough to provide hope to others.
Baron's e-mail address is: bfigel AT scsfence.com (replace "AT" with "@")
NOTE: Baron has not updated his story for more than 15 months, so you may not receive any response from him.
