Thanks for the reply Jeff. Getting older has been most difficult as I become either wiser or more judgmental; not understanding how and why I’m so unfamiliar with the in’s and outs of this cancer.
When I was told to report to the oncology clinic and showed up, one of the nurses met with me to explain why I was transferred to the clinic from regular urology appointments. She went on: “ you’re here because we want to know why your PSA has been going up AFTER A Prostatectomy. “ She reminds me of the history: 6 months ago your PSA was 60, then a few months ago it rose to 100, then a couple of months after that it hit 112” I interrupted her to first say: “ I still have my prostate” She immediately replied: “ No you don’t. It says right here in your records that you prostate is missing “ ( strange choice of words, it would have made more sense to me is she gave me a date that it was removed ) She dives back into the records perhaps looking for that information. But she misinterpreted, I later found out; words to the effect that my “ pelvic floor was empty “ or something akin to that which were the words of someone in the process who read the so called definitive test which I’ve seen it mentioned here; which involves a PET and CAT SCAN done at the same time. I had that test conducted twice 3 months apart.
The first time it was ordered by my Urologist, who called me the minute he got the results, which was before I returned home after the test ( about 90 minutes after the test. I really like my urologist who was sincerely concerned that I hadn’t done anything since the cancer dx and warmed me that with a PSA OF 100 I very likely had the cancer Metastasize into my bones or other likely places that this cancer goes if not treated in some approved way ( hormone therapy and or radiation ) My doctor excitedly said I’m calling you about the results of you test which presents both positive news and a mystery. “ The cancer has not spread but that it hasn’t spread with a PSA of 100 for many months now ‘WHY HASN'T IT SPREAD’ is the mystery” I think you should consider hormone therapy at the minimum and we’ll redo the test in a couple of months.
I agreed to his suggestion already after discussing the results of the test with the assigned oncologist in the oncology clinic. BTW I really like him as well mostly because he was a great listener and he was aware of my fear of Lupron based on watching my Dad after he started Lupron injections. He suggested starting with a one month dose. In fact he ordered it while I was still talking with him; he called up to the Urology clinic to administer the one month dose. Turned out that the pharmacy didn’t have one month doses but it took over an hour to tell me I had to return for the shot once it was in house. Turns out that the message to notify me when it arrived fell thru the cracks of VA HEALTH CARE. It took well over a month before I was notified that it had arrived but there wasn’t an appointment open with my doc for three months and I had to make numerous calls for the VA to realize that the doc didn’t need to administer the shot. It was close to three months before I drove the 150 miles to get the shot which a nurse administered to the fatty part of my arm. By then my PSA reached 112.
They scheduled a retest of the PET/CAT scan which I was told by the same oncologist who approved the one month dose. He said your retest is almost the same as your first test so I recommend starting radiation. I asked about the type of radiation that seems to target the cancer only.
Meanwhile someone in the chain of command saw things differently and said that it was now in my bones.
Almost 4 months have passed and I have mostly been told erroneous info; like I have no prostate.
Meanwhile after 3 one month doses of Lupron, my PSA went from 112 to 15 seemingly Delighting everyone who has seen the 97 point drop. But I was also told by the doc who said I can rest assured that “ this cancer will be the death of you “ that I am not a Candidate for radiation! That makes no sense to me since the first oncologist wanted to target the cancer in the prostate.
This brings me back to the furst news of cancer " the size of a dime " in my Prostate.
i dont know who to believe. I've been to two very well respected cancer, hospitals, and the VA each one has a different take on what I should do making me even more confused.
Sorry for the Length of this post.
I'd like to hear what the people here in the Mayo Clinic connect form have to say maybe I can get some better advice than what I've been getting from the so-called professionals
Thanks again for replying!