Posted 6/14/2020 7:02 AM (GMT -6)
This may be a little long.
I left this forum last fall primarily because I felt I was being trolled. For those who may be new, here's a brief description. 2013 I had an RP at MD Anderson (MDA). My PSA became detectable (0.3) in 2016. I live in Illinois which had just became a medical marijuana (MM) state, so I thought what the heck. Low and behold, my PSA went back to undetectable, and stayed there for nearly 2 years. I do not like the THC component of MM, so I quit the THC and just stayed with the CBD, My PSA slowly became detectable in 2018. I thought well it's going slow, I don't like being the dumb ass THC makes me, so I just stayed with the CBD only, until the first of October of 2019, when I stopped the CBD also, just to see what happens. The first of November my PSA jumped from 0.4 to a whopping 3.3 in 4 months. ***? Well needless to say, I went back to using THC, within 3 months my PSA went back 0.7????? Still not good.
At this point is when some people here really started in on me, about I needed to have salvage radiation, I needed to take hormone, they were making fun of my choice to use MM, however there were many folks here that were very curious, as well as supportive. MDA ask me about a year in the MM treatment what I was doing?. I told them, it was like the twilight zone. They didn't want to acknowledge that I even mentioned it. When the PSA came back, they told to go to a local Dr and get on hormone, in other words, we're done with you.
My local doctor sent me to see a urologist at Barnes in St Louis. He's a guy about my age, and he suggested I have a FABC PET scan, the PSMA scan wasn't available here yet. I don't know if I was more concerned about the results, or the actually tracer that was going to be injected in to my veins. I already knew I wasn't going to have salvage radiation, and probably not going to take hormones. So why have it?
I started doing more research, about the new scans, and discussed it with my children. They said, perhaps I could go ahead and get the scan, just to see how bad the cancer may be. I had the scan in early February. It showed I had metastasis in one lymph node. My Dr at Barnes said he could remove the affected mode, but before I decide, I should go listen to the radiation oncologist. I saw a young Dr wearing $500 shoes and a $200 hair style. He was going to blast the lymph node with high power radiation, salvage radiation to the prostate bed, and put me in a clinical trial for some new and improved hormone therapy. I did not like that man one bit, for all I know, he might have done a fellowship at MDA??? No, I wasn't going down that path.
I have a surgeon friend, we're motorcycle buddies. I don't talk Doctor shop with him, we just talk motorcycle shop. He knew I was battling the prostate cancer, and ask me to keep him informed. I told him about the scan, and the proposed treatments. He ask where the lymph node was, he told me that it was in a difficult location, and it would not be a basic "lymph node dissection", they'll have to go deep.
"Lymph node dissection", started me on a different search. "Post RP lymph node dissection", which lead me to "salvage lymph node dissection" SLND. I know many of you realize that research leads us down many rabbit holes, and this lead me down a dark one. SLND is new, not a lot of statical data, but the data I found indicated that I may be a good candidate for this treatment. I went back to the urologist. He told me that they would go get it, just like they got my prostate. My RP, was no cake walk.
I decided to proceed. I was scheduled for 3/30, then came the effing virus, it was postponed to 4/16, then postponed indefinitely. Then one day they called, and ask if I could be there next Tuesday. I had the surgery on 5/5. The pathology came back with only the one affected lymph node, the 8mm tumor was contained within the node.
Now, the stressful wait to check my PSA. OH man??? Last Monday, my PSA is back to undetectable. From the research I've done, there's a better chance than not, that my PSA will return, but I feel as though, I have had a reset.
Yes, to all of you nay sayers, and doom predictors, I will continue with the MM. Barnes urologist knows it, and they are fine with it. Unfortunately, Illinois has recreational marijuana now, and needless to say, the MM users are being cast to the curb, where they have only givin us a special parking space, and the last visit they no longer have the low strength CBD to THC (15:1) oil. I guess I'll have to make a trip to Colorado to stock up on the good stuff. Looking for a place to stay in Teluride.