Im living this now

Gleason 9, PSA 40 July 2022

On degarelix/Lupron for a year. Also secondarily on immunotherapy prescribed for a concurrent small bowel cancer. Immunotherapy absolutely destroyed/cured bowel tumor and oncos erroneously thought it had done the same for prostate cancer.

Based on this erroneous belief, we ceased all treatment and I spent about eight months under the blissful fantasy that I have been cured of two cancers. Well, the prostate cancer came roaring back like a hurricane maybe someday I’ll post about the emotional impact of this whipsaw. Hint: it wasn’t small.

So I went back on ADT in July 2024 and just went off at on June 23 of this year

In between I had a prostate ectomy, but my surgeon did nothing with my lymph nodes that had lit up on a PSMAPET scan. Biopsy of nearby lymph nodes was clean as where my margins.

So anyway, my point is that I believe I have two cancerous lymph nodes that have never been treated yet. I just went off ADT and like clockwork. My PSA is on the rise. I asked my surgeon and my oncologist over and over about the failure to address the lymph nodes, and I never understand the answer

So already I’m confirmed for a recurrence and right now. I have absolutely no treatments going on for it. We’ll do another blood test on August 20. Not only for PSA, but for diabetes because God has a really twisted sense of humor

Beginning to worry that I’m castrate resistant and I guess I just can’t jump back on ADT like you jump on an off subway.

But if my case is illustrated in any way, your concerns are warranted. On the other hand, there are other guys who go off ADT and seem to be OK for months, but I don’t know anybody whose lymph nodes were ignored during surgery. Who had that outcome

In the bullpen, I still have radiation and immunotherapy. As much as I hate ADT and my man boobs, I’m channeling Joni Mitchell when I say you don’t know what you got till it’s gone. I view the fatigue man boobs, and tears as a small price to pay for the two or five extra years at ADT could buy me.