December 2023 marked the sixth anniversary of my prostate biopsy showing a Gleason grade 7 (4+3) prostate cancer. April 2024 will be the sixth anniversary of my radical prostatectomy, which showed prostate adenocarcinoma Stage pT3b N1, Gleason score 4+3=7 with tertiary pattern 5, involving 70% of the entire gland and multiple positive surgical margins with two of nine lymph nodes positive for tumor.
Genomic testing
Genomic testing on the tumor tissue from surgery showed a Decipher score of 0.81, which put me in the "High Risk" category, suggesting the cancer would exhibit an increased risk for metastases. Even though surgical pathology showed the tumor had already metastasized locally, my Decipher score suggested an aggressive tumor.
Additional genomic testing of the tumor tissue from surgery showed it was missing a tumor suppressor gene called phosphatase and tensin homolog (PTEN). PTEN inactivation is associated with adverse outcomes, including increased tumor grade and stage, earlier biochemical recurrence after radical prostatectomy, metastasis, and prostate-cancer-specific death.
PET scan results
Despite a current PSA of 135, genetic markers suggestive of an aggressive tumor, and my inability to tolerate the primary treatment for advanced prostate cancer, my most recent PSMA PET scan (Pylarify) on January 23. 2024 shows no evidence of malignancy.
Some will say this is a false-negative PET scan because the tumor cells no longer express PSMA. I didn't want to do another PSMA PET scan, especially since I already had a negative PSMA PET scan last May. But amazingly, I have two PET scans in a row, eight months apart, showing no malignancy.
I had told Mike and my sister that it would be normal. When I met with my radiation oncologist for the current PET scan results, I didn't tell him, "I told you so." We had a very cordial conversation and agreed to do another PET scan in nine months. In the interim, I'll continue PSA testing about every three months.
I have another prediction - my next PSA will drop.
Positive aspects
Let's look at the positive aspects of this situation. There is no anemia to suggest bone marrow infiltration. My liver enzymes are normal, so in combination with the CT scan, there is no evidence of liver metastases, much less any other visceral metastases.
The current high-resolution CT scan also shows no masses or enlarged lymph nodes. My alkaline phosphatase (ALP) enzyme, a marker for bone metastases, is normal, with no evidence of bone lesions on CT scan to suggest bone metastases.
According to the Prostate Cancer Foundation, "Bones are the most common site of prostate cancer metastasis, occurring in 85%–90% of patients with metastatic prostate cancer."
My doctors are perplexed that my course has been so atypical. I have no objective evidence of metastases after being diagnosed six years ago and a PSA of 135. I am an enigma, and happily so.
What do I attribute this atypical course to? I attribute it to a good radiation oncologist with two rounds of radiation under my belt, a positive outlook, intensive self-care, and the belief I will be cured.
My intensive self-care involves so many things that it will be a future newsletter. The most important thing is that I know I will be cured. You can call this magical thinking or whatever cynical thing you want, but I know the power of the mind, and that belief is not negotiable.
I am a miracle.
Until the next newsletter, stay healthy.
Much love,
Keith
Makes me thing about Alan Turing, who (of course) broke the enigma code used by the Nazis. Thank you for the update.
Intensive self-care, epically interesting/fascinating. Magical Thinking sounds vital in the healing journey. I’m in the wondering about self-fulfilling prophecy phase of my survivorship journey. I enjoy your work, very helpful. Thank you.