I greatly appreciate everything you all have been through and how you share your experiences and IMO have kept families together longer, given hope and improved quality of life.
Our doctor is very good and very busy. I would appreciate your eyes on my husbands history and any thoughts you may have. I'm a little concerned he should be on systemic treatment after seeing his CTC count of 30.
5/17 Bioposy has 3 cores 4+3, 2 3+3, and 1 4+4. PSA 10. No symptoms
6/17 RP performed. We were told cancer was contained and all margins clear
9/17 3 months later (not 6 weeks) PSA is 1.2, PSA advances very rapidly all the way to 8 in just 6 weeks. Bone scan is negative as is a CT scan. A 1.2 cm tumor in lymph nodes is not seen. PSA continues to climb to 8 while we are in a state of confusion what is wrong. Local urologist says go to Mayo now.
10/17 Mayo does Choline PET and lights up 1.2 cm tumor. They suggest lymph node removal. 30% chance of cure.
10/17 Hopkins says surgery not viable and wants to do chemo. Oncologist sees 1.2 cm tumor on the CAT now.
12/17 PSA starts a slow increase. Put on Lupron. Plan is to be on lupron for 4 months then radiate prostate bed.
6/1/18 Radiation complete. No side effects. Lupron continued. PSA undetectable.
6/19 Lupron leaves system. Doctors want to see if radiation worked. My husband is not on any medications.
7/19 PSA rises immediately. .66.
7/31/19 PSA doubles in 3 weeks... now 1.35
8/1/19 Choline 11 PET finds a "Blazing, hot" lesion on T6 and very small update in right femur.
8/13/19 Radiation to T6 and femur. PSA is .65 10 days after radiation.
9/19/19 PET scheduled for 11/19. PSA results at 6 weeks will be back today. Lu177 in Homburg standing by. Our doctor thought my husbands lesion was HUGE to only have a PSA of 1.67. He stated once we killed the T6 lesion, maybe he would be cured.... but the nasty CTC test says CTC count of 1 positive and 29 mutated CTC's=30.
CTC test 8/13/19 and he had 1 Cytokeratin + CTC and 29 negative Cytokeratin. Total of 30 CTC's with no somatic Genes detected. My understanding is new technology sees the negative CTC's which used to not show up with metastatic cancer when cancer mutates (EMT). I'm wondering is my husbands CTC is higher because his CTC test through Biocept and OncoCEE technology is higher than previous tests which may have only seen 1 CTC?
I've read other posts from where you would begin systemic treatment.
Thank you for any thoughts. Information is power.