Post Treatment Monitoring
Hello All,
I am looking for others who may be in my shoes to gauge how their cancer is being monitored post treatment.
I am 52 year male who was diagnosed with stage 4 metastatic prostate cancer in July 2023. I started ADT in September (apalutamide and zolodex), had brachytherapy in November of 2023 and followed with 23 EBR sessions in January 2024. Following my EBR, I was advised that they would now monitor my PSA every 6 months going forward.
During my diagnosis I had a negative CT of head, bone and body. It was a PSMA Pet Scan that detected the cancer in the seminal vesicles, 2 lymph nodes and a small tissue mass outside the prostate in the pelvic region.
When I asked about having a follow up PSMA pet scan (8 months after EBR due to the body removing residual cells), I was denied by the medical association in Ontario as not valid for funding.
With apalutamide and zolodex being PSA suppressors (my psa on diagnosis was 87. after 2 months of ADT and prior to brachy and EBR it had dropped to 1.4), I dont feel that montoring solely by PSA is the best option for myself. I have been advised I can head to the US to have a PSMA pet done if I would like but that they will not do here in Ontario.
I am just wondering what others in my case are doing for post treatment monitoring? I am feeling like I am stuck in a grey area of waiting now and watching a number that I don't feel is really that valid.
No validation of treatment success is my concern.
Thanks for any input in advance.
I underwent a prostatectomy in 2013 for a Gleason 9. My after care team did Post Op PSA testing every 3 months. After 2 years my Post PSA moved from 0.02 to 0.04 and onward until I reached 1.34 at which time I underwent 40 EBRT combined with a 6-month Lupron shot. All went well until 2023 when my Post op PSA rose from 0.2 to 0.34. I underwent a PMSA PET scan and a small growth was found on my hip bone and treated with 5 stereotactic radiation treatments - so far all is well 0.02. Candidly the PMSA PET was a lifesaver. I hope that info helps. Dennis(prostate cancer.net TEAM) Thank you Dennis for your information. The problem I am having is how do they validate the effectiveness of the treatment? After brachytherapy and EBR we will now just watch PSA and not repeat any imaging to see changes. Apalutamide has been shown to be a PSA suppressor, and in my case, had drastically reduced my PSA number prior to my subsequent treatment. My treatment was based on my PSMA Pet findings (as my PSA had diminished due to ADT), but now monitoring my disease state is back to PSA which had shown in the past to not be an accurate predictor in my case. I have been thinking this is related to the "free" healthcare system in Ontario/Canada, and was curious if others have PSMA Pet as part of disease state monitoring post treatment
- A friend and PCa survivor in Phoenix Arizona told me that during his treatment he met many many men from Canada who flew in for treatment/monitoring at the nearby Mayo Clinic.
It was a routine ultra-sensitive post-op PSA test that caught my post-op rise early on. I am not familiar with the Canadian system --- so I can not offer much help or insight on that topic. Do keep us posted. Dennis(ProstateCancer.net TEAM)
I'm 59 years old and my experience and is similar to yours, except I got chemo instead of surgery and radiation. Maintenance treatment after chemo is Orgovix and Xtandi. My PSA went from around 41 down to 0.119. Both forms of Testosterone are below lab detection limits.
For monitoring, I get a weekly blood draw for a standard blood panel. I get a test for PSA, Testosterone and a lot of other things every 4 or 5 weeks right before I visit my Oncologist. Like you, my insurance will not pay for another PMSA PET scan since my PSA continues to trend lower. I get bone scans and CT scans every so often and they are negative. But like you, I want another PMSA PET. Without it, I sort of live in limbo, not knowing if my cancer is completely gone or not.
I understand that it actually doesn't matter. Even if the PMSA PET scan shows no cancer, it can still return. So my maintenance treatment will stay the same. And if my cancer starts growing again, it will most likely be first detected by a rise in PSA and not a scan. But I sure would like to know.
