My husband had a consultation with Dr. Earl Burgess in NC and he wants my husband to get a "bone scan and CT with contrast" and we're coordinating that with our local urology office. My husband got his 9th Firmagon shot yesterday and we will get PSA and testosterone results today. The urology office has scheduled the scans, but I am confused as to why a bone scan would be ordered instead of a PET scan if what I read is correct and bone scans are notoriously unreliable and often result in false negatives.
It's so hard as a caregiver/partner who is in the role of primary researcher because I feel like the providers take questions from wives as annoyances and I'm guessing they prefer it on the extremely rare occasion that I am not able to accompany my husband to his appointment (I've only missed one).
So now these scans are ordered and I want to make sure he's not subjecting himself to radiation for a scan that is inferior.
Also, his PSA last month was 0.01. So what will show up on a scan at this point? The urologist office has told us previously scans like Auximin were not advised when on ADT because he is likely to get false negatives or even false positives, but Dr. Burgess said mets will show even while on ADT.
My husband depends on me to help him gather information and try to help him with treatment decisions and questions. We have gotten different recommendations from different providers so we try to stay informed about options so we know what questions to ask and what to expect.
I'm confused and frustrated and welcome any input on the scan question and also on how to best ask questions of providers.
The Axumin is accurate at PSA of about 2.... The bone scan is poor at detecting lytic bone lesions... the Gallium PSMA scan is being done in clinical trials at PSA of .5 or higher... I find that Oncologists take little input from patients....likely you will get CT scan ....The fact that his PSA was .01--considered undetectable --- is great news...good luck...
Hi, thanks for your reply. My understanding of scan sensitivity tracks with what you're saying here, that's why I'm so confused because Dr. Burgess has indeed ordered a "bone scan" and a "CT scan with contrast" and I was sitting right there when he said the words.
By the way, my husband just called to tell me and the urology office called to tell him his most recent PSA is <0.014 and his testosterone is 9. So he is getting a wonderful response to Firmagon, thank heaven.
Maybe all the MCP, IP6, BIRM, etc is helping too. Who knows, but we're thrilled....one more month with an "undetectable" PSA. Praise the lord.