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.
Thank you
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SuppWife
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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.
I agree with you that no scan is needed right now. His PSA is virtually undetectable and he is responding great to Firmagon. It's true that large, older bone mets may rarely show up on a bone scan/CT in spite of the low PSA (especially if he had very high PSA originally) - but, as you say, what is the point of doing it now?
Thank you for your perspective. Is a CT scan with contrast likely to show metastases in lymph nodes or soft tissues with his PSA as low as it is? My husband had a lot of EPE and positive margins on one side and Dr Burgess thinks there may be some tumor/cancer left in the prostate bed because of his very high post RP PSA. We feel fortunate he’s responded so well to Firmagon. Dr Burgess said the scans would help him decide about adding Zytiga and/or taxotere. I wish scans had been done prior to starting Firmagon, but here we are.
CT scans only show if lymph nodes are enlarged. They don't reveal metastases. LNs may be enlarged due to disease or cancer. They arbitrarily set a cut-off of 1.2 cm for "enlarged" but it is certainly possible that they contain cancer even if they are not enlarged. For newly diagnosed, metastatic (on bone scan/CT) PC, Taxotere seems to work especially well if there are multiple metastases with some outside of the pelvic area. He clearly does NOT fall into that category. Zytiga does work well independent of the number of metastases. Although your your husband is not newly diagnosed, there is every reason to believe that the same logic applies. Those studies were based on bone scans/CTs, not PET scans. Here's my article on the various scans:
If you can, write down your concerns and let your husband present them to his doctors. Or just have him tell the doctors he wants your questions addressed. My Research Doctor no longer ignores my wife's questions.
That’s good advice. I try not to be pushy and to let them know we don’t think we know better. I just want to be engaged and informed. Thank you for your reply.
The scans your doctor has ordered are the first step, most insurance company’s won’t pay for the Axumin scan first. The scans with contrast is how they found my monster. Trust your doctor or get a second opinion. Good luck with the monster 🙏🙏🙏🙏🙏
Thank you for your reply. Your story is wild. My husband’s GP let him go several years with a rising PSA and questionable DRE without giving him any sense of urgency about the possibility of prostate cancer. Acute urinary retention and a huge cancer filled prostate took us to the ER last year and here we are. Thanks again and my best to you too!
"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)."
These doctors think they're Gods. You sound like a smart and reasonable lady so my advice is "screw what the doctor's think". It's your husband life and you are more than entitled to act as his spoke person cause men generally do not speak up. I think your husband is very lucky to have you as a wife and a caregiver (make him take you for a nice romantic dinner and make sure he pays).
So here's one for you:
A guy dies and is on the way to entering heaven when he sees a very long line of men in front of a gate that says "henpecked husbands enter here". He looks around and sees this one man all alone standing in from of a different gate. He approaches that man and asks "why he's standing in front of this gate all alone?" The man replies "cause my wife told me to stand here".
Thank you for this. That’s pretty much where we land. This is his life so if the doctors are annoyed at us trying to do the best we can for him then we have the wrong doctors. We have been married 37 years and he’s my soul mate, the love of my life, and I’ll do whatever I need to do to make sure he’s getting the best care he can get.
The joke is hilarious 😁
I always appreciate your humor. 👍
I have had over two dozen nuclear bone scans with corresponding soft tissue CT scans since 2003. All but one in the first 7 years. The last in 2016.
..." I want to make sure he's not subjecting himself to radiation for a scan that is inferior...."
There is little need to be very concerned about radiation if you are considering a Nuclear Medicine Bone Scan that uses Technetium-99m. The Tc-99m decays rapidly with a half life of only 6 hours, is largely excreted from the body, and in any event, changes into Tc-99, which is so insignificantly radioactive that the tiny residual trickle of its radiation creates a half life of over 200,000 years. The general environment and parts of the human body have as much or more "background" radiation every day of our lives.
Comparisons can be made to natural radiation loads in the normal bones of the human body and in certain foods containing potassium-40 (i.e. K-40). There is even such a thing as a "Banana Equivalent Dose" that has been kicked around the physics/medical world as an illustrative example:
This is so interesting! It certainly eases my mind on any potential risk from the exams themselves. Less reason to worry is definitely welcome. Thank you very much!
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