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G’day Thomas, sorry to read of your problems. Here are my answers to the questions you raise
Where is the cancer? It is often extremely difficult to establish the sites of metastasised disease until the sites are very large and obvious to the scans currently available. So essentially, no one knows is the answer. Incidentally, you might find it of some use to read in my E-Letter#9 some views about the terminology used to describe cancer that has escaped the gland.
…. it appears we're treating the psa instead of the underlying cause, how do i know if cancer is reacting to the hormone treatment if we don't know where it is. In theory the ADT (Androgen Deprivation Therapy) you refer to as hormone treatment should deal with any prostate cancer cells wherever they are in the body.
PSA tests have been used as a proxy test to measure the success or failure of treatment. The test was originally developed to measure the success of surgery because it was thought then that PSA was generated solely by the prostate gland (hence Prostate Specific Antigen) and therefore if you removed the gland there would be no measurable PS, unless the disease had escaped the gland. The test was subsequently expanded for use in diagnosis and for measuring the success or failure of all treatments despite the fact that it is NOT prostate cancer specific. So if the ADT is working, then, in theory, PSA numbers should come down.
BUT…. The newest drugs for treating advanced metastasised disease came with a warning that PSA tests had no value in establishing if the treatment was working or not Dr Snuffy Myers recently posted a video aimed at reducing some of the confusion about PSA – see PSA Confusion? thread below for the link to the video. Like Jack, I am not sure that he has lessened the confusion, but he has raised a number of questions in my mind. As he says the only way you can truly measure whether the new drugs are working is by scans that show significant changes in identified lesions and metastatic sites. Since you have no positive scans, that measure is not much good for you and you may have to depend on PSA or keep scanning until you find evidence of metastases. For what it is worth my two oncologists here feel that scans are not worth doing in most cases until PSA levels are well over 400!!
would a pet scan be helpful? Maybe: maybe not. There have been some extravagant claims made for PET scans – my oncologist would not support my having one. But it might be worthwhile considering this option. Be sure to gain an understanding of which of the multiple PET scans that are available you choose because it appears that some of them may produce better results than others. I’m no expert on that complex subject however.
Finally, have you considered a PAP test – see this short write up to start you on your investigations: The prostatic acid phosphatase or PAP test . As you will see : “The one place where, sometimes, the PAP test can still be valuable is in patients with an elevated PSA but no sign of bone metastases.” That seems to fit your situation.
Your reference to the PAP test troubled me. I was thinking, not only do we men undergoing treatment experience hot flashes and enlarged breasts as part of our feminization, now we have to undergo the indignity of a PAP test, the same one that women take to screen for cervical cancer. Turns out the test women take is the other PAP test, created by a Greek doctor with a long last name with the first three letters being Pap.
Brushing aside that silliness, I hope the previous poster, Thomas Wolf, overcomes his present situation.
