The Active Surveillor, what a gift! To arm attendee with knowledge this newsletter exists is to engage a literate audience at typical medical center sponsored support groups in challenging "party line."
Thank you Dr. Metzger, micro-ultrasound and PSMA PET is "shared decision making" for even the guy in early stage AS, for opinions cannot detect hidden cancer and yet to hear of rebate if medical industry wrong. Thank you to each for comments below, beneficial to all neophytes to this cancer.
Thanks for sharing your experience. DH has had 2 transrectal biopsies (14 cores each), first 3+3, second 3+4 in 2 cores, < 15%. Stable PSA, not higher than 5 (72 yo).On AS for 10 years. My question is with the MRI reading. Like you, DH was told PIRADS 5 and lesions in lymph nodes (later CT scan showed nodes fine). Urologist thinks cancer in indolent and a non-starter, but it is worrisome regardless to see the PIRADS 5. Do you think your similar reading is only the result of an inexperienced pathologist?
In regard to the case of DH, I cannot say if the radiologist at Ohio State University that read the MRI had a lack of experience, but since there was disagreement among the physicians at OSU that could very well be the issue. DH may want to consider a second opinion of the MRI as I did, or having a micro ultrasound, or a PSMA PET scan.
Hi Richard, thank you for sharing your PSMA Pet Scan experience. I'm in a similar position and am hoping you could share the name of the doctor for your second opinion? Also, my Decipher score was 50, which is the low end of intermediate risk. Was your genomic test Decipher? Thanks in advance.
The name of the radiologist for the second opinion on my MRI is Antonio Westphlen at the University of Washington. I can give you his contact information if you want, or Howard has it. He does not charge a fee but requests a donation be made to his Department, which I did. Good guy to work with. My Genomic Test was Oncotype DX, which my urologist seemed to favor.
For Richard it sounds like this test was necessary since there was debate about whether his cancer had gotten out of the prostate or not. Glad to hear it worked for him.
I wonder if this test should also be used for any patient who has been biopsied and the pathology report shows evidence of perineurial invasion (PNI). PNI is touted as being a path for cancer to spread outside the prostate along nerves.
I know PSMA PET is covered by Medicare. If you are not yet on Medicare, my doctor said the out of pocket cost would be around $10K. I just checked all my pockets. I only found $22.18. Guess I'll have to wait a few more years to get to 65!
Dr. Scholz and the staff at Ohio State University indicated that some insurance companies are starting to pay for this type of scan as they see it as a means to prevent more serious out of pocket expense for them down the line. You may want to inquire of your insurer. If your physician believes that he can make a case to use this scan for PNI then insurance may pay for it.
Thanks, Steven. More to come soon. Howard
The Active Surveillor, what a gift! To arm attendee with knowledge this newsletter exists is to engage a literate audience at typical medical center sponsored support groups in challenging "party line."
Thank you Dr. Metzger, micro-ultrasound and PSMA PET is "shared decision making" for even the guy in early stage AS, for opinions cannot detect hidden cancer and yet to hear of rebate if medical industry wrong. Thank you to each for comments below, beneficial to all neophytes to this cancer.
Thanks for sharing your experience. DH has had 2 transrectal biopsies (14 cores each), first 3+3, second 3+4 in 2 cores, < 15%. Stable PSA, not higher than 5 (72 yo).On AS for 10 years. My question is with the MRI reading. Like you, DH was told PIRADS 5 and lesions in lymph nodes (later CT scan showed nodes fine). Urologist thinks cancer in indolent and a non-starter, but it is worrisome regardless to see the PIRADS 5. Do you think your similar reading is only the result of an inexperienced pathologist?
Debbie:
In regard to the case of DH, I cannot say if the radiologist at Ohio State University that read the MRI had a lack of experience, but since there was disagreement among the physicians at OSU that could very well be the issue. DH may want to consider a second opinion of the MRI as I did, or having a micro ultrasound, or a PSMA PET scan.
the main point of this article for me is shared decision making, a concept missing from so many prostate cancer patients
Hi Richard, thank you for sharing your PSMA Pet Scan experience. I'm in a similar position and am hoping you could share the name of the doctor for your second opinion? Also, my Decipher score was 50, which is the low end of intermediate risk. Was your genomic test Decipher? Thanks in advance.
Hi Anthony
The name of the radiologist for the second opinion on my MRI is Antonio Westphlen at the University of Washington. I can give you his contact information if you want, or Howard has it. He does not charge a fee but requests a donation be made to his Department, which I did. Good guy to work with. My Genomic Test was Oncotype DX, which my urologist seemed to favor.
For Richard it sounds like this test was necessary since there was debate about whether his cancer had gotten out of the prostate or not. Glad to hear it worked for him.
I wonder if this test should also be used for any patient who has been biopsied and the pathology report shows evidence of perineurial invasion (PNI). PNI is touted as being a path for cancer to spread outside the prostate along nerves.
I know PSMA PET is covered by Medicare. If you are not yet on Medicare, my doctor said the out of pocket cost would be around $10K. I just checked all my pockets. I only found $22.18. Guess I'll have to wait a few more years to get to 65!
Hi Jeff:
Dr. Scholz and the staff at Ohio State University indicated that some insurance companies are starting to pay for this type of scan as they see it as a means to prevent more serious out of pocket expense for them down the line. You may want to inquire of your insurer. If your physician believes that he can make a case to use this scan for PNI then insurance may pay for it.
Richard,
Good thought...thank you!