Pursue 2nd opinion?

Posted by happydappy @happydappy, 3 days ago

First a bit of context. Father had PCa at age 58 with radical prostatectomy. I'm 63, had urinary issues for several years, had a PSA of 4, MRI showed a 1.7 cm lesion graded PI-RADS 4, transrectal fusion found one core of 3+3(6) for GG1 and a couple other suspect cores. But the core from the lesion was clear. The doctor, from Duke - a center of excellence, said it's not unusual to find a lesion that size without malignancy. But he said he'd check with radiologist to ensure he got the needle into the lesion. He recommended active surveillance and to get another MRI and PSA in six months. When I followed up to ask about the biopsy accuracy, he didn't answer but rather said that the radiologist downgraded the lesion to a PI-RADS 4 "minus" and then said to have more tests in one year. A couple of questions...

1. Has anyone heard of PI-RADS 4 "minus" as I can't find anything about sub levels in this grading system? I'm a bit concerned about a 1.7 cm lesion as that seems rather large.
2. Is active surveillance typically six months or a year follow up because my doctor gave conflicting information?
3. Should I get a second opinion?

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Not heard of pi-rads minus, sounds like the doctor is trying to say that this is not as aggressive because it’s not the Full size of pi-rads 4.

On Active surveillance, you would normally get at least six month PSA tests. Could be he means you don’t need an MRI for another year. Or a PSMA pet unless the PSA goes up a lot showing there’s a change.

I am wondering why you have not had a PSMA pet test. Are you on ADT (I doubt it) so is your PSA is too low to really do a test, Or it’s because the doctor doesn’t feel your lesions are cancer, so there’s no reason to do the test yet. .

Definitely get a second opinion.

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@jeffmarc

Not heard of pi-rads minus, sounds like the doctor is trying to say that this is not as aggressive because it’s not the Full size of pi-rads 4.

On Active surveillance, you would normally get at least six month PSA tests. Could be he means you don’t need an MRI for another year. Or a PSMA pet unless the PSA goes up a lot showing there’s a change.

I am wondering why you have not had a PSMA pet test. Are you on ADT (I doubt it) so is your PSA is too low to really do a test, Or it’s because the doctor doesn’t feel your lesions are cancer, so there’s no reason to do the test yet. .

Definitely get a second opinion.

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Thanks for the response. The lesion was over the size minimum for PI-RADS 4 but I know there are other factors involved in radiology grading. The urologist originally called for both a PSA test and MRI at six months post biopsy (they got scheduled at 7.5 months which is next week). He never mentioned a PMSA pet scan. I'm definitely calling Monday to get a second opinion as the conflicting information has me wondering. The other close hospital, UNC, is also a center of excellence.

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@happydappy if it were me, I would ask my doctor to order the decipher test and pass on a biopsy sample to complete that test. The decipher test will give you a feel for aggressiveness and modes of treatment in an easy to read report. The decipher test also can change a doctor‘s mind as to what your treatment should be.

I would definitely get a second opinion from a center of excellence via Telehealth as you can just send them your documentation.

I had a Gleason score of 3+4 and opinions from five radiation oncologists who were either at a center of excellence or trained at a center of excellence. Only one of them suggested active surveillance as a possibility. I did not like the idea of active surveillance because I felt every body reacts differently over time and no doctor can guarantee a growth rate one way or another, of cancer. On top of that, even if you test in six months or a year, and decide to have treatment, you can add on another 2 to 4 months after that to get that treatment. In all of that time, you potentially risk having that cancer grow outside of your prostate creating more Treatment and side effect problems. For me, I did not want to take that risk.

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@happydappy
@bens1 gave you good advise.

The Decipher test is an excellent test on aggressiveness of cancer. Your pesent Gleason score does not indicate it though. But for me the lesion found would be troublesome and I would get second opinion.

The PSMA is a test to see if cancer has spread to other areas. But if I read your post right you have not been diagnosed with cancer.

The PSA test would be in my opinion done more frequently under active surveilance to see if rising numbers continue. Your prostate with lesions and cores in it is not a happy camper.

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I am on as for over one year . A PSA test every 3 months . I had a year-over-year MRI comparison -- it showed no change . Next I had a Bone & CT Scan booth clear . Yes a PSMA-PET Scan may !! be next .
My advice to all new potential members -- NEVER TRUST YOUR 1ST BIOPSY Gleason Score . Get a 2nd and 3rd opinion .

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Well, I definitely forgot to mention you should get a PSE test. That will tell you whether or not you have a cancerous lesion. If it says no, then you go on active surveillance.

You can get a decipher test, but that PSE test will tell you whether it’s worth doing.. If there’s no cancer, there’s no reason for a decipher test. Again, if you can get both without a problem, do it

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I had a PHI test but haven't heard of the PSE test. Sounds new and wondering if insurance covers it?

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@clandeboye1

I am on as for over one year . A PSA test every 3 months . I had a year-over-year MRI comparison -- it showed no change . Next I had a Bone & CT Scan booth clear . Yes a PSMA-PET Scan may !! be next .
My advice to all new potential members -- NEVER TRUST YOUR 1ST BIOPSY Gleason Score . Get a 2nd and 3rd opinion .

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What were your test results that had you getting a PSA every 3 months?

Why shouldn't a first biopsy be trusted?

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@jc76

@happydappy
@bens1 gave you good advise.

The Decipher test is an excellent test on aggressiveness of cancer. Your pesent Gleason score does not indicate it though. But for me the lesion found would be troublesome and I would get second opinion.

The PSMA is a test to see if cancer has spread to other areas. But if I read your post right you have not been diagnosed with cancer.

The PSA test would be in my opinion done more frequently under active surveilance to see if rising numbers continue. Your prostate with lesions and cores in it is not a happy camper.

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I was diagnosed with prostate cancer, just a Gleason grade 1 that most recommend active surveillance.

Are Decipher tests and PMSA pet scans covered by insurance? Are there certain cases where these are recommended and/or covered by insurance?

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@happydappy

I was diagnosed with prostate cancer, just a Gleason grade 1 that most recommend active surveillance.

Are Decipher tests and PMSA pet scans covered by insurance? Are there certain cases where these are recommended and/or covered by insurance?

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PSE test is FDA approved and covered by Medicare

PSMA PET scans are always covered unless they want to give You are a hard time.

Decipher has been covered by Medicare and other insurance companies

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