High PSA, Three Negative Biopsies. Now what?

Posted by tom123x @tom123x, Aug 20 6:13pm

Hi!

I'm 58, healthy and active.

From July 2016 to today my PSA has gone from 6 to 14. Can't remember my 4K score from 2020, but it was high enough that he ordered an MRI — which was clean — but urologist wasn't freaked out. MRI was followed up with a negative biopsy. PSA kept rising so I had another MRI in Feb 2022. Everything normal except this from path report:

"Mostly encapsulated 13mm T2 hypointensenodule in the left paramedian anterior transitional zone at themid gland demonstrates
associated diffusion restriction. PI-RADS 3 – Indeterminate."

Urologist said to test PSA again in a few months. It went up again so he ordered a fusion MRI biopsy (no fun at all!), which was also negative.

He wants to keep monitoring PSA. He said he has a few patients that just run high.

I like him well enough, but I was disappointed/annoyed that no one shared the biopsy results with me before my follow-up appointment two plus weeks later, especially since they were negative. Also, I was looking at my records in the patient portal and one of the visits has his notes from a different patient. It's a big, busy practice. I get it. But after my first biopsy with an older uro, he called me the day he got the report.

Do I get another opinion? Another doctor? I'm in Phoenix and we have Mayo, which seems to do a lot of cutting edge stuff. Would appreciate any advice. Thanks!

Interested in more discussions like this? Go to the Prostate Cancer group.

Hello @tom123x and welcome to Mayo Clinic Connect. A couple of things you've shared about different patient notes and lack of follow up seem to point to some increasing distrust and uncertainty around the care you may be receiving. It would for me too.

I think at this point, I would seek a second opinion at a different hospital to bring some clarity to the situation and allow you to pursue the best possible care you can get. If that happens to include your interest in a second opinion at Mayo Clinic in Jacksonville, you may use this link to get started: http://mayocl.in/1mtmR63

Do you have family and/or friends that feel you are at the point of needing to consider a second opinion as well?

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It sounds to me like you need a second opinion for peace of mind, if nothing else!
I have no experience with Mayo Scottsdale, but we have loved our experience in Rochester so I would think it would be similarly top notch. I encourage you to give them a call!
They will review your imaging and your pathology, and determine next steps from that.

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@amandajro

Hello @tom123x and welcome to Mayo Clinic Connect. A couple of things you've shared about different patient notes and lack of follow up seem to point to some increasing distrust and uncertainty around the care you may be receiving. It would for me too.

I think at this point, I would seek a second opinion at a different hospital to bring some clarity to the situation and allow you to pursue the best possible care you can get. If that happens to include your interest in a second opinion at Mayo Clinic in Jacksonville, you may use this link to get started: http://mayocl.in/1mtmR63

Do you have family and/or friends that feel you are at the point of needing to consider a second opinion as well?

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Thanks for the reply. "Do you have family and/or friends that feel you are at the point of needing to consider a second opinion as well?"

Really it's just me and Dr. Google getting spun up. My uro has a lot of experience and didn't hedge at all when he gave us (wife and I) the results. I'm probably overthinking it.

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@leebeth

It sounds to me like you need a second opinion for peace of mind, if nothing else!
I have no experience with Mayo Scottsdale, but we have loved our experience in Rochester so I would think it would be similarly top notch. I encourage you to give them a call!
They will review your imaging and your pathology, and determine next steps from that.

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Thanks for the reply! Good advice.

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@tom123x

Thanks for the reply. "Do you have family and/or friends that feel you are at the point of needing to consider a second opinion as well?"

Really it's just me and Dr. Google getting spun up. My uro has a lot of experience and didn't hedge at all when he gave us (wife and I) the results. I'm probably overthinking it.

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@tom123x Your came to Mayo Clinic Connect for a reason and to express your doubts. I'm with @amandajro on this and given what you wrote in your original post your doubts are there for a good reason. Are you overthinking this? Maybe. The PSA test is not 100% reliable and in fact my husband (a pathologist) reminds me frequently that no lab test is 100%. Your doctor has followed through on biopsy and imaging and these are normal (Good news!). If you were my brother I'd suggest you get another opinion. Since you are right there in Phoenix I agree with @leebeth that sending your tests and imaging to Mayo Clinic is a good option. What do you think about this?

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@naturegirl5

@tom123x Your came to Mayo Clinic Connect for a reason and to express your doubts. I'm with @amandajro on this and given what you wrote in your original post your doubts are there for a good reason. Are you overthinking this? Maybe. The PSA test is not 100% reliable and in fact my husband (a pathologist) reminds me frequently that no lab test is 100%. Your doctor has followed through on biopsy and imaging and these are normal (Good news!). If you were my brother I'd suggest you get another opinion. Since you are right there in Phoenix I agree with @leebeth that sending your tests and imaging to Mayo Clinic is a good option. What do you think about this?

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I agree. Serendipity!

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@naturegirl5

@tom123x Your came to Mayo Clinic Connect for a reason and to express your doubts. I'm with @amandajro on this and given what you wrote in your original post your doubts are there for a good reason. Are you overthinking this? Maybe. The PSA test is not 100% reliable and in fact my husband (a pathologist) reminds me frequently that no lab test is 100%. Your doctor has followed through on biopsy and imaging and these are normal (Good news!). If you were my brother I'd suggest you get another opinion. Since you are right there in Phoenix I agree with @leebeth that sending your tests and imaging to Mayo Clinic is a good option. What do you think about this?

Jump to this post

Thanks for the reply. I think you're right.

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Why not get a PSMA PET scan? My understanding is that MRI can miss up to 30% of cancer. The PET scan is extremely sensitive and can image your whole body for cancer.

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Tom, I had high PSA's for many years, with several rounds of biopsies, 4k test, prostate MRI, etc. No cancer every found. I had very large prostate (120 grams or ccs.) so likely responsible. Of course, does not mean no cancer as biopsies are at 12 small points and cancer could be elsewhere in prostate. But probably means no aggressive cancer. However, please make sure you are emptying your bladder fully. Although I have never been diagnosed with cancer, my urologist was not paying attention to my repeated reporting of problems urinating and never advised me this can lead to big problems. I got sick last July and went into acute renal failure. Turns out my bladder was completely full and backing up into my kidneys. I had a special surgery to take care of the urinating problem, which it did, but now have chronic kidney disease, from which there is no going back, apparently. I still have a high PSA and recently had a fusion MRI and no cancer found. But a simple test, a bladder scan, can tell if you are emptying your bladder. My urologist never did this. So make sure you stay on top of this possible problem if you have a large prostate and have problems urinating.

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