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2nd opinion cost?

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Posted 2/24/2022 1:36 AM (GMT 0)
I have read many posts stating to get a second opinion on previous results. Most say to have slides sent to John Hopkins. Having had a TURP and Biopsy while GL was 6 then 7, then second Biopsy showed GL 8. I did not get surgery, just RA and ADT. I have a checkup with the URO next week, should I ask about this? I live in Arizona, would John Hopkins still be my choice if I needed a second opinion, or is surgery required first? Finally, is there a cost to sending the slides away?
On a side note, still having minimal SEs on Orgovyx. Just started waking up around 2 am and it is difficult to get back to sleep. No need to urinate when waking. No problem with ED, but getting the gut to go away, even with lots of weights and cardio is not happening. I have a great diet and have lost a few pounds. Just wondering if this is retained water? I was always fairly thin. The only good SE from the gut is the instant TV tray it provides. LOL. Sorry for all the questions. My best to all,
Jack
Posted 2/24/2022 2:15 AM (GMT 0)
Jack - The cost is below.

https://pathology.jhu.edu/patient-care/second-opinions/send

In your case, slides from your biopsy or any other pathology could be sent. The key is finding who has them and getting them the link information. They might charge to send them on you behalf but that did not happen to me.

No, you don’t need to have surgery. Prostate pathology is much more accurate after surgery than biopsy sampling but it can always help when making decisions.

I suspect your urologist will tell you that you have had treatment so any new results would not change much at this point. He might tell you to ask your RO.

Can’t help with the other question.
Posted 2/24/2022 12:42 PM (GMT 0)
John Epstein at Johns Hopkins is the gold standard at reading Prostate slides. Another is Bostwick Labs in Virginia. Anyone in the world can use them so an Arizona resident is not an issue. This should be done as part of the diagnosis.

Since you had biopsies that were progressively worse and then treated, I would see little value in another read now. Had you done it when the first read showed low risk one of the true experts would either have confirmed or found some higher risk PCa and you could have started treatment earlier.
Posted 2/24/2022 2:33 PM (GMT 0)
Thanks Mumbo and JNF for clarifying the John Hopkin’s question. I always wondered what my true results were after hearing about sending slides for a second opinion. Wish I would have known about this forum after my first biopsy. My Uro said no big deal yet with a GL 7. He based that on my low PSA. I was advised to watch and wait. My best wishes to all,
Jack
Posted 2/24/2022 3:06 PM (GMT 0)

Jack64 said...
Wish I would have known about this forum after my first biopsy. My Uro said no big deal yet with a GL 7. He based that on my low PSA. I was advised to watch and wait.

Jack, I don't know if your Uro was giving good advice or not, but the longer you're here, you'll see guys come in with near-astonishing stories of what a Uro advised them to do, or not to do. However, sprinkled in with that are some great stories of up-to-date Uros who are really on the ball.

Have good and chilly Tucson day.
Posted 2/24/2022 6:35 PM (GMT 0)
I just wanted to chime in that, for some men, their prostate cancer does not express much PSA so a low PSA score is not always a good predictor of the extent of disease. For those men, tracking PSA change is especially important.

If I’m reading your signature correctly, your PSA seemed to bounce around. Makes it even trickier to know what was happening.
Posted 2/24/2022 7:54 PM (GMT 0)
I don't think that getting a second read would add meaningful info since you have already undergone therapy (radiation + ADT).
Or, to say it another way, if there was some higher Gleason cancer somewhere in your prostate, your therapy has hopefully killed it by now.
Posted 2/24/2022 10:10 PM (GMT 0)
Sr Sailor, thanks for the reply. I will follow your lead and just keep watching PSAs while I am on ADT. I missed the opportunity back in 2018 to get a second opinion when the GL-7 result happened after my first biopsy.
Melanie, I can understand your confusion. I looked at my signature and noticed I had my Gleason scores mixed up. After the TURP my Gleason score was 6, 3+3. My Biopsy in 2018 showed GL-7, 3+4. My Uro said no big deal because my PSA was low. It stayed low but slowly climbed until 2021. At that time my Uro left. My new Uro said I should have had another biopsy. His biopsy was a GL-8, 4+4. He said that even with a low PSA, I should have had a biopsy sooner with a GL-7. I have updated my signature for future posts with the correct results and dates.
Matt, another beautiful day in Tucson, loved the rain yesterday. Thanks all,
Jack

Post Edited (Jack64) : 2/24/2022 3:18:04 PM (GMT-7)

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