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Knowing ASAP if with recurrence - Your Thoughts, Please!

Posted by Rose @rosewg, Jan 9 11:44am

My husband had planned radiation (HDR Brachy or SBRT) for 3+4=7. But since we have learned of cribriform and now a Decipher "high risk" score, we now have more concern of possible recurrence. IF with a recurrence, would want to begin re-treatment ASAP. We know PSA doesn't hit nadir for some time, and so doesn't really define whether all cancer is gone. After surgery PSA is hopefully "undetectable" by 3 months and so easier to interpret surgery's "success." So the dilemma: Whether to continue with radiation plan or to choose robotic prostatectomy. QUESTION: Your thoughts; "what would you do"? Thanks for any responses!

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Rose | @rosewg | Jan 18 11:05pm
In reply to @tom86 "Hi Rose, Well, we have been there for sure. You have mentioned several things regarding Jim's..." + (show)
@tom86

Hi Rose,
Well, we have been there for sure. You have mentioned several things regarding Jim's condition. Are you being treated at a Center of Excellence? Forgive me if you have already said, I am late to this conversation.
I, too, was frantic at the diagnosis and for 3 years we followed Tom's PSA as it appeared stable. Suddenly, it rocketed. Then we knew.
Tom has had the Decipher, multiple pathology post surgery opinions (Mayo, Hopkisn, UCSF) and everthing else we could find to sort through this journey. You have not reached that point, however, once again, if you have any questions (although no one knows for sure) I can tell you what our situation was/is and how we are pursuing any and all avenues for cure
Keep the faith, Dee

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Jim’s doctoring at Mayo Rochester. I’m actually retired from working on Mayo 18th floor in the Endocrinology department. So Mayo is our home clinic/health care. We live just outside of Winona, MN, about a 45 drive from Mayo. You mention great health care institutions. Mayo (Rochester?), John’s Hopkins (where Jim got a second opinion on his biopsy, showing a cribriform morphology) and had a Decipher test with a 0.8 high risk score. His Gleason was 3+4. The cribriform and Decipher make it more worrisome but his surgeon believes he has a good chance of a “cure.” It is disconcerting to know how many have recurrences, though. We initially thought HDR brachytherapy would be a good treatment. But when the decipher score came back high, we decided on surgery, knowing that the entire prostate could then be biopsied.

Sorry that Tom had a recurrence. So I imagine he’s on some sort of treatment again? I really hope all goes well for you two!

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Tom | @tom86 | Jan 18 11:21pm
In reply to @rosewg "Jim’s doctoring at Mayo Rochester. I’m actually retired from working on Mayo 18th floor in the..." + (show)
@rosewg

Jim’s doctoring at Mayo Rochester. I’m actually retired from working on Mayo 18th floor in the Endocrinology department. So Mayo is our home clinic/health care. We live just outside of Winona, MN, about a 45 drive from Mayo. You mention great health care institutions. Mayo (Rochester?), John’s Hopkins (where Jim got a second opinion on his biopsy, showing a cribriform morphology) and had a Decipher test with a 0.8 high risk score. His Gleason was 3+4. The cribriform and Decipher make it more worrisome but his surgeon believes he has a good chance of a “cure.” It is disconcerting to know how many have recurrences, though. We initially thought HDR brachytherapy would be a good treatment. But when the decipher score came back high, we decided on surgery, knowing that the entire prostate could then be biopsied.

Sorry that Tom had a recurrence. So I imagine he’s on some sort of treatment again? I really hope all goes well for you two!

Jump to this post

Hi Rose,
No.....the good news is that Tom has had no reocurrance. It has been 3 plus years post surgery with an undetectable USPSA, We are thankful. We feel Tom had the best care available. He had a high rish Decipher Score and had several indicators for High Risk BCR. That is why we are thankful for his treatment and surgical outcomes. I feel confident surgery was the right choice.
Dee

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