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I have a question to those of us using Lupron

Prostate Cancer | Last Active: Jul 15, 2022 | Replies (46)

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@drj

Post-Lupron testosterone values are not given for 2018 and 2019, and finally given for 2021, and testosterone is now normal. Presumably they were undetectable, and PSA is very low. I'm only three months into Lupron post radiation and monitoring both.

Is is fair to say, given the dramatic therapy you are receiving, that in retrospect, the diagnostic process suggesting prostate-confined disease leading to surgery remains difficult? My tests suggest confined disease, but I don't know if they know the probability of confined disease.

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Replies to "Post-Lupron testosterone values are not given for 2018 and 2019, and finally given for 2021, and..."

When I was diagnosed in January 2014, other than PSA and the biopsy, the only imaging available was the MRI and CT which frankly, unless you had high volume disease, would probably not show any lymph node, bone or organ involvement.

Fast forward and today the C11 Choline, PSMA and Aximun scans can detect disease at very low levels.

The challenge is and remains (in my opinion...) twofold:

If the FDA has not authorized the use of those scans for diagnostic purposes in men who are "de novo" then insurance companies are not likely to approve and pay for them.

There are urologists, radiologists and oncologists who tread lightly when it comes to anything other than the standard of care as outlined in NCCN guidelines. I still remember my radiologist's words when I pointed to emerging studies which showed adding short term ADT and including the pelvic lymph nodes to SRT improved outcomes...her answer, we don't have long term data on that...when SET failed, I vowed never again to allow my medical team to deter me from what I wanted to do when I felt the data supports it.

There are clinical trials ongoing looking at using the newer scans in the diagnostic phase of de novo patients. As one night expect, early data points to locating what conventional imaging does not, thus changing the diagnosis and treatment plan.

My testosterone was not very high when Mayo measured it in January 2017, just under 300. Throughout the 18 months of Lupron it was <7. My last Lupron shot was May 17 so by August or September it would have cleared my system. T was 135 in October , 400+ by February 2020 and over a year later was about the same.

The short answer, yes, accurate diagnosis and staging of de novo men is a challenge, it could be easier with the dances in imaging technology and soon genetic testing.