← Return to Rapid Reoccurance and Short Doubling Time after RARP

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@aldenrobert

Hello Steve, I also had a persistent PSA after having my prostate removed in March of 2021 (PSA was 11.6 prior to surgery) Gleason scores 4+4=8. My first PSA test post surgery was 0.37 on 05/15/21, then 07/15/2021 PSA was 0.56, then on 09/09/2021 PSA was 0.69. On 09/27/2021 I started 34 rounds of salvage radiation without ADT. After that 12/10/2021 PSA 1.29. Yes PSA almost doubled during radiation treatment...
Then I had my first PET/CT scan and nothing was found. I then switched medical providers and got myself an Urological Oncologist. The next 10 months I was on active surveillance watching my PSA climb with every PSA test. A 12/16/2022 PET/CT scan found a metastasis in a lymph node in my chest. I then saw a second Urological Oncologist that was able to get me into a 6 month clinical trial, the MetaCure Trial. That consisted on two daily drugs Orgovyx and Erleada along with radiation to the affected lymph node. My PSA was up to 12.12 before starting the trial and at < 0.01 PSA at the end of the trial and I was taken off all drugs. But that did not last long within three months (12/11/23) PSA was showing 0.02, then three months later (3/11/24) PSA was 1.02, 6/10/24 PSA 6.67, and on 7/22/24 PSA was up to 10.58. On 08/02/2024 I started Orgovyx along with Xtandi (both daily oral drugs). My PSA dropped back down to undetectable < 0.01 in 12 weeks.
All of this was over the course of about 3 1/2 years I have had at least 5 PSMA PET/CT scans and only one found the single metastasis in my chest. So I guess to answer your question YES, I have had rapid doubling times. I have an aggressive form of Prostate cancer much like you. That means that we need to get some aggressive treatments as well. We need to be our own advocates for the best care/treatments available. Forums like this are a great way to learn about what treatments are available and what questions we should be asking out Medical team. Over my three plus years journey I have changed Medical groups three times to find the best care for myself.
I wish you the very best with your care and treatments. Please feel free to contact me directly if you have any questions that I might be able to help with. You are not alone.

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Replies to "Hello Steve, I also had a persistent PSA after having my prostate removed in March of..."

It’s too bad you didn’t find yourself a Genito urinary oncologist. After salvage radiation, they would Almost definitely have put you on ADT Because of the Gleason eight. That would’ve prevented your cancer from growing as it did for years

A urinary oncologist is only good for surgery and minor treatment after that, They do not specialize in prostate cancer specifically. People need that GU oncologist, who knows about all the steps you need to treat prostate cancer that is aggressive