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Rising PSA after prostate cancer surgery - needing encouragement and advice...

I am 52 years old, diagnosed last February with PSA of 49. I had a Bone scan and CT clear, MRI showed seminal vessel invasion, Gleason score 4+3, surgery in May. Locally extensive, no nodes were involved, PSA undetectable at three months and eight months.

Rising PSA with possible mets
I went back, May of this year, and my PSA jumped to 1.34 - verified two weeks later at 1.8. I scheduled a PET scan, but my insurance denied it. Scheduled CT and bone scan, bone scan showed questionable area on L2 vertebra but not definite. Scheduled another PET, again denied by insurance, and I must wait 45 days from the last request before they can make another request for PET. If I do the PET, I would have to pay out of pocket; the doctor wants to request an MRI to rule out or confirm met possibly. Again that will take time.

What are my treatment options?
What should I do? And what would be possible treatment options? The only treatment I have had, to this point, has been surgery. I need words of encouragement and advice from others who have the experience, please. No would of, should of, could of please. Prayers are greatly appreciated. Anyone willing to talk, I would appreciate that also.

Thank you,
Douglas

  1. Hi dtsmith68. Sorry you are having these insurance issues with getting tests for a potential prostate cancer recurrence. First, I want to ask if your doctor has tried to appeal the denials under medical necessity. I also want to ask if your doctor has mentioned either Axumin or the PSMA test for seeking out recurrent cancer. This article gives an overview of Axumin: https://prostatecancer.net/clinical/axumin-early-detection/ and this one for the PSMA test: https://prostatecancer.net/clinical/psma-imaging-scan/. I, of course, have no idea that these would be any more likely to be approved, but potentially their increased accuracy would assist in making the case for medical necessity. Plus, if you are going to try to find out what is happening, you may want the most advanced testing possible. Really hoping you can get some answers soon. Please feel free to keep us posted, if you like, on how you are doing. Best, Richard (ProstateCancer.net Team)

    1. Update: Its a long story but I did get Axium pet scan that came back negative, and mri of spine also negative, started Fermigon, will start radiation in 2 weeks, Any words of incouragment and advice is greatly appreciated.

    2. Good to hear that all your scans were clear. I hope the news continues to be positive for you. I too had a Gleason of 4+3 and stage 3, my PSA was only 4.6 but I have a family history. I had 5 1/2 weeks of radiation, which I had no problems with. I had Brachytherapy which kicked my butt. My first PSA post surgery was 0.02. Six months later (3 weeks ago) it was 0.18. I’m worried but my doctor isn’t. I’m gonna try to wait 6 months for the next PSA but it’s tough! I sincerely hope the radiation is the answer for you. I’m sure the clear scans have given you some peace of mind and that helps. Good luck on your journey, keep us posted.

  2. Hi dtsmith68. It is great news that the Axium PET and and MRI came back negative. As noted in this article, "Degarelix is the most extensively studied and widely available GnRH antagonist worldwide:" https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3547532/. In addition, it has to been shown to be more effective than other gonadotrophin-releasing hormone (GnRH) antagonists. Hoping this information proves helpful. Again, the negative scans are a big positive and now you have a plan moving forward. Know that this community is here for you. Best, Richard (ProstateCancer.net Team)

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