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Hi. I am in a similar situation but a few steps ahead of you. My husband had a prostatectomy in June. Gleason 9 going in with several aggressive features and pathology confirmed the aggressiveness including spread into lymph nodes. PSA check at six weeks post-op at 1.9 and continued to rise. Active lymph nodes verified by new PSMA, He was placed on hormone therapy and PSA has been falling ever since. The next step will probably be chemo in the New Year as the lymph node situation is fairly extensive and radiation may cause too many unfortunate side effects. Have you signed up on a patient portal where your records can be seen? We are receiving care through UCLA and we can see all test results, scans, etc. as soon as they are available. This saves a lot of waiting and worrying about the unknown. You need to be pro active about your care. We have excellent doctors but they are busy with many responsibilities. The support staff at UCLA has been super helpful and prompt in their responses, use them as that is what they are there for. One last thing…my husband also isn’t much interested in the details of any of it either. I know for him it’s a self-protection thing. Wishing you both all the best going forward.

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Replies to "Hi. I am in a similar situation but a few steps ahead of you. My husband..."

@ucla2025, hi and thank you for taking the time to respond to my post and questions.

Had your husband had a PSMA scan before as well or just this last one?

We just got the results of his scan and it whiplashed us. It noted no nodule involvement nor bone or other activity only to be told today (by surgeon that did RP surgery) that th scan is only 40% accurate. Of course the actual RP pathology would be the most accurate. That did indeed verify that 2/9 nodes were shotty, SVI and bladder neck involvement. Ugh. A blow to our hope we had thought we were getting. We are of course still optimistic that the scan didn’t detect any cancer in his bones or other organs.

I sat on the phone much of yesterday persisting he be seen by the doctor that performed his surgery. They were able to get him in today. That made us both feel better about starting a rapport with an actual doctor and not just the nurse practitioner.

His next PSA test will be on 12/9. That will determine the next steps to take.

Thank you again so much for taking the time to share your experience and advice.

Kindly,

SR