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How could they get my diagnosis so wrong.

Prostate Cancer | Last Active: Sep 20, 2023 | Replies (26)

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@edmond1971

Lots to cover here and thank you for sharing your situation and I'm sure you will get lots of help.

Baseline information - It would be helpful to learn more about your age, overall health, comorbidities, PSA history, specific results from PSMA PET scan. These factors and findings play a significant role in understanding the guidance provided by your health team and also the individual decision making that you had to figure out.

ADT treatment - 8 months of ADT is a long enough stretch of time that you should have seen measurable results in terms of lowering PSA, hopefully to < 0.1, and building on that information it would help to have a better sense of the decision for RALP and the extent of the cancer at that moment in time.

RALP surgery - The best results from a surgery is pathology that confirms the cancer is isolated to the organ, the risks are surely present in terms of incontinence and impotence. The path forward for bringing normalcy to these quality of life factors can range from a few weeks to a few years, it really varies and does depend on your health going into the surgery. For the incontinence, definitely go the direction of Kegel exercise and with time you will have better control of your bladder. For the impotence, it would be helpful to get a sense from the surgeon if the nerves were spared, but even if they were, it can take time for things to wake up. Also realize that an orgasm happens in your brain, so while it might not be 'the way it used to be', you can still find that pleasure.

Most of all, be easy on yourself. Prostate Cancer is a challenge and every patient is different and life isn't made of perfect decisions. I think you are in a good spot to (1) confirm the cancer is gone and stick with a healthy diet to prevent biochemical recurrence and get annual PSA tests, (2) work on bladder control muscles and be patient, (3) be patient with the sex drive and just be lucky you aren't on ADT anymore, for those of us on ADT, the drive itself is gone, less so the function.

Keep the Faith

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Replies to "Lots to cover here and thank you for sharing your situation and I'm sure you will..."

I'm 73, perfect health otherwise, very athletic before all this. Was on HRT for 12 years. PSA was undetectable for 10 months before surgery. Had DNA testing done, all 77 cancer markers were negative. No family history of PC. PSMA said regional metastatic PC. The latest MRI and CT scan 7 months before surgery showed that everything was normal size and the CT scan stipulated that everything was grossly unremarkable,( couldn't find any evidence of cancer)