How could they get my diagnosis so wrong.

How? I the risk of sounding glib, people are involved and we make mistakes once in a while.

Being SO FAR off, my guess would be mixing up the reports somehow.

What testing led to the misdiagnosis?

I had 2 MRI's, 3 CT scans, 1 Bone scan, 1 PSMA scan and Gleason score 8.
1 MRI and 1 PSMA scan were in agreement on Metastasis. The bone scan was negative, the rest were inconclusive. There wasn't enough tumor after surgery to do another Biopsy.

Wow, what a ride you've had - I'm so sorry. Where were you misdiagnosed/treated?

Rather not say but it was a Major Cancer Only, in Florida.

Don't blame you for not wanting to say. But really would like to know where such a mistake would happen.

Just something we should not have mistakes made. Did you have Decipher test?

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

ADT leads to the death of prostate cancer cells. "Androgen withdrawal triggers the programmed cell death pathway in both normal prostate glandular epithelia and androgen-dependent prostate cancer cells."... from: https://pubmed.ncbi.nlm.nih.gov/8602401/#:~:text=Within%20the%20prostate%2C%20androgens%20are,androgen%2Ddependent%20prostate%20cancer%20cells.

So 8 months of ADT could/should eliminate active cancer cells thruout the body.

Question: what was the Gleason score of the tumor removed at surgery? The same as before ADT? If so, I'd say the surgery was needed to finish the job the ADT started.

There wasn't enough tissue to do another Gleason score. The tumor was < 5% of volume.

The pathology report said that there was no metastasis , cancer never left the prostate.

I asked for one, the rule is if you have ADT or radiation they won't do a decipher test.