Cancer Journey

First of all thank you to everyone here that shares their experience and expertise. I have learned so much from this forum. Like many wives of husbands diagnosed with prostate cancer we become their biggest advocates and cheerleaders. Here is our ongoing story which started 13 years ago. My husband was diagnosed with prostate cancer after PSA's hit around 5 or 6. Standard biopsy at that time found the cancer confined to one side and gleason scores were 3+3 with one area 3+4. After looking at all treatment options he decided to have HIFU. I don't see that on this forum very often so thought some people might find it interesting. He had a hemi ablation performed in Bermuda by Dr Scionti scince at the time it was not approved in the US. Oh forgot to add that prior to the procedure he had another MRI guided biopsy with Dr Scionti. My husband chose HIFU because of the limited side effects and he was in his early 60s. We always knew the cancer could reoccur. But he still says if he did it all over he would still have opted for HIFU.

Fast forward to last year when PSAs started to rise. I won't go into all the numbers but went from 2 to 4 within 18 months. Meanwhile we have moved to a rapidly growing area with not enough doctors for all the people. He had to wait for a Urology appointment for 6 weeks and this Dr wanted to do an old school in office biopsy. Well, just no. When my husband requested an MRI fusion biopsy, this Doctor got mad (probably because he doesn't know how to do them) and referred my husband to another doctor- guess what? another several weeks for an appointment. Then another few weeks for the MRI and another few weeks for the biopsy. Nothing moves fast here. MRI showed adenocarcinoma 2 lesions both RAD5- one with seminal vesicle intrusion.

Biopsy -I will need to try to add the report, but the short version was most cores showed adenocarcinoma, gleason score 3+3 with no seminal vesicle intrusion. This doctor wants to do cryotherapy. We are a bit baffled about the wide disparity between the MRI and the biopsy. We ask for the slides to be sent to Johns Hopkins. Six weeks later we get the results. Most cores are still 3+3, but 3 have PI. And, OMG, one is 4+5 with extracapsular extension! How could the first pathologist have missed this??!! Doctor says he'll have his lab recheck that one result. Sure enough they now have an addendum on the pathology report saying they tested "deeper" and agree with Johns Hopkins findings. And this doctor still wants to do cryotherapy! Now, what worries us is that this is the fragmented sample that the local lab said had "benign" seminal vesicle tissue. Johns Hopkins worded it differently. "No definitive" seminal vesicle intrusion. I feel that they left this open that maybe they just didn't have enough tissue to say that there wasn't involvement. So, we have gone from first biopsy saying mild cancer (where that doctor wouldn't order a bone scan or a PSMA even though we asked for both), to now having an aggressive cancer. We have no faith in this doctor or the whole system here. We are scheduled to see someone at Duke next month. I'll feel much better with having them look at everything.