@oskarpr,

I would echo what JC 76 said earlier. This is a complicated disease, and those of us with intermediate Gleason scores often have a choice of the smorgasbord of many treatment options. Easy to get overwhelmed.

I was diagnosed in September 2023, then spent about three months researching with my wife. The book “Dr. Patrick Walsh’s Guide to Surviving Prostate Cancer” was extremely helpful. We watched lots of the videos on the PCRI website (prostate cancer research institute). Prostate cancer foundation PCF) is another good source.

We also used Mayo Connect a lot. And tried to stay on top of the most recent validated research.

Be sure to get second opinions—of doctors, and of your initial biopsy pathology report. We interviewed one urology oncologist (surgeon) at Mayo Rochester, then a radiation oncologist. We weren’t super happy with either of them. It really helps to mesh your personalities and find someone you can totally trust. And, very importantly, find the best provider who is very experienced in the type of treatment you have chosen.

W then, after watching the PCRI info videos about a radiation therapy called brakytherapy (radioactive pellets inside the prostate to kill the cancer) we thought that sounded the best for me. I had been diagnosed 3+4 = 7 Gleason, staged level two, no extra-capsular extension (i.e., cancer had not broken through the actual prostate to outside areas).

You should say that I was lucky at the very beginning, because it had not actually been the PSA that pointed me toward PCa, I just had an unrelated back ailment and the CT scan happened to see the lesion, followed by an MRI, then biopsy.

We were advised by a mentor at PCR I to be sure to get a second opinion on a biopsy, and to get it from Johns Hopkins. We did that, and Hopkins found “large cribriform morphology,” which the Mayo pathologist had not noted. Then one of our brothers on Mayo Connect said to get a Decipher (genetic) test, which can give other good clues about the aggressiveness of your cancer.

Up until the second opinion from Hopkins, and the Decipher test, (which came back as .8, very aggressive) it had been assumed that my cancer was not aggressive; it was “intermediate favorable.” We had seen a Radiation Oncologist, whom we found on the Mayo Clinic website as being most experienced with Breakytherapy, and had set up the procedure for January. But after getting the Decipher score back just after Christmas, we decided to cancel that procedure and go the radical prostatectomy route.

So we needed to find the best surgeon. A generous and informative brother on Mayo Connect recommended Dr. Igor Frank as an excellent surgeon with a good bedside manner. (I believe he was the first at Mayo to use a robot with that surgery back in 2005.)

We met with Dr. Frank upon that recommendation, and were extremely impressed with him. He’s done thousands of RP’s, plus he is warm and friendly and has a great sense of humor. We were lucky to get in to see him fairly quickly because of a cancellation.

We met with him and his nurse a second time to finalize our decision, then I had surgery in late February. One of the reasons we had chosen surgery was because the entire prostate is taken out and biopsied post surgery, which gives a much better idea, more quickly, of the nature of the cancer. (The biopsies can be kind of hit and miss.)

This was attractive to us because we wanted more certainty more quickly following treatment. Sure enough, after the surgery my biopsy showed 4+3 with a higher percentage of 4, than the original biopsy did.

Three months after surgery, PSA will be retested and is hopefully undetectable (less than .1)—that will indicate the cancer was eliminated. But with radiation, the PSA bounces around for several months or even a year, as I understand it, so it would have been many many months of worrisome waiting to find out if it had been successful.

Another major reason we went with surgery was because if you need salvage treatment for cancer left behind after surgery, you can do radiation. But it’s very difficult to do surgery for salvage if you do radiation initially.

Surgery was successful. Dr. Frank took out the seminal vesicles, where it turns out the cancer had spread, but he found no indication of further spread, so did not remove lymph nodes. (He also found sort of a random nodule outside the bladder, which he took out. (It was benign.) All of his work showed negative margins, meaning that it looked like there was no cancer left outside of where he was cutting.

One sidenote. We live about an hour from mayo Rochester. On the way to surgery, 5 AM on country roads, we totaled our car in a one car accident. We weren’t hurt, luckily, but I was about to call Mayo and cancel the surgery when some Good Samaritans stopped and helped us out of the ravine, and gave us a ride all the way to the correct door at Mayo! (Thank goodness for Minnesota Nice.) 😊

This Monday it will be three weeks since the surgery. The first week or two were hard; my wife and I were dealing with several other issues at the same time, and having the catheter in for a week wasn’t a joyride. But hope, prayers, optimism and good humor— along with the prayers and support of countless family and friends —pulled us through.

I am not a medical professional, so all of this information is just from my personal experience. We are all different, so you must find what is best for you.

Sorry this is so long! Feel free to private message me if you want clarification or more info about my story.

Most important: do your research, and stay positive, hopeful and optimistic. You got this!

Jim G