Knowing ASAP if with recurrence - Your Thoughts, Please!

Also,Rose - go to the American College of Radiation Oncologists. A few years ago I read that the 10 year outcomes for surgery and cyberknife are THE SAME. At 71 that puts your husband at 81 - not a decrepit old man but not a young one either, right? My symptoms from RP - complete impotence even with meds, occasional incontinence and chronic constipation ( NEVER had it before surgery) which 3 specialists cannot figure out. If you have an active sex life it is something to consider.
My business partner just had cyberknife ( age 72, no hormones since Decipher test was favorable. 5 treatments and so far he’s doing fine. The Doc told him that if PSA RISES in future, seeds will finish the job.

Rose, if you are looking for a great surgeon at Mayo-Rochester I would highly recommend Dr. Igor Frank. He has done thousands of radical prostatectomies, and was the first at Mayo to perform the robotic RP. He is not only an incredible surgeon, but has outstanding bedside manner. I am not someone that really cares about bedside manner, but it was amazing - He is willing to talk to you for as long as you want, answer all questions/concerns you have.

Good luck and praying your husband has the best possible outcome.

Jim

Certainly, my Gleason Score was 7 (4/3). Eleven of the biopsy cores were positive for PC. My scans also showed "no" spread to lymph nodes or seminal vesicles.

I hope you are scheduled for a RP at a center of excellence and have chosen the best possible surgeon at that COE. The quality of your life, for the rest of your life, will depend on the competence of your surgeon and support staff.

Best of luck with your surgery!!!

Jim

Rose. I agree with Hammer about the benefits of RP and that is what I had 18 months ago, then 6 months of ADT and Erleada. For the last 12 months my PSA has been .01 , which is good. I get tested every 3 months. I am Gleason 9, aggressive, advanced and castration resistant ( hence high risk ). RP is better in evaluating the cancer and it reserves future treatments of radiation, however if you have radiation first then RP is no longer a treatment option. The surgery and the meds were an irritation but manageable. Good luck

Hi Again Hammer101, Hmmm. We’re not really pleased with Jim’s urologist's way of communicating. We expect he's competent and figure since we’re already 3-1/2 months since diagnosis, that the clock is ticking, and so we "should" probably go with him. But, it doesn't feel just right. We’d like a great doctor who we're comfortable talking to and really feel listened to!

So,we’re excited about perhaps connecting with Dr. Frank, who sounds great. My biggest concern is how long it might be to see him and get on his surgery schedule. With the high Decipher score, we don’t want to delay surgery too much longer. As good as Dr. Frank is, he may book out for appointments longer than we feel we can wait to move forward to surgery.

Ahh, a couple ideas come to mind. Maybe a favor that we might ask of you that I’ll private message you about. Of course, please feel comfortable to decline this favor request! But, hey, it doesn't hurt to ask you, right?!

A connection with Dr. Frank is something we'd love to pursue. Please do respond when you read this and the private message, so that I know that you did read them, whatever your thoughts might be about what I’ve asked. I've never sent a private message on MayoConnect. I’m going to try and hope it gets to you.

And just a couple personal questions. Just curious if you live close to Rochester? Jim and I live about 45 minutes away, on a rural property outside Winona, Minnesota. And maybe your real name? (Provided by private message, if you'd prefer AND are willing to share.) That way we could “drop” your name, if we are able to meet with Dr. Frank! Just let us know what you think of my ideas in the private message, OK?! Sometimes I think wonderful happenings just fall into one’s lap. I’m hoping this conversation might be one of those happenings! (I want Jim by my side for many years to come!!)

Wishing You All the Best, Rose

Hey hbp, I'm overwhelmed with gratitude for all the wonderful, encouraging and very helpful messages that I've gotten for Jim and me! He has been leaning toward RP since we learned of the aggressive Decipher score. I was definitely hoping that RP would be his choice, based on all our research and the many excellent comments shared on this thread. I think his decision has been made! Now, hoping for a good scheduling and successful surgery! Thanks for sharing your thoughts and a bit about your "journey." It's so encouraging to read of good experiences like yours. May you continue to have good health in the years ahead!

Hey Heavyphil, Thanks for sharing this information. There are so many options. Which is great but also rather mind boggling! I've read just a bit about cyberknife. It's something I'm interested in knowing more about. Thanks for the mention of the American College of Radiation Oncologists. When beginning to look at treatment options, it was the list of symptoms that steered him away from surgery as a first choice. But now, as I've said, it's something he's strongly considering. I look forward to when his right decision is made! Sorry, to hear that your post-surgery symptoms have been what they are. Wishing you well in your future!

Well, you don’t hear many men complaining about side effects with Cyberknife. However, I have never met anyone who had RP who DIDN’T have them - some life long. With 10 yr outcomes the same - and seeds available as a backup - at age 71 I would go with Cyberknife. But I can only say that having gone thru RP, having miserable side effects, and having the treatment fail anyway. Seeds were not an option for me since I had a previous Green Light laser which made seed placement risky.
Again NO ONE Can tell you what to do; but even my surgeon told me that if I had been 74 instead of 64 even he would have recommended cyberknife. Just my opinion - not medical advice!

I had RP at age 72 at Johns Hopkins and my recovery was excellent.
There should a number of excellent surgeons at Mayo Rochester. You need to be comfortable with the choice of a surgeon.
Begin Kegels preop w/ professional PT.
We are all different and respond differently. I was fortunate not to have any surgical recovery or continence issues. ED is a side effect that is slowly recovering.
No question that I would choose surgery.
However, points made by others are valid for consideration.
Best wishes.

I want to thank the support group for the call yesterday regarding prostate cancer and depression.

As with many of my brothers here I have had dark moments. The presentation let me realize my dark moments are not symptoms of depression. I now know depression is not a concern I have to address.