New here, After treatment, the waiting game

[5_plus_4]

Diagnosed 12/27/2018: PSA 8.1

FINAL PATHOLOGIC DIAGNOSIS

: A. PROSTATE, RIGHT, CORE BIOPSIES:

- ADENOCARCINOMA OF PROSTATE, GLEASON SCORE 4 + 5 = 9 (GRADE GROUP 5 OF 5),

INVOLVING SIX OF SEVEN CORES (15% OF TOTAL BIOPSY TISSUE); SEE SYNOPTIC BELOW.

- POSITIVE FOR PERINEURAL INVASION.

B. PROSTATE, LEFT, CORE BIOPSIES:

- ADENOCARCINOMA OF PROSTATE, GLEASON SCORE 4 + 5 = 9 (GRADE GROUP 5 OF 5),

INVOLVING SEVEN OF SEVEN CORES (15% OF TOTAL BIOPSY TISSUE)

STAGE T3B N0 M0

I had RP on 2/12/2018, PSA was 0.1 after surgery and again 3 months later, did 37 days radiation ending on 7/21/2018.

NOW I wait until my next PSA test on 9/7/2018. IF my PSA starts rising again I don't know what I'll do.

[Dan59]

So far you have excellent response to rp and radiation, good job catching it early, hopefully you are cured. What was you original psa?If it comes back worry about it then,there are many things you can do to control it for many years, stay vigilant!! Sometimes radiation can cause a psa bump that goes back down after a while.

[Roberthale7318]

Looks like we’re in the same boat .. I will be following your posts hopefully to get a ride on good information your gathering and of course to pass along any wisdom I gain .. One thing is for sure… You must find a doctor or group of doctors that you completely trust and then turn it over to them to do what’s best for you .. I know some will say your own best manager of your health and that’s certainly true but you can’t second-guess your doctors and expect them to do their best . You didn’t say whether or not you had scans ?

I was diagnosed with prostate cancer at the beginning of July 2018 with a Gleason score of 5+4, 5+4, 5+5 and a PSA of 4.7 . I guess that’s a low PSA score with that high of a Gleason . Not sure what that means. I recently had a bone scan and a CT scan . Fortunately the CT scan showed “no metastases .” Unfortunately the bone scan showed “intense activity“ in one spot and “low activity“ in two others.

I’m wondering if anybody has any experience with doctors and hospitals in the Raleigh/Durham area? I have heard that Duke university hospital has a good prostate cancer program. I would greatly appreciate any input/wisdom !

Scared and hopeful, ROBERT

[bw1963 in reply to Roberthale7318]

I'm seeing Dr. Judd Moul at Duke. He is one of the best in the county, but he does not do robotic surgery only the open technique.

[Roberthale7318 in reply to bw1963]

Hey .. well that’s interesting news since I am definitely wanting robotic RP. if that particular doctor doesn’t do it then I would want to search out one of the other Duke docs that does unless there’s a specific reason Open surgery is preferred, if that’s indicated ..

I would love to hear any more about your journey and any of your thoughts on the care that you’re getting at Duke, if that’s where you’re going and are you in there prostate cancer treatment program?

Since I wrote that post this morning I’ve gotten a call from Duke and will be seeing the three doctors in the cancer program on Friday .. I was on the waiting list so I’m happy that’s going to take place so soon ! I would be very grateful for any feedback on the following doctors : I will be seeing Dr. Lee, Dr Moul and I was hoping to see Dr. Daniels but I will be seeing Dr Radonc.

[j-o-h-n in reply to Roberthale7318]

I had open surgery.... My opinion it's better....but to each his own.

Good Luck and Good Health.

j-o-h-n Wednesday 08/08/2018 1:39 PM EDT

[bw1963 in reply to Roberthale7318]

Hi Robert. I finally posted my profile today after being here a few months. After initial diagnosis with my urologist here in Winston-Salem. I asked for a second opinion. I went to see Dr. Moul @ Duke, I did not go to their multidisciplinary program as I had made up my mind that radiation is not what I wanted to start with. He recommend radical prostatectomy (RP) with pelvic lymph node dissection (PLND). I will be having the surgery in Sept.

A coworker went through multidisciplinary program at Duke. He chose surgery with Dr. Moul and was very pleased.

They will explain everything Friday from their different perspectives. Wishing you the best of luck and prayers. Keep us posted!

Bill

[Roberthale7318 in reply to bw1963]

Hello again BILL ..

I certainly appreciate different points of view and I’m just wondering why he thought open was a better option? Also read your bio and wondered if your biopsy results were consistent in the three different opinions you got?

I wish you nothing but the best in September and thank you for the encouragement, good wishes and prayers !

ROBERT

[bw1963 in reply to Roberthale7318]

Hi again. Not sure why he chose open, but to me a robot can't feel like an experienced surgeons hands. Another thing is one incision versus 5 holes, one being through your abdominal wall.

The one posted from Dr. Epstein showed the most. The other two were consistent with each other. I paid to have them sent to Epstein for a review as he supposed to be the foremost pathologist on prostate cancer.

If you want to learn some more on Dr. Moul, go to utube and search for Dr. Jubb Moul. Some good interviews.

Bill

[j-o-h-n in reply to bw1963]

"a robot can't feel like an experienced surgeons hands".

Those are my thoughts exactly... but I didn't mention them because I thought most people would think I was naive.

Good Luck and Good Health.

j-o-h-n Wednesday 08/08/2018 8:04 PM EDT

[Roberthale7318 in reply to bw1963]

Good morning BILL… Does make sense ! Thanks for the YouTube suggestion !! Stay strong and i’m sure a good result in September coming your way !