FrankTalk.org

Fellow Franktalkers Feb 3
I believe I am going to be told my prostate cancer is back and I’d welcome any experiences FTers have had with salvage procedures and diagnosis of re-occurrence after radical prostatectomy. I know I need to see my doc and have an appointment on Feb.8. I am just trying to get myself armed to ask pertinent (and maybe some impertinent) questions.
BACKGROUND: I am 78 years old. Developed ED after starting HBP meds at about age 62. 10mg Cialis solved our problem until my prostate cancer diagnosis in 2013 (age 73.) Diagnosed with stage 2 prostate cancer, Gleason 3+4 on biopsy. Had robotic assisted radical prostatectomy in July ’73. Lymph nodes clear, no evidence of cancer outside the prostate capsule, pelvic floor biopsies clear. Post surgery biopsy of the prostate said cancer at Gleason 4+3. Surgeon said that was normal variation among pathologists. I had no post surgery hormone or radiation treatment. Clear annual follow ups with undetectable PSA for four years. Fifth year PSA was 0.1 three month follow up was 0.1. three month later was 0.2. I had an implant in Jan. 2016 after unfavorable results with lesser measures.

ASSUMPTIONS:
1} Any detectable PSA post prostatectomy must be coming from a prostate cancer
2 Any cancer is probably microscopic, therefore difficult if not impossible to biopsy.
3) Any recurring cancer is likely remnants of the nastier “critters” in the tumor (I would love to hear that its likely a slow growing remnant)

QUESTIONS:
Are my assumptions valid?
What are FTers experience with post prostatectomy salvage procedures. Tests? Treatments? Results?
I realize they will probably want to do an MRI, bone scan, etc.
I would prefer to avoid a “scattershot” approach such a s general chemo, or radiation. Would much prefer to get data on the location, type and potential spread of any recurrent cancer and do a targeted treatment. Is there one?
Is there sex after salvage?
If you are willing to talk about your experiences, please PM me and I’ll give you a call.
If you are inclined say a prayer for me.
Cincinnatus

Dear Friend,

I am truly sorry for your concerns. My brother went through the same thing at a younger age. He had his prostate remove and after 5 years At PSA 0.1 they decided to do radiation treatment. The treatment was relatively easy on him and his PSA has been 0 for seven years now. He is very healthy and active. He tells me that he is sexually normal, but I don’t think he would tell me the truth. After rectal cancer 5 years ago I have complete ED, but managing great with injections. I’m not telling anyone about my ED, only on this forum. I prefer it this way and so far it has been working.
Wish you good luck and all the best!

I'll keep you in my prayers. I can't offer any advice as I haven't traveled that journey. I'm a prostate survivor also and re-occurrence is always that persistent nagging worry in the back of the mind. Mine was in the margins and the doctor told me he "thought" he got it all (robotic assisted RP) but wasn't 100% sure. I didn't do chemo, radiation or hormone either. So far PSA has held good. You will be remembered in prayer.

FIRST: I pray morning, noon, night and when out traveling. My heat is broken over showing up possibly again. I know you see my post and I do use some colorful four letter words. I believe the God I serve who I believe who created mankind and all that goes with it also has the power to make things happen. I have taken my night medications and I am about to have to stop. Please PM me tomorrow. I want to present your case to a doctor who has treated these things I am sure 50 years and maybe plus more years. For give my type o's as I almost can't find the keys. Please send me a PM I WANT TO PRESENT YOUR CASE TO A HIGHER HORTATORY.

WES

Frank, I haven't been on this site for many months. Not sure what made me look today but was amazed and saddened to read your words..
I'm assuming you are saying that your PSA is no longer undetectable ????
Off the top of my head I have 2 thoughts...
1) I know you dont want to rush into such as radiation but I WOULD SO SO SO SO SO suggest you make an appointment "for discussion" with Dr John Van, the radation oncologist for Houston Metro Urology 4223 Richmond Avenue, 77027. I have talked with SO MANY local docs and he is a million times better to talk with than all the others put together. He is by far the most knowledgeable, he will talk to you like a family member and never rush you out of the door and will not push you into anything... 713-351-0630
2) I have a relative by marriage that was prescribed with the same as me, about the same time as me, but his sounded a "lot" worse with PSA numbers out of the world and problems with lymph nodes. He went to a doctor (I THINK ASSOCIATED WITH MD ANDERSON BUT NOT SURE)who put him on some pills that immediately reduced his PSA readings and he appears to be(and is) as healthy now as he was back then. He also told me that his Dad was also prescribed with P.C. many years ago and has been living with the same pills.. His Dad stopped for a while, PSA shot up but immediately came down with the pills
I will try and call him in the morning to find the name of the Dr.
btw, I have moved house since we last talked, will pm you with my new number
GOOD LUCK ... Dave