Update 1 yr post rp, help

It has been almost a year since my husbands rp. It has been an unbelievable ride with additional 9 day hosp stay I month after surgery due to JP drain block (excess fluid). In this past year many things have happened, lost both of my husband’s parents, significant skin cancer/surgeries for me, we have both lost jobs. We read your posts and so appreciate all the sharing! As all of you, our new normal now includes medical appointments and medical decisions many times not knowing which way to go or what to believe. So here we are, one year out, reaching out to all of you for help.  After surgery we learned results:  Gleason 9, pT3B, pN1, Mx with 1 positive margin. There were 2 nodes (above bladder) out of 11 pos. Psa at 6 weeks came back 0.7 and dropped to 0.3 in Oct 2011 and then up to 0.56 in Jan 2012. Shortly after surgery we went to Columbia. One Dr. wanted to start HT and other Dr. was strongly in favor of diet and supplements. We went with diet and supplements as a trial as we continued to gather more info.  Up until Jan the psa was continually going down. When it started to rise in Jan to 0.56 we went to see Dr. Myers. He opinion was that we are going for cure.  We were scheduled at Sandlake for imaging until we learned that my husband could not have fereheme due to  a genetic mutation that could cause possible iron overload. Because there is not another test that can show this detail we are in holding pattern.  Dr. Myers prescribed avodart and celebrex in Jan and was not in favor of starting HT.  HDT dropped and psa is at 0.4 now.  We are going to see all docs in the next three months and will be gathering info for the path forward. ED is OK with pump and meds (amazing since one nerve removed and the other reattached).  Incont. is an issue but not our biggest worry. Have been through biofeedback, etc. We reach out to all of you in hopes that you may see something here and be able to shed some light that will help us in this ever changing and complicated pc world.  Your experience is invaluable and your opinions will be so appreciated. We do not have any bias just want best path forward. Fyi- My husband is 58 yrs old, very active, with no other health issues at this time . Your experience is invaluable and your opinions will be so appreciated.

Searchmode...I agree with nhwife. I can't add anything except my prayers and best wishes to you and your husband.
Please keep up with your own health issues.
xoxoKathy

Searchmode, you have my prayers and support. A somewhat complicated case - have your docs ruled out radiation? No advice to add here but listen to your docs.
Jeff

Mrs. Mode:

I think he and you have done an outstanding job so far. With the post surgery pathology I am impressed with the stability of disease with such mild treatments, considering the alternatives. Myers loves patients such as your man. You become a test group of one patient. There are other non-hormone treatments available which can provide more time, and buying time is all that any of us on the planet is doing.
There has been discussion of Choline C-11 (Carbon isotope) imaging and there is also C-11 acetate agent for the same purpose. This uses a PET to detect emissions from the isotope within the body and some say is as effective as Feraheme. You can search for the many internet references to these scan/agents.
Nonetheless he is at an interesting and well positioned place at this point and his efforts to establish care with the very best providers has clearly shown success. Despite the travails of the past year he, and you, have come out on the other side with knowledge, experience, and above all compassion and caring for each other.
Salute!

Post Edited (tarhoosier) : 5/6/2012 8:38:12 AM (GMT-6)

What a tough road, but with your husbands pathology results, he has done amazingly well so far. I my view you can't be in better hands than Dr Myer's. I see him as well. He is one of the best and will alway go nfor a cure if he thinks it's possible. Hang in there. BB