Really bad path. report, need others input to options (Was No Subject)

Still a bit clumsy at navigating threads and proper posting on this forum so forgive me if i am repetitious.
Finally got a call from my urologist last night concerning the frightening path reports from my RRP on 3/26. As I suggested in an earlier post, everything was much worse than expected. A Gleason 9 tumor consuming 80% of gland. Positive margins, positive sem vesicles and unfortunately 2 of 9 nodes positive. He feels that the best option is to wait until there is a significant rise in PSA and begin hormonal therapy. He felt that given my stats this was only realistic course of action. I trust his opinion but I was disappointed that his path of attack was so narrow. Obviously my disease is seriously advanced but as I understand the protocol, hormonal approaches usually only hold up for a year or two before the cancer regroups and mounts another advance. My intention is to seek the advice of an oncologist in the interim, but the wait and see approach at this juncture makes me really uncomfortable. Does a node positive pathology always contraindicate any local treatment? Will chemo be the only option after hormonal? Yeah I know ... these are questions for my dr. but we all throw them out there anyway. Best to all my brothers in the trenches

Oncas (Jim)

Added a Subject for archiving purposes

Post Edited By Moderator (James C.) : 4/10/2009 5:53:07 PM (GMT-6)

Jim,
I can't recommend enough that it is time for a medical oncologist who has a strong PCa background. In addition, a radiologist might be in a difference of opinion with your urologist. Your diagnosis warrants being proactive and leaving no stone unturned. Node involvement means usually that there will be no local cure, but there is still benefit to treating involved nodes with radiation. Even if a radiologist won't proceed on his judgement, there always one opinion that matters most. You are you own advocate and make all the calls. If you want to start HT and radiate, it's not your urologists call, it's yours. But don't do anything you don't understand what you are getting into with. QoL (quality of life) is the name of the game. Each step has side effects, but I have done well with them.

If HT fails, there are many things in reserve. But you really need that medical oncologist that specializes in systemic treatments. He should be well versed in when to act, and also every on every available clinical trial. I have taken these steps and it isn't too daunting at all.

Jim, I don't recall where you are. I am certain we can tell you where you can narrow your search to.

Tony

---

Age 46 (44 when Dx)

If waiting it out as your Doctor has suggested is what you end up doing Jim, maybe adding modified citrus pectin? Just a thought. It was the very first thing my general physician suggested. He knows I feel better doing anything rather than just waiting. Once I decide to get going that is...I prefer to be the ostrich.

Goog Luck,
Paul

---

 

Gosh Jim I'm not even in the same league with OhioState and TC-LasVegas, but I can agree with them and offer my best wishes to your success in beating this vile demon we all deal with.

---

Age at DX 57

Hi Jim,
Sorry your post-surgical statististics were not more promising but that's not the end of the story by a long shot. Keep in mind you debulked a lot of cancer by removing your prostate. I am glad to hear you are engaging a medical oncologist for a second opinion. I went to a medical oncologist in 2001 and manipulated hormones from then 'til now, so that's more than a couple of years. I wish you the best.

Dave

---

Dx'd 1999, Age 60, PSA 43, Gleason (3+4=7), T3c
42-3d EBRT w/Lupron/Casodex for 24 months and PSA remaining to be <0.1 for the entire 24 month period.
July 2001 - 2nd opinion required to go intermittent ADT.
MDAnderson biopsy revised Gleason (4+5=9).
Intermittent ADT, Lupron only, with PSA threshhold established at 1.0.
March 2007 - Diminishing returns with Lupron, conferred with MDA urologist for bilateral orchiectomy. Uro asked for biopsy of prostate again. Biopsy resulted in tumors found with Gleason (5+4=9).
August 2007 - RRP and bilateral orchiectomy. PSA <0.1
99% continent immediately
September 2008 - PSA 0.45
November 2008 - PSA 0.67
December 2008 - Resume Casodex
December 2008 - Stricture in bladder neck requiring surgical removal. 99% incontinent immediately.


Life is not waiting for the storm to pass, it's learning to dance in the rain.