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Posted 4/29/2009 11:04 PM (GMT 0)

Had six week RRP follow up today with urologist. Positive margins and some node involvement in path report had me braced for more of seemingly endless stream of negative news and i wasn't disappointed.

PSA .6 and uro's demeanor was not encouraging. At first he discussed the possibility of a "prostascint test" to determine if the PSA was being generated by a local or systemic presence. But as the discussion wore on he suggested that I wait 4 weeks, do another PSA test and if the climb continues immediately begin ADT. Because of my high Gleason and the size of my tumor he seemed somewhat less than optimistic about the possible effectiveness of the ADT. I asked a lot of questions but I left in a funk with of course several unasked.

Don't the presence of positive margins suggest that some residual cancer was left behind locally and couldn't this residual cancer be responsible for the PSA?

Anyway, I refuse to tone down my expectations and I expect to hang tough for a long time. I am searching for a good medical oncologist as I feel that I need more educated reinforcement. For tonight I'm sitting back with a glass of good Chianti and taking a break from the war.

Sincerely hope that all of you are well and staying positive.

Oncas (Jim)

Posted 4/29/2009 11:21 PM (GMT 0)
Oncas,
I like your attitude and you are on the right track in seeking a specialist oncologist. I also like the idea of an attempt to locate the source of the PSA with rigourous scanning........every bit of information helps with the next step. It is simply a fact of life that most urologists are not up with the intricacies and latest developments in treating Pca. This is not to suggest they are not very good at what they do but the nitty-gritty of PCa is not their field of expertise. If you haven't done so yet check out the detailed experiences of the journey of the higher Gleason fellas on the 'Yananow' site :

www.yananow.net/Chart-Gleasonu6.htm#8

Enjoy the Chianti turn
Bill
Posted 4/29/2009 11:55 PM (GMT 0)
Jim, sorry your visit didn't get any better for you, and my ex-bosses fave saying was "it is what it is". Sounds like you are taking the bull by the horn, and you should. While all that is going on, drink that wine, do what you like to do, enjoy living. Your story has a long way to go, and a lot of paths out there, keep on keeping on as they use to say. My best to you brother, make the very best of a potential bad situation, who knows what twists and turns may lay ahead for you. With you all the way.

David in SC
Posted 4/30/2009 2:11 AM (GMT 0)

Jim,

Sorry for the bad news. If you have lymph node involvement then you can be fairly certain that the reoccurance is not local. Don't waste your time on another local treatment. As soon as this was discovered why didn't your doc put you hormone therapy? Best advice is to go on ATD3 as soon as possible. Find a good prostate oncologist and follow his advice.

JohnT

Posted 5/3/2009 1:18 AM (GMT 0)
I to am sorry to hear the news my friend. I would agree with a second opinion, however in my limited opinion I believe time is of the essence. I to think ADTs is the protocol but hey I am no doctor. I to had positive lymph nodes and had 44 IMRT's and now have been on ADT3 for two years. Stay in touch with me, I would love to follow how you are doing.

peace and love
dale
Posted 5/3/2009 3:24 PM (GMT 0)
Jim-
Sorry to hear that the news wasn't better and that your dr. wasn't more encouraging. I am very surprised regarding his lack of optimism regarding ADT. I would definitely find a second and third opinion. There are many men that have had lymph node involvement that have done extremely well for long periods of time. My father had a lymph node involved and we decided on HT and salvage radiation. His PSA came back undetectable after surgery (.07 and then down to .05) and we decided to take the attitude of how do we know that they didn't get it all or if there is any left, why wouldn't it be in the prostate area! and why wouldn't radiation work. One of the questions that always comes to mind, is that if you wouldn't have had the surgery and opted for radiation, you would have never known there were a couple of positive nodes right?! Now, you know, but that just means that you are better equiped for the next step. We found Dr. Snuffy Meyer's book to be extremely encouraging and if you haven't read it, I would definitely encourage you to do so.
On another note, my husband is a dr and called a radiation oncologist friend for an opinion regarding my father's case and he shared that his father in law had local lymph node involvement and underwent radiation (I can't remember if he did ADt, but I am assuming so), anyways, it was 14 years ago. He is doing great today and I hope and believe that this can be the case for both you and my father. Stay positive and keep us posted!! All the best to you!
Posted 5/3/2009 3:32 PM (GMT 0)
P.S. I was under the impression that regardless of post op PSA if there is a node involved, immediate ADT is the standard and has shown the best results as opposed to waiting. On another note, a lot of Dr.'s wait 12 weeks for the first post op PSA, so I will hope and pray that in 4 weeks, your PSA will go down. (My father's did as you can see from my signature) There is hope and there are options!!!

P.S. Chianti has always been one of my favorites :) Hope it was fantastic!
Posted 5/4/2009 5:53 PM (GMT 0)
Jim,
You may wish to consult a radiation oncologist anyway. No harm is asking his advice. IMRT with pelvic node and prostate bed treatment has indeed kept PSA lower over time in such cases. It is still being debated on the mortality rates but we haven't enough data for it yet. I chose that rout with ADT and I am happy to say two years later I am doing well.

Chianti is near the top of my list as well. Anything red usually for me will be good.

Peace,

Tony
Posted 5/5/2009 12:10 PM (GMT 0)
Hang in there Jim.  We all wish for that good report each and every time one of us goes for the next doctors visit and we feel for anyone who doesn't receive the news they would like to get.  Thanks for sharing with us so we can follow you down whatever path is laid before you.  Like some others have said, I would be headed for a good oncologist who specializes in prostate cancer.  There are lots of options and while prostate cancer seems to be slow growing, why wait!  Please keep us posted and know that you have brothers and sisters who are walking the same or similar paths and regardless of what stage or prognosis we have individually, we can support each other as we move along the path to healing.  God Bless!  David

Posted 5/5/2009 3:13 PM (GMT 0)
Hang in there my friend and I agree with Vegas on not ruling out radiation.  Evidence continues to build that in cases like yours that the radiation may not cure you but can still have a very positive impact on your survival, especially with high gleason scores.  They don't understand the reasons at this time but when you are in our position who cares if it gets you to the finish line.

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