Up date from PSA test and Uro Visit - another setback

David:

Did your doctor mention how they can ascertain which variant you have (in fact, can they?).

I guess if they can do that, then maybe they would have some predictive values?

Mel

If anyone has doubts about the "support" nature of our group - just point them to this thread. I am overwhelmed with the well wishes and good thoughts from our little world here, and I deeply and sincerely appreciate all of them. I am fortunate to have good and comprehensive family support in my life, but even with that, there's not the same level of understanding of what all of us go through here. And our "sisters" here, are such an asset to what would otherwise be a "men's only" setting. Many of us are long time married or significant other situations, and some single of course, but I feel that the women that write on behalf of their husbands or brothers or sons, etc, just add quality to the place. I believe Sephie was one of the first women I became acquantied with when my voyage started here, and I will never forget the comfort I received from her posts to me.
Sephie if you are reading this, we still want to make that long overdue trip to NYC to see you and John!

Michael - what was your last number pre-srt, I cant remember?

Mel - all 3 radiaton oncologists I met with said, that with SRT, there should not ever be a rise, not even a small one, that there is no bounce as there is with RT as a primary treatment. My uro, agreed with that accessment today to. I was expecting the number to be in the .15 to .20 range, I was a bit blown away at the moment of impact, lol. I knew from my doctors face, as he was holding the PSA results, that it wasn't going to be good. I hope that yours is of the more normally expected small increase. Not trying to jinx you, but from studying your posted history, I would expected another rise to confirm BCR with you, and of course, my friend, I hope I am dead wrong.

David,

Your update hit hard over here, so can only imagine what its like 7 miles west in Easley. The rest has already been well articulated by the HW gang.

You may or may not know that Medical Oncologist Dr. Charles "Snuffy" Myers is just 309 miles up the road from us in Charlottesville, Va. A person to person consult may be worth the trip considering what's at stake. Here's his appointment link: http://www.prostateforum.com/AIDP.html

Don't know if SC BCBS will pay for the consult but it's worth a call to (800) 868-2500 to find out. I'm thinking they will, but don't know for sure.

This is an up, overnite and back trip if you want to make it and, with a little notice, I'll be happy to break away from my busy schedule (yeah, right!) and be your chauffeur.   We could even catch Monticello while we're there if you feel up to it.

Hang in there,

Mitch in SC

 

Post Edited (Mitch128) : 2/28/2011 7:18:00 PM (GMT-7)

JohnT - I was thinking about the luck part, I remember my original medical oncologist remarked that when it was confirmed the 3rd time that I had the ultra rare porocarcinoma, he said the odds of just getting it once, was like winning the powerball 4 weeks in a row. All kidding aside, my uneducated guess with all my cancer events - I feel had a lot to do with all the exposure I had in my early 20s to extremely toxic materials, i.e. formlyahyde, and others. In those days, you did what the boss said, and there werent MSDA sheets on the stuff I was soaked in for hours at a time. Just a guess. Cancer of any type is extremely rare in my family line. Heart problems are usually the culprit, and touch wood, I appear to have a strong healthy heart.

142- tsk tsk, its not that I am being negative, look what i have dealt with for over 2 years, i consider myself a realist.

mel - no, my dr. ellude to knowing what type of variant, if any, he was talking about the subject of all the sub variants in a general way, and how useful it would be to be able to test accurately for an exact variant type, to aid in treatment decisions

I am so sorry David.  I hope the upcoming tests and dr visits shed some light on the course that is best for you.

Ray

Darn David,
Sorry to hear the results. I'll keep you in my thoughts.
Dave in Durango CO

Hi David, I'm so sorry to read about this. Have you discussed or considered diet to perhaps slow the growth rate. Isn't there widespread belief that pomegranate can somewhat help at this stage? I haven't done research on what can or might help, so if I'm out of line, pardon me.

I feel bad about your latest number. Wish I could pull some magic and make it vanish.

Post Edited (Squirm) : 2/28/2011 8:02:19 PM (GMT-7)

Sorry to hear the news David.
Best wishes mate,
Mike

I'm at a loss for words, but my thoughts are with you. Mira

Dear David,

I am so sorry to hear of this news - it's hard to believe there has been so much change in such a short time. I am sure that you are feeling pretty shocked at the moment as are your friends in healing well.

In terms of testing for varients - Dr Helmut Bonkhoff is an expert pathologist who does exactly that. The testing of the varients helps you work out what is the next appropriate action and to me it would seem that it would be well worth doing this as your cancer is so unusual.

Regards,
An

Sorry that the psa didn't go the right direction... actually I would be stunned but you have demonstrated that you are very durable and will figure out what is best for you and your family going forward in your time.

Best wishes going forward,
Jake

Thanks again, Gents and Ladies. Lot of good encouragement, and some good advice too. Taking it all under advisement as they say.

My wife and I just finished a lengthy discourse on the situation, as she had just left for work when I had to go to the Uro. Trying to put it all in perspective, and I am one that puts the problems in my life in seperate containers, not one to throw the baby out with the bath water.

Just going to work through this big set back in a progressive order. Will have the kidney test done Thursday morning, the meeting with my GP Thursday afternoon, 2 episodes of physical therapy this week, then next Monday, the new bone scan test. Then will re-evaluate the situation after getting all the tests results in.

I may have to seek a new medical oncologist, other than the one that helped me so much in the past, as he is part of the group that I am the middle of litigation with, sounds like it would be an awkward situation, and may have to get some legal counsel on that before proceeding.

The shock value of today is over with me, and like the dummy I am, I have bounced back up and ready for some more action.

PC is never going to take this guy out without an hell of a fight, have said that from the start of this twisted journey.

David

You all are a great bunch for real.