Gordy, a question for you

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dkob131
Regular Member


Date Joined Apr 2008
Total Posts : 364
   Posted 11/12/2008 10:45 AM (GMT -6)   
Les:  As you can see by my signature it looked like I have had a pretty good outcome so far but there have been some issues that have not been resolved and I'm thinking about going to M.D, Anderson to get a second opinion.
 
I had robotic surgery on June 19th 2008 at the University of Washington, my stats all looked good before and after the surgery, my PSA is still undetectable >0.02 but I have had hip pelvis pain for sometime, I talked my Uro into doing a bone scan(he thought it was a waste of time but he agreed) and it came back with two hot spots.  One in the pelvis and one on a rib on my right side.  He wanted to just watch them because he said with my PSA undetectable there was no way it was related to PCa.  I was having none of that and had him refer me to an Onco who has scheduled an MRI for later this week but he has the same opinion as my Uro, it will be a wait and see situation even if the MRI comes back positive for a lesion because he says there is very little chance it has anything to do with PCa.  He didn't rule out any other type of cancer but has done some pretty exhaustive exams with me(bloodwork and physical) and can't come up with anything.  We discussed false positive bone scans but I am having some discomfort in both areas that showed positive. 
 
The reason I'm checking with you is I am considering going to M.D, Anderson for a secon opinion and saw that you did the same.  I was wondering how your experience was with them. 
 
David
 54 y.o.
 Diagnosed 4/10/08
 DRE Normal
 PSA-5.5
 Biopsy- 12 cores, 4 positive highest 4+4=8
 Bone scan, CT scan and Chest X-ray clear 4/16/08
 Urologist suggested surgery 4/16/08
 MRI on 4/24/08 clear no suggestion of lymph node   involvement.
 4/24/08 -Started on Lupron and Casodex preparing for HBRT and IMRT in late July.  This treatment will not preclude me from surgery if I change my mind.
Decide to have DaVinci surgery after another consult with surgeon.
6/19/08- DaVinci surgery at University of Washington.
6/25/08- Path report, clear margins, no noted extension
9/12/08- PSA <0.02 


dkob131
Regular Member


Date Joined Apr 2008
Total Posts : 364
   Posted 11/12/2008 10:48 AM (GMT -6)   

 >0.02 should have been <0.02

David


 54 y.o.
 Diagnosed 4/10/08
 DRE Normal
 PSA-5.5
 Biopsy- 12 cores, 4 positive highest 4+4=8
 Bone scan, CT scan and Chest X-ray clear 4/16/08
 Urologist suggested surgery 4/16/08
 MRI on 4/24/08 clear no suggestion of lymph node   involvement.
 4/24/08 -Started on Lupron and Casodex preparing for HBRT and IMRT in late July.  This treatment will not preclude me from surgery if I change my mind.
Decide to have DaVinci surgery after another consult with surgeon.
6/19/08- DaVinci surgery at University of Washington.
6/25/08- Path report, clear margins, no noted extension
9/12/08- PSA <0.02 


Gordy
Veteran Member


Date Joined Jun 2005
Total Posts : 528
   Posted 11/12/2008 5:33 PM (GMT -6)   
David-

I can't say enough good things about MDA and Dr. John Araujo. I am absolutely convinced I'd be dead, or on my way there if not for John Araujo.

Please write me at alva36@gmail.com and we can discuss further and exchange phone numbers, if you'd like.

-Les
1/2005 Dx PSA 26.5 Gleason 7 (4+3) @Age 61
1/2005 Start Casodex and Zoladex
PSA drops to <0.01
7/2005-8/2005 5 weeks of IMRT and then HDR brachy
1/2007 Rad Oncologist orders CT scan of pelvis
because of complaints of pain in both thighs
MRI confirms pain not caused by cancer BUT
1/2007 CT scan of pelvis picks up a nodule at bottom of left lung
5/2007 CT scan of lungs shows 1/2007 nodule has grown and
there are numerous nodules on both lungs.
6/2007 Thoracic surgeon removes wedge of left lung for biopsy
6/2007 Path report says 95% chance of metastatic PCa, but she's
never seen cells like this before.
8/2007 2nd opinion at M.D. Anderson in Houston.
They confirm: mutated PCa, very rare, but seen there 2 or
3 times. Recommendation: have CT scans every 6 weeks
and watch for change. At that point start chemo and will
survive for 22 - 24 months thereafter.
PSA still undetectable, but get Lupron shot to bring T down from 27
2/2008 Trip to Houston – PSA now 0.5 and nodules larger. Lupron shot.
6/2008 Trip to Houston - Finally got results from doc. A number of lung nodules have grown, but, more important to him, is the fact that the malignant lesion on my pelvis seems to have flared up and he wants me to start chemo. He said I could wait a few months, but I told him I want to start now. He to get me signed up for a clinical trial in nearby NY.
9/2008 Interim bone and CT scans show progress vs. scans done before beginning trial. I'm cautiously optimistic. Next scans 10/30/08.
10/2008Bone and CT scans continue to show improvement. Med onc attributes mostly to Taxotere/Prednisone while I believe majority of progress attributable to investigational drug, Sprycel.

Post Edited (Gordy) : 11/12/2008 3:38:27 PM (GMT-7)


dkob131
Regular Member


Date Joined Apr 2008
Total Posts : 364
   Posted 11/12/2008 6:52 PM (GMT -6)   

Les:  Thanx for the quick reply, I sent you my phone number.  Call anytime you have some free time.

 

David


 54 y.o.
 Diagnosed 4/10/08
 DRE Normal
 PSA-5.5
 Biopsy- 12 cores, 4 positive highest 4+4=8
 Bone scan, CT scan and Chest X-ray clear 4/16/08
 Urologist suggested surgery 4/16/08
 MRI on 4/24/08 clear no suggestion of lymph node   involvement.
 4/24/08 -Started on Lupron and Casodex preparing for HBRT and IMRT in late July.  This treatment will not preclude me from surgery if I change my mind.
Decide to have DaVinci surgery after another consult with surgeon.
6/19/08- DaVinci surgery at University of Washington.
6/25/08- Path report, clear margins, no noted extension
9/12/08- PSA <0.02 

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