Got some new referrals that I needed

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Purgatory
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Date Joined Oct 2008
Total Posts : 25393
   Posted 4/20/2011 4:14 PM (GMT -6)   
My urologist/surgeon approved two new referrals for me today, as I continue this bizzare PC journey.
 
I am being sent to the Gibbs Cancer Center in Spartanburg, SC, to get set up with a new medical oncologist, now that my SRT has failed.  Don't have a particular doctor picked at this point.  This center is affiliated with MD Anderson.  I do need to find someone to go over my entire case, and give me a fresh look at my situation.
 
Secondly, I have dropped out of the re-hab program at my local hospital.  After spending 5 1/2 months there, 2 times a week, I am in no better condition than when I started.  They would probably be ok for normal physical rehab, i.e. broken bones, back problems, etc, but they are utterly clueless in dealing with a cancer patient with the complications of a fresh stoma and the side effect issues I have from all my ill-fated treatments.
 
I will be going to the Oncology Rehab Center at St. Francis Hospital in Greenville.  This is the same place that I did it 11 years ago.  They have a new center now.  I will, among other things. have access to hydro therapy, a oncology dietician, and all the other icing.  It was a good experience for me before, hoping they can help me get some stamina back after fighting so much pain and fatigue.  Plus I need to be in better shame for whatever lies ahead for me.
 
Probably be another 2 weeks before either of these take place, but at least it was step in the right direction, I think.
 
Not giving up by any means, re-grouping, and re-thinking my current status.
 
I fully expect my PSA at the end of May to take another huge leap upward, but hoping I am wrong of course.
 
David in SC

James C.
Veteran Member


Date Joined Aug 2007
Total Posts : 4463
   Posted 4/20/2011 4:20 PM (GMT -6)   
Never give up, continue to look at options and new opportunities...
James C., Age 64, Kingsport, E. TN
Gonna Make Myself A Better Man tinyurl.com/28e8qcg
4/07: PSA 7.6, 7/07 Biopsy: 3 of 16 PCa, 5% involved, left lobe, GS6
9/07: Nerve Sparing open RP, Path: pT2c, 110 gms., clear except:
Probable microscopic involvement-left apical margin -GS6
3 Years: PSA's .04 each test until 04/10-.06, 09/10-.09, 12/10-.09, 02/11-.08
ED-total-Bimix 30cc

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 4/20/2011 4:28 PM (GMT -6)   
that's my plan, james, just trying to make it literally one day at a time
Age: 58, 56 dx, PSA: 7/07 5.8, 10/08 16.3
3rd Biopsy: 9/08 7 of 7 Positive, 40-90%, Gleason 4+3
open RP: 11/08, on catheters for 101 days
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos margin
Incont & ED: None
Post Surgery PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/8 .04, 8/6 .06, 2/11 1.24, 4/11 3.81
Latest: 6 Corr Surgeries to Bladder Neck, SP Catheter since 10/1/9, SRT 39 Sess/72 gy ended 11/09, 21 Catheters, Ileal Conduit Surgery 9/10

tatt2man
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Date Joined Jan 2010
Total Posts : 2845
   Posted 4/20/2011 4:49 PM (GMT -6)   
David - very pleased to hear some optimism in your postings - focusing on the future and looking forward to new contacts and information- very pleased indeed.

How is the weather in SC? Are you able to get out - even to sit outside and read (no laptop computer) - soak in some of the beauties of the real world and put the digital world aside? ( I watched TRON - LEGACY movie on the flight down to GFMPH).

hugs,
BRONSON

Post Edited (tatt2man) : 4/20/2011 6:45:15 PM (GMT-6)


Ed C. (Old67)
Veteran Member


Date Joined Jan 2009
Total Posts : 2461
   Posted 4/20/2011 7:10 PM (GMT -6)   
David,
I know that you have given your situation a lot of thought and now you are moving on to the next step in your journey. I'm sure you will have a lot of questions and hopefully they will all be answered so you can take the next step, I wish you the best.
Age: 67 at Dx on 12/30/08 PSA 3.8
2 cores out of 12 were positive Gleason (4+4)
Davinci surgery 2/9/09 Gleason 4+4 EPE,
Margins clear, nerve bundles removed
Prostate weighed 57 grams 10-20% involved
all PSA tests since (2, 5, 8, 11, 15, 18, 21, 2 years <.008? ) undetectable
27 months: .005

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 4/20/2011 8:46 PM (GMT -6)   
Just no easy answers ahead, Ed, and not too much in the way of choice. It's like choose your poison in my opinion.

Bronson, 84 F here today, in a warm spell, sorry, I avoid the sun at all costs, that's why I hardly have a wrinkle, lol
Age: 58, 56 dx, PSA: 7/07 5.8, 10/08 16.3
3rd Biopsy: 9/08 7 of 7 Positive, 40-90%, Gleason 4+3
open RP: 11/08, on catheters for 101 days
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos margin
Incont & ED: None
Post Surgery PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/8 .04, 8/6 .06, 2/11 1.24, 4/11 3.81
Latest: 6 Corr Surgeries to Bladder Neck, SP Catheter since 10/1/9, SRT 39 Sess/72 gy ended 11/09, 21 Catheters, Ileal Conduit Surgery 9/10

Old Sailor
Regular Member


Date Joined Aug 2009
Total Posts : 209
   Posted 4/20/2011 9:30 PM (GMT -6)   

David, seems like you have focused on your next steps which is good. Are you familiar with a Dr. Neal Shore of the Carolina Urologic Research center in Myrtle Beach.  He has written an article with Dr. David Crawford,  in Reviews in Urology, Vol 12, no1, 2010 titled "Intermittent Androgen Deprivation Therapy: Redefining the Standard of Care?" It is the most informative and best info I have read in addition to Sturm and Myers. It is a very honest and positive article and I would recommend to anyone who might have HT in their future.

I'm keeping you in my prayers and ask PP that you be at peace and free from worry. Some how I feel you are going to be OK no matter what decisions you make.

The Old Sailor


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 4/20/2011 10:25 PM (GMT -6)   
Sailor,

Thanks for the tip, my friend. Any way this article is avalable on line? No, haven't heard of that doctor in particular. Myrtle Beach is about 5-6 hours east of me.

May PP bless you too. I have quite a private collection of things related to PP. A truly amazing man.

David
Age: 58, 56 dx, PSA: 7/07 5.8, 10/08 16.3
3rd Biopsy: 9/08 7 of 7 Positive, 40-90%, Gleason 4+3
open RP: 11/08, on catheters for 101 days
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos margin
Incont & ED: None
Post Surgery PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/8 .04, 8/6 .06, 2/11 1.24, 4/11 3.81
Latest: 6 Corr Surgeries to Bladder Neck, SP Catheter since 10/1/9, SRT 39 Sess/72 gy ended 11/09, 21 Catheters, Ileal Conduit Surgery 9/10

cooper360
Regular Member


Date Joined Jul 2010
Total Posts : 161
   Posted 4/20/2011 10:54 PM (GMT -6)   
Good Luck !!!! I check in regularly to see how things have been going for you......................You have a lot of people rooting for you........Cooper wink

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 4/20/2011 11:14 PM (GMT -6)   
Thanks, Cooper, my friend.
Age: 58, 56 dx, PSA: 7/07 5.8, 10/08 16.3
3rd Biopsy: 9/08 7 of 7 Positive, 40-90%, Gleason 4+3
open RP: 11/08, on catheters for 101 days
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos margin
Incont & ED: None
Post Surgery PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/8 .04, 8/6 .06, 2/11 1.24, 4/11 3.81
Latest: 6 Corr Surgeries to Bladder Neck, SP Catheter since 10/1/9, SRT 39 Sess/72 gy ended 11/09, 21 Catheters, Ileal Conduit Surgery 9/10

Sephie
Veteran Member


Date Joined Jun 2008
Total Posts : 1804
   Posted 4/21/2011 5:57 AM (GMT -6)   
David, glad to hear that you've taken this important step (hooking up with a medical oncologist). Also glad to hear about your plans to change your physical therapy, and hope that you have success with this new outfit.

As to your PSA in late May - it'll be what it'll be and sadly there isn't a darn thing you (or any of us) can do to change it except hope for a pleasant surprise. John just had his annual physical with his regular MD who always sneaks in a PSA test (even though the urologist did one in March). Anyway, we got a print-out of all of John's blood test results and to my surprise, at the bottom of the list, was the result of a two-decimal place PSA test (the urologist only reports through the standard assay). I am very pleased to announce that John's "official" PSA is shown as 0.02!! Oh no, does this mean another wave of PSA anxiety every April when he has his annual physical?

Back to you, David...you just take care of yourself and remember: one step at a time. You're doing what you need to do and what makes sense for you.

compiler
Veteran Member


Date Joined Nov 2009
Total Posts : 7270
   Posted 4/21/2011 7:13 AM (GMT -6)   
David:
Sounds like definite progress!!
 
This is good to hear.
 
Mel

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 4/21/2011 8:37 AM (GMT -6)   
Sephie, that is wonderful news on John's PSA, hugs to both of you, but not to the Yankees, lol
Age: 58, 56 dx, PSA: 7/07 5.8, 10/08 16.3
3rd Biopsy: 9/08 7 of 7 Positive, 40-90%, Gleason 4+3
open RP: 11/08, on catheters for 101 days
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos margin
Incont & ED: None
Post Surgery PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/8 .04, 8/6 .06, 2/11 1.24, 4/11 3.81
Latest: 6 Corr Surgeries to Bladder Neck, SP Catheter since 10/1/9, SRT 39 Sess/72 gy ended 11/09, 21 Catheters, Ileal Conduit Surgery 9/10

Old Sailor
Regular Member


Date Joined Aug 2009
Total Posts : 209
   Posted 4/21/2011 9:36 AM (GMT -6)   
David, I googled Reviews in Urology, it was easy to find on there in Winter 2010, Volume 12 No. 1.  Take care, Sailor

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 4/21/2011 3:07 PM (GMT -6)   
Thanks, Sailor, I will try to find it
Age: 58, 56 dx, PSA: 7/07 5.8, 10/08 16.3
3rd Biopsy: 9/08 7 of 7 Positive, 40-90%, Gleason 4+3
open RP: 11/08, on catheters for 101 days
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos margin
Incont & ED: None
Post Surgery PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/8 .04, 8/6 .06, 2/11 1.24, 4/11 3.81
Latest: 6 Corr Surgeries to Bladder Neck, SP Catheter since 10/1/9, SRT 39 Sess/72 gy ended 11/09, 21 Catheters, Ileal Conduit Surgery 9/10

knotreel
Veteran Member


Date Joined Jan 2006
Total Posts : 654
   Posted 4/21/2011 4:15 PM (GMT -6)   
David, I like your idea of a fresh look rather than going on to the next step.
Hopefully, you will like what you find there. The rehab change sounds good too. I am glad to see you forcing yourself ahead. I guess it took a while to get a new head of steam build up. Glad to see that.
Ron
06-08 1st biopsy neg psa 4
10-09 psa 5.5 2nd biopsy 1/12 pos. 10%, G(4+3) age 65
12-15-09 RRP Tulane NOLA Dr Lee
Path, 1%, clr marg, no EPE, no SVI, nodes cl, G(4+3)
100% incontinent @ 12 months
ED, pre-op severe, post op total
10/10 Dr Boone, Methodist recomended AUS
AUS/ IPP performed 1/11/11 Methodist Houston
post op psa's 0.04,<0.1,<0.1,<0.01@12 mo.

Skate
Regular Member


Date Joined Oct 2010
Total Posts : 424
   Posted 4/21/2011 4:34 PM (GMT -6)   

David:

Regroup, Recharge and Refresh.  Good luck with this next venture my friend.

Jack


Post Edited (Skate) : 4/21/2011 3:42:04 PM (GMT-6)


Jerry L.
Veteran Member


Date Joined Feb 2010
Total Posts : 3072
   Posted 4/21/2011 4:55 PM (GMT -6)   
Springtime is a good time for fresh starts.

Think of you often,
Jerry
Nov. 2009 Dx at Age 44
Dec. 2009 DaVinci Robotic Surgery
Jan. 2010 T3b, Gleason 9
Feb. 2010 Adjuvant Radiation

PSA History:
-----------------
Nov. 2009 4.30
Feb. 2010 <.05
May 2010 <.05
Aug. 2010 <.05
Nov. 2010 <.05
March, 2011 .09

BillyMac
Veteran Member


Date Joined Feb 2008
Total Posts : 1858
   Posted 4/21/2011 6:15 PM (GMT -6)   
There's nothing quite like having a plan of action David ------- it gives you a feeling of control and that is always good for your emotional well-being. Good luck with the referrals and new docs.
Bill

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 4/21/2011 6:26 PM (GMT -6)   
thanks, ron and jack

thanks, too jerry

billy mac, my good mate, i just dont see it as a feeling of control, i really don't, to me, its the only logical thing to do next, on both fronts, dont really feel any emotion out of it one way or the other

david in sc
Age: 58, 56 dx, PSA: 7/07 5.8, 10/08 16.3
3rd Biopsy: 9/08 7 of 7 Positive, 40-90%, Gleason 4+3
open RP: 11/08, on catheters for 101 days
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos margin
Incont & ED: None
Post Surgery PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/8 .04, 8/6 .06, 2/11 1.24, 4/11 3.81
Latest: 6 Corr Surgeries to Bladder Neck, SP Catheter since 10/1/9, SRT 39 Sess/72 gy ended 11/09, 21 Catheters, Ileal Conduit Surgery 9/10

Sancarlos
Regular Member


Date Joined Feb 2010
Total Posts : 242
   Posted 4/21/2011 6:34 PM (GMT -6)   
David,

Congratulations. I am glad to see that you will soon be under the care on oncologist. I hope you get a good one!!

Let' hope with this progress things will start looking up for you.

Sancarlos
Age 66, PC diagnosed 7/2009 at age 65
Stage: T2c, Gleason: 9 (4 + 5), 6 of 6 cores positive
Bone, CAT and MIR scans negative

Treatment: brachytherapy (103 palladium), 100 gy, 11/2009 + IMRT on Novalis, 45 gy, 3/2010 + ADT3 (Lupron + Casodex+Avodart)

PSA: 7/2009, At time of diagnosis -- 11.9
10/2009 -- 5.0 ; 12/2009 -- 0.56 ; 5/2010 -- 0.15
8/9/2010 -- 0.06 ; 11/2010 -- 0.013; 3/25/2011-- 0.005

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 4/21/2011 9:42 PM (GMT -6)   
Thanks, Sancarlos, just wished I did have a name of a particular doctor in that center to check out.
Age: 58, 56 dx, PSA: 7/07 5.8, 10/08 16.3
3rd Biopsy: 9/08 7 of 7 Positive, 40-90%, Gleason 4+3
open RP: 11/08, on catheters for 101 days
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos margin
Incont & ED: None
Post Surgery PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/8 .04, 8/6 .06, 2/11 1.24, 4/11 3.81
Latest: 6 Corr Surgeries to Bladder Neck, SP Catheter since 10/1/9, SRT 39 Sess/72 gy ended 11/09, 21 Catheters, Ileal Conduit Surgery 9/10

Sleepless09
Veteran Member


Date Joined Jul 2009
Total Posts : 1267
   Posted 4/21/2011 9:51 PM (GMT -6)   
David, I see from this thread that you've got the possibility of HT in your future, and a quick look back shows me that you've had some not so good PSA news while I was off helping Tiger with his putting.

I'm astounded that the radiation hasn't worked, but I know you'll wrestle this to the ground as you have all your other challenges.

However, I also know that the process is painful, disheartening, and can mess with your head space.

As we slide into the Easter Season I'll be putting your name on the church's prayer list and throwing in a few well chosen words of my own. I can't tell you that either the church's prayer list, or my own well chosen words, have a solid track record of success --- or, indeed, anything better than statistical averages --- but I figure, like chicken soup, they can't hurt.

You know from my previous posts that my dad had an orcheictomy ( "I don't know why at my age I should much care," he said, "but it does give you pause when I think about it!) and HT and had an excellent result, and minimal side effects.

You remain, as always, a huge inspiration to me --- not because you're superhuman, but rather because you're not. You hurt, suffer, worry, freak out, just as I do and still you reach down deep, and soldier on. While I don't (yet?) have the PCa issues you've had, I have had some challenges in recent years of a different sort and your example has given me courage, stamina and determination. Thank you.

Sheldon AKA Sleepless
Age 67 in Apil '09 at news of 4 of 12 cores positive T2B and Gleason 3 + 3 and 5% to 25% PSA 1.5
Re-read of slides in June said Gleason 3 + 4 same four cores 5% to 15%
June 29 daVinci prostatectomy, Dr. Eric Estey, at Royal Alexandra Hospital Edmonton one night stay
From "knock out" to wake up in recovery less than two hours.  Actual surgery 70 minutes
Flew home to Winnipeg on July 3 after 5 nights in Ramada Inn  ---  perfect recovery spot!
Catheter out July 9
Final pathology is 3 + 4 Gleason 7, clear margins, clear nodes, T2C, sugeron says report is "excellent"
 
Oct 1st 09 -- dry at night, during day some stress issues.
Oct 31st padless 24/7 
 
First post op PSA Sept 09  less than 0.02
PSA on Oct 23, 2009 less than 0.02
PSA on Jan 8, 2010  less than 0.02
PSA on April 9, 2010 less than 0.02 
PSA on July 9, 2010 (one year) less than 0.02
  

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 4/21/2011 10:48 PM (GMT -6)   
thank you for your kind words, sheldon. appreciate your prayers and thoughts toward me, the feeling is mutual

trust me, i am so far from being a super human its almost funny, i am very much a fraile human being like the rest of us.

yeah, it gets inside my head sometimes, and sometimes i am deeply depressed, but it usually just makes me dig a little deeper inside myself, and grab another spoon of strength and move ahead, no matter how slowly.

i already feel like i am fighting for my life, i never said i would go down easy.

david in sc
Age: 58, 56 dx, PSA: 7/07 5.8, 10/08 16.3
3rd Biopsy: 9/08 7 of 7 Positive, 40-90%, Gleason 4+3
open RP: 11/08, on catheters for 101 days
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos margin
Incont & ED: None
Post Surgery PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/8 .04, 8/6 .06, 2/11 1.24, 4/11 3.81
Latest: 6 Corr Surgeries to Bladder Neck, SP Catheter since 10/1/9, SRT 39 Sess/72 gy ended 11/09, 21 Catheters, Ileal Conduit Surgery 9/10

English Alf
Veteran Member


Date Joined Oct 2009
Total Posts : 2218
   Posted 4/22/2011 4:11 AM (GMT -6)   
David.
I hope the new place and new people will result in a great leap forward for you.
Alf

PS In the mean time enjoy some Easter chocolate on Sunday.
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