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Veteran Member

Date Joined Nov 2007
Total Posts : 598
   Posted 4/5/2008 8:17 PM (GMT -6)   
I didn't mean to start a new thread - only reply to Livinadream's post about support groups. But once a thread is posted there's not taking it back!
I am a member of the Danbury, CT chapter of USTOO. It is a great organization. The group meets once a month and it has been a real good experience for me. There are several guys fighting PCa with everything they've got. Some guys know they are near the end of that fight. I find it inspiring and very grounding to listen to them talk. I count my blessings every time I leave that group. I would encourage anyone to join a live support group. I find the face to face interaction very healing in many ways. I also refer many guys to this website and its huge library of knowledge.
 The only real reason I chose it over American Cancer Society sponsored groups was its proximity. ACS has great support groups for men all over the country. They also have financial aid for cancer patients and all kinds of help as far as transportation, counseling, etc.  When I win the lottery, I will send both of these groups a big check  -- not to mention Healing Well!

47 at Diagnosis.
Father died of Pca 4/07 at 86.
1/06 PSA 3.15
1/07 PSA 4.6      (Biopsy 3/07 just suspicious)
10/07 PSA 5.06   (Biopsy 11/07  1 of 12 with 8% involvment) (1mm)
Da Vinci surgery Jan 5, '08 at Mt. Sinai Hosp. NYC
Saved both nerve bundles.
Path Report:  Stage T2cNxMx
-Gleason (3+3)6
-totally contained to prostate,
-10% involvement in L & R Mid lobes
PSA 0 at six weeks
Pad free on March 14 - (10 weeks.)
ED - Take 100mg viagra every night.
Totally usable erections at 10 weeks.

Post Edited (Paul1959) : 4/5/2008 7:22:53 PM (GMT-6)

Veteran Member

Date Joined Apr 2008
Total Posts : 1382
   Posted 4/5/2008 8:49 PM (GMT -6)   
thanks for writing. I am going to check out that group. I am in Jackson TN and we do not have much in the way of support groups. I just have the need to reach out to others. I love proclaiming the message of hope.

My PSA at diagnosis was 16.3
age 46 (current)
My gleason score from prostate was 4+5=9 and from the lymph nodes was 4+4=8
I had 44 IMRT's
Currently on Lupron
I go to The Cancer Treatment Center of America
Married with two kids

Tony Crispino
Veteran Member

Date Joined Dec 2006
Total Posts : 8128
   Posted 4/5/2008 8:51 PM (GMT -6)   


Actually if you want to post it there just copy and paste and I will remove it. But. You have also started a great new thread. Nice post Paul. Very valuable that we share our experiences while accepting support from others!

God Bless.


Veteran Member

Date Joined Jun 2005
Total Posts : 528
   Posted 4/5/2008 9:23 PM (GMT -6)   

Us Too - absolutely.

But, as far as The American Cancer Society goes - save your money. They've been in business since about 1913, and have over 2.3 billion dollars in assets. They have all kinds of questionable ties to pharmaceutical companies. One would think with all that money and over all these years, they would have done a lot more to eradicate cancer.

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.

Post Edited (Gordy) : 4/5/2008 8:46:16 PM (GMT-6)

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