In Person Support Groups--How to Find Them?

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AJ 47 (Maryland)
Regular Member


Date Joined Aug 2010
Total Posts : 64
   Posted 4/3/2011 11:15 AM (GMT -6)   
I was wondering how to find local support groups for prostate cancer.  My urologist surprisingly didn't know of any.  Is there a site or organization that I can contact?  I live in Howard County, Maryland.

PSA 1.5 to 3.2 in 11 months. First 12 core biopsy on 2/10 negative in 11, atypical in 1. Second 13 core biopsy on 5/10 at Hopkins positive in 2 with Gleason 3+3 (focal). Robotic "Super VIP" Mani Menon on 8/10. Postoperative Gleason 3+4 (70%/30%). Focal ECE right posteriolateral mid. Neg. margins, lymphs, SV. First PSA 9/14 <.1. 2nd PSA 1/5/11 < .1 Never incontinent +ED. Bi & Trimix work!

142
Forum Moderator


Date Joined Jan 2010
Total Posts : 7078
   Posted 4/3/2011 11:25 AM (GMT -6)   
Go to USToo.org. They have listings of local chapters and meeting / contact information.
 
Also, if you have a local major hospital, check with them to see if they have a support group co-ordinator (not just for PCA, they would likely cover many). At least in my area, the major hospitals have one or more people responsible for support groups in general.

Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 4/3/2011 11:46 AM (GMT -6)   
Like 142 says UsTOO is your best bet.

Some chapters are small and they have more difficulty getting guest speakers, but larger ones usually have strong guest lists. I run the las vegas chapter and we have over 300 members. Our meetings typically between 30 and 50 attending. Our attendance has been up lately because of recent press about a doctor that was reusing tools he wasn't supposed to be reusing in prostate biopsies.

I'm only mentioning as I know you can't attend our meetings but for an example, we have had some very top level presenters this year. Our April meeting will feature a psychosocial oncologist and he will be speaking on issues for couples and also the psychology of diagnosis.

Tony
Advanced Prostate Cancer at age 44 (I am 48 now)
pT3b,N0,Mx (original PSA was 19.8) EPE, PM, SVI. Gleason 4+3=7

Treatments:
Da Vinci Surgery ~ 2/16/2007
Adjuvant Radiation Therapy ~ IMRT Completed 8/07
Adjuvant Hormone Therapy ~ 28 months on Casodex and Lupron.
Undetectable PSA.

Blog: www.caringbridge.org/visit/tonycrispino

Sparrowhawk
Regular Member


Date Joined Mar 2011
Total Posts : 130
   Posted 4/3/2011 1:51 PM (GMT -6)   
Try looking in your local newspaper. Ask your local hospital. Your post here should also help.
31 Jan 11 "Cyst" found on prostrate during Colonoscpy.
28 Feb 11 Biopsy of Prostrate; Malignat Neoplasm of Prostrate.
Rt: 30-40% LT: 5% Gleason Score 3+4=7 Both sides.
PSA: 2.16 "Very Stable over time."
15 Mar 11 Bone and Cat Scans completed- Normal
Large Prostrate: 4.9 x 4.0 cm

MikeS24
Regular Member


Date Joined Oct 2010
Total Posts : 131
   Posted 4/4/2011 5:27 PM (GMT -6)   
AJ 47
I sent an email to you .
Mike S
Dx 56
Biopsy: Gleason 3+3=6, PSA 6.6 One core of 12 with 5% T1c
Surgery: July 2010 J. Hopkins
Path: Gleason 6, Neg Mar, Neg LN, Neg Sem Ves
9/15/10 1st post op PSA <0.1 undetectable
3/11/11 PSA - <0.1
Aug -Sept 2010 - 4-5 pads
Oct 2010 3 pads
Nov 2010 2 pads
Dec - Mar 2011 1 pad all day -slight leaking
ED: slow steady improvements

Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 4/4/2011 6:17 PM (GMT -6)   
You can also contact the ACS as well. They have some groups but they are typically not prostate cancer specific.

Tony
Advanced Prostate Cancer at age 44 (I am 48 now)
pT3b,N0,Mx (original PSA was 19.8) EPE, PM, SVI. Gleason 4+3=7

Treatments:
Da Vinci Surgery ~ 2/16/2007
Adjuvant Radiation Therapy ~ IMRT Completed 8/07
Adjuvant Hormone Therapy ~ 28 months on Casodex and Lupron.
Undetectable PSA.

Blog: www.caringbridge.org/visit/tonycrispino
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