PCa Support Groups

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Hopeful in MD
Regular Member


Date Joined Apr 2009
Total Posts : 66
   Posted 8/10/2009 8:24 PM (GMT -6)   
Hi All,
 
I just returned from a PCa support group session at the Baltimore Washington Medical Center in Glen Burnie, Md., and wanted to recommend finding local support groups.  They can be very helpful, especially if chaired by a urologist or some other knowledgeable person as this one is. In fact, the urologist is himself a prostate cancer survivor - prostatectomy at age 48, 7 or 8 years ago.
 
If there isn't one near you, you might consider starting one up with the support of a local urologist to answer questions and get the ball rolling. 
 
The group I meet with has one hour sessions the second Monday of each month.  The moderator told us that, beginning Jan 2010, we will be having guest speakers.  The goal is to be the best support group in the area.
 
Just a thought and another tool for dealing with the bumps and ruts in the road.
 
Gene in Md 
 
 
Hopeful in MD
Age 70.
Dx Dec 07. PSA 8.4. DRE confirmed tumor. Three of six biopsies positive. Gleason: 6 (3+3).
Seed implants Iodine 125 Jan 08.
PSA's 3.9, 1.7 after implants. 
Rising PSA's: 2.3, 3.4, 3.9, indicating  seed therapy not working. 
April 09 began hormone injection therapy with Lupron 30 MG ea. 4 mos.  Side effects - hot flashes, about 1 an hour, initial severe fatigue. Gone as of mid-July.
Jun 09 - Oncologist DRE negative for nodules - hooray!!!
Aug 09 - PSA 0.5!!!  Lupron is working! 
  
Began seeing psychologist Jun 09 for anxiety and depression.  Anxiety from serious IBS (irritable bowel) probs.  Doctor using hypno-therapy for the IBS - talk therapy for anxiety.   Recommend anyone having difficulty coping with PC or other chronic conditions etc. get professional help. 


Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 8/11/2009 12:17 AM (GMT -6)   
Gene,
US Too International is the largest support group in the US that meets regularly. If a good facilitator is at hand, you will have a regular flow of guest speakers who will present and interact with the membership. My local chapter has the former President and CEO for the organization, but has since retired to facilitating the Las Vegas chapter. If anyone is interested the website is:

www.ustoo.org

There will be a location to select online conversation Email updates (Prostate Pointers) and also find a local chapter near you...This is a great group and I have enjoyed the meetings...(sic)

Tony


 Age 47 (44 when Dx)
Pre-op PSA was 19.8 : Surgery at The City of Hope on February 16, 2007
Geason 4+3=7, Stage pT3b, N0, Mx
Positive Margins (PM), Extra Prostatic Extension (EPE) : Bilateral Seminal vesicle invasion (SVI)
HT began in May, '07 with Lupron and Casodex 50mg (2 Year ADT)
IMRT radiation for 38 Treatments ending August 3, '07
Current PSA (May 11, 2009): <0.1
 
My Journal is at Tony's Blog  
 
STAY POSITIVE!


Hopeful in MD
Regular Member


Date Joined Apr 2009
Total Posts : 66
   Posted 8/11/2009 9:41 PM (GMT -6)   

Thanks, Tony.  I believe that there is an USTOO support group in Washington, DC.  There is also a support group at Johns Hopkins.  There are two members of the group that I meet with who attend those other group meetings, both to acquire info and to learn about their activities.

Gene


Hopeful in MD
Age 70.
Dx Dec 07. PSA 8.4. DRE confirmed tumor. Three of six biopsies positive. Gleason: 6 (3+3).
Seed implants Iodine 125 Jan 08.
PSA's 3.9, 1.7 after implants. 
Rising PSA's: 2.3, 3.4, 3.9, indicating  seed therapy not working. 
April 09 began hormone injection therapy with Lupron 30 MG ea. 4 mos.  Side effects - hot flashes, about 1 an hour, initial severe fatigue. Gone as of mid-July.
Jun 09 - Oncologist DRE negative for nodules - hooray!!!
Aug 09 - PSA 0.5!!!  Lupron is working! 
  
Began seeing psychologist Jun 09 for anxiety and depression.  Anxiety from serious IBS (irritable bowel) probs.  Doctor using hypno-therapy for the IBS - talk therapy for anxiety.   Recommend anyone having difficulty coping with PC or other chronic conditions etc. get professional help. 


goodlife
Veteran Member


Date Joined May 2009
Total Posts : 2692
   Posted 8/11/2009 9:57 PM (GMT -6)   
I personally find the HW forum as good a support group as I can imagine.

The anonymity, the self scheduling, the come as you are ability, and the broader spread to many many readers really has made this a major support to me.

Sitting here at night with my pads, reading the threads, responding to the ones that interest me, and getting up for a glass of ice tea when i want to, has made this almostr an addictive support group for me.

Maybe we could just post the main ideas from the USTOO meetings here. Now if worried guy ever gets his 4 unit VED going, then maybe meetings will be a little more exciting ! (just kidding )
Age 58, PSA 4.47 Biopsy - 2/12 cores , Gleason 4 + 5 = 9
Da Vinci, Cleveland Clinic  4/14/09   Nerves spared
0/23 lymph nodes involved  pT3a NO MX
Catheter and 2 stints in ureters for 2 weeks due to anatomical issues with location of ureters with respect to bladder neck.  Try 3 tubes where no tubes are supposed to be for 2 weeks !
Neg Margins, bladder neck negative
Living the Good Life, cancer free  6 week PSA  <.03
3 month PSA <.01 (different lab)


livinadream
Veteran Member


Date Joined Apr 2008
Total Posts : 1382
   Posted 8/12/2009 6:15 PM (GMT -6)   
In my area there are no support groups. We have a huge medical community, two major hospitals and no support. I am working through my Livin A Dream ministry to start one soon. I believe that we have to meet the emotional and spiritual needs of cancer. I to would encourage people to plug into or create a local support network

peace and love
dale
My PSA at diagnosis was 16.3
age 47 (current)

http://www.caringbridge.org/visit/dalechildress

My gleason score from prostate was 4+5=9 and from the lymph nodes (3 positive) was 4+4=8
I had 44 IMRT's
Casodex
Currently on Lupron
I go to The Cancer Treatment Center of America
Married with two kids
latest PSA 5-27-08 0.11

PSA July 24th, 2008 is 0.04
PSA Dec 16th, 2008 is .016
PSA Mar 30th, 2009 is .02
PSA July 28th 2009 is .01

Testosterone keeps rising, the current number is 156, up from 57 in May

T level dropped to 37 Mar 30th, 2009
cancer in 4 of 6 cores
92%
80%
37%
28%


Cajun Jeff
Veteran Member


Date Joined Mar 2009
Total Posts : 4119
   Posted 8/12/2009 6:46 PM (GMT -6)   
I dont think that is a group here in Baton Rouge. I know that you guys are great support. On so very personal issues you guys have e-maild me and even exchanges phone numbers if discussions were necessary. Thanks to each of you.

Jeff T
Jeff T Age 57
9/08 PSA 5.4, referred to Urologist
9/08 Biopsy: GS 3/4=7
10/08 Nerve sparing open RRP- Path Report: GS 3+3=7 Stg. pT2c, margins clear
3 mts: PSA .05 undetectable
 10th month  PSA <0.01
ED- 5 mg Cialis daily, pump daily, going to try MUSE next


TheoTeacher
Regular Member


Date Joined Jul 2009
Total Posts : 47
   Posted 8/12/2009 10:53 PM (GMT -6)   
Hey Good Life - Great point, the HW Pca forum is a great support group. Come when you can, as often as you want or need it. The discussions are endless and cover every topic. The wisdom is deep and practical and well tried. Ask whatever is on your mind. Dress as you like or come in your pad and undies! Save on fuel! There is something wonderful about a supprt group that meet every Thursday at 9, but the HW Pca forum is always open for business!

Thanks for all your wisdom and support men!
Dad dx at 72 with Pca; RP at 73; Died 11/08 at 88 from Pca met.
3 Uncles have had Pca; 2 deceased from Pca met.
Me: Age 51: Joyfully Married; father of 7!
Routine Physical 11/07 PSA 1.73 DRE normal
Routine Physical 1/09 PSA 2.77 DRE abnormal.
1st Urologist visit 2/09 DRE normal, small - PSA 6.3!
Biopsy 3/17- St. Patty's Day! 3 of 12 cores positive with 5-8% Pca
3+3 Gleason; Visit Johns Hopkins 3/26/09 and decide for surgery.
Lapro RP 6/29/09; discharged 6/30/09
Gleason unchanged 3+3; "larger amount of cancer" than expected.
Organ confined Pca, positive margin as "artifact" of surgery.
All other tissues clear.

"We walk by faith, not by sight."


CPA
Veteran Member


Date Joined Feb 2008
Total Posts : 655
   Posted 8/13/2009 6:44 AM (GMT -6)   
Greetings, everyone.  Like others, I look at Healing Well as my support group and have recommended this site to several people who I have been in contact with who have been diagnosed with prostate cancer.  There are some of us who wouldn't be as open to discussing some of the areas you need to discuss with this disease in an open meeting.  I find that even though we disagree from time to time, I really appreciate the fact that you get everyones real feelings in this forum.  If it were easy and there were straight forward answers, we might not need this forum.  It's not!  Thanks to everyone here for helping me march down the recovery road in a better way than I ever could have without this group.  David

Diagnosed Dec 2007 during annual routine physical at age 55
PSA doubled from previous year from 1.5 to 3.2
12 biopsies - 2 pos; 2 marginal
Gleason 3+3; upgraded to 4+3 post surgery
RRP 4 Feb 08; both nerves spared
Good pathology - no margins - all encapsulated
Catheter out Feb 13 - pad free Feb 16
PSA every 90 days - ZERO's everytime!
Great wife and family who take very good care of me


creed_three
Veteran Member


Date Joined Jan 2007
Total Posts : 762
   Posted 8/13/2009 7:15 AM (GMT -6)   
David (CPA) and all, We too could not face attending support groups in person apart from here, however have recommended this site to 2 others (at work) whose husbands were facing biopsy of prostate, and who asked me for info....Support groups are wonderful for some. However, my hubby was not comfortable about the idea at all, so we skipped them.  But, as we often discuss, this site and all the advice and information from others when needed,  has been invauable to our recovery from Pca, now  fast approaching just short of 3 years since  the diagnosis, which rocked both of us.  Over the last 2 & 1/2 years of vising this site however,  it is also always a relief to know we can always come back anytime should anything unexpected emerge in future. Best wishes to all, Lana & CJ  :-)
Creed_three - Husband 51 yrs (49 years at diagnosis)
PSA (2002) 2.1.  PSA (2006) 3.5.  1 x 5% core of 12 positive at biopsy. Open Radical Prostatectomy with nerve sparing April 2007. Gleeson 3 + 4 = 7.   Undetectable <.1 PSA since, specifically, June 2007-0.01, Oct 2007-0.02, April 2008-0.02: Oct 2008-0.03, Nov, 2008-0.02, April 2009-0.03. 

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