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Will_10_2010
Posts: 43
Joined: Nov 2010

I will be going to my first support group meeting next month. Has anybody attended this or similar support groups? Just wondering what to expect.

lewvino's picture
lewvino
Posts: 1007
Joined: May 2009

Yes, I've attended one at our local hospital for Prostate cancer patients.

It was held monthly and I attended about 4 or 5 times. I'm sure each group is different.

My experience was that all the men were very friendly, willing to answer questions and share their experiences.

The only thing that I did not like was that all the men were age 65 plus and at the time I was only 54. Also the men seemed reluctant to talk and answer questions on how they were doing on the recovery side with erections after surgery. This might have been since many of the men actually attend the same church and did not want to get to 'personal' on that aspect of recovery.

Good luck to you and let us know how it goes!

Larry age 56,
Davinci surgery
PSA 0
Gleason 3+4 7
All is great on the recovery side following surgery

Swingshiftworker
Posts: 649
Joined: Mar 2010

I attended a PCa "support meeting" once at Kaiser in San Francisco after I was diagnosed.

Didn't find it useful and never went back. I found that the online forums, like this one, were much more helpful.

mrspjd
Posts: 693
Joined: Apr 2010

Hi Will,
Congrats on deciding to attend a face to face PCa networking group. My husband and I began investigating PCa groups soon after his dx. We live near several large cities so we were fortunate to have as many as six different PCa networking groups nearby, all located within convenient driving distances. All had various affiliations or sponsors, i.e., a hospital, a tx center, ACS, US too, etc.

From our experience, most PCa groups seem to be of the networking variety with a focus on PCa education through members sharing & exchanging experiences and knowledge, all under the guidance of a trained facilitator. Hard copies of PCa newsletters, the latest media releases or studies related to PCa, etc. are usually available as handouts. If new attendees wish and are comfortable doing so, they are given the opportunity to share their PCa "story" with the group, encouraged to ask questions, and receive feedback (kind of like the forum, only with the personal element of being face to face). As mentioned in a previous post, sometimes guest speakers from the medical community are scheduled to give an educational presentation to the group on a PCa related subject of interest.

A few PCa groups are more support oriented and are usually connected to the main networking group, sometimes meeting separately, perhaps at a different time or on another day. These grps seem to offer a much needed confidential place for men (only) to vent and, focus more on providing emotional support in coping with the feelings related to a PCa dx and/or tx side effects such as anxiety, anger, fear, change in status, etc.

There were many differences between the networking groups we visited, some much better than others. As indicated in another post, if there are other PCa groups in your area, I would encourage you to "sample" as many groups as possible in order to find the right “fit” for you.

Beside the obvious differences such as meeting days and times (week day vs weekend & day vs evening), a few grps met 1X/mo and others met more frequently. While one group was sparsely attended, another overflowed with attendees. Every group we initially visited seemed to have its own distinct "group personality." While the group members, or attendees, might vary from group to group by age, education, socio-economic background, etc., we found that a skilled/experienced group facilitator could make all the difference in the group’s success and the ease with which it functioned. Since my husband and I are of the belief that PCa is a couple's disease, it was important to us to find a co-ed networking group that welcomed women and wives.

BTW, although we attended a different Kaiser PCa group than Swingshift, our experience was the same--the Kaiser sponsored group was by far the least beneficial of the groups we visited, mostly due to a poorly trained facilitator and, this probably accounted for the very low attendance at that mtg (even though the Kaiser facility was a fairly large "hub" center). In all fairness, Kaiser PCa groups may vary in quality from facility to facility, state to state.

My husband & I are big believers in the face to face group process for personal growth and education by sharing experiences and exchanging info, whether for PCa or other issues that unite group participants. Ultimately, we found a PCa networking group that was a good fit for both of us, with an experienced and dedicated facilitator. The group is not associated with any hospital or treatment center as sometimes those group members have had the limited treatment modalities offered at that facility only and, may be biased toward or unfamiliar with txs not offered at the sponsoring facility.

We have learned a lot from the group process, especially in obtaining valuable PCa info prior to making treatment decisions. It has been a very positive experience and, I recommend it, particularly to those newly diagnosed, but also to anyone at any stage of the PCa journey, men and women alike. PJD and I still attend meetings regularly, continuing to learn and, in return, sharing what we have learned. The bonus is that we've made some good friends along the way.

For anyone interested in locating face to face PCa networking groups, below are a few more links:

man2man - affiliated with the American Cancer Society. ACS is our sponsor for the CSNetwork--this PCa discussion forum. Call for latest updated group info: 1-800-227-2345.
http://www.cancer.org/treatment/supportprogramsservices/man-to-man

TheWellnessCommunity.org - sometimes known as "the cancer support community" To see if there is a center in your area: Google "thewellnesscommunity prostate cancer" along with the name of your city.

us too - click on “chapters and grp support” on left side of page:
http://www.ustoo.org/About_UsTOO.asp

griff 1
Posts: 114
Joined: Jun 2010

i went to one and that was it. mostly older guys and not much info. i guess the classes help some people and hopefully it will you. good luck

hopeful and opt...
Posts: 1353
Joined: Apr 2009

some knowledge based....others emotionally based.....some professionally done and worth going to....others not.......probably a good idea to see if there are other groups in your area so you can select the best ones.........Let me think....contact the American Cancer Society....there are other main groups, but I forget right now.....other posters might let you know.....also try to google for your area.........

Will_10_2010
Posts: 43
Joined: Nov 2010

Thanks for the quick responses. My first meeting is March 1. I'll post an update.

142
Posts: 169
Joined: Dec 2009

USToo also runs support groups in many cities - Look them up at www.ustoo.org. These are a little wider participation, usually at a hospital or community facility for a geographic area. I can see that a group in a church or fraternal organization might be a little restricted.

I find the groups I go to useful. They normally have a speaker, then a split session, with the men and women in different rooms so that each group can deal with more private questions. Some speakers are better than others, but they can't all be great. They are all good sports to come out and spend an evening donating their time.

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