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Posted 10/17/2011 4:59 PM (GMT 0)
Recently I attended a local PCa support group. It was both educational and yet unnerving. The moderators of the group were really upon the subject and were a wealth of information.

The meeting consisted of about 30 people. There were 25 mostly retired men, two elderly ladies and two middle aged ladies. So far so good, right?

Be the newest member of the local I was somewhat embarrassed by the direct interview questions. "How's your contenance? Do you get erections?" and so forth.

Perhaps I am old fashioned but I was not comfortable at all with this approach and especially in front of the ladies. I reluctantly answered as best I could and could not wait for the spotlight to go off.

Is this typical how PCa support meetings are run?

Posted 10/17/2011 5:15 PM (GMT 0)
Seems like a very typical group from my prospective. However the direct questioning seems a little odd. My group lets the newby tell their own story and bring up their issues. It's not uncommon for the group to want to understand what your issues are so that they can help.
Posted 10/17/2011 5:41 PM (GMT 0)
I participate in three groups, sponsored by different organizations. At all of them, there is what would be a really uncomfortable level of questions, but that is a given with PCa. "Too Much Information" is the starting point.

That said, we always divide into men's & women's groups before this type of discussion happens, so the "brutal introduction" is into a male-only group.

In each case new folks are briefly introduced, and can talk as they see fit in the group, then there is a division.

There is a "special case" that has happened a couple of times, being a wife of a PCa patient who can't get the husband to participate. That presents a situation that just has to be dealt with on the fly.

Posted 10/17/2011 5:57 PM (GMT 0)
Sparkit,
Live groups vary from group to group. Some are direct some reserved. I run the 300 members Las Vegas chapter of UsTOO. Here is a typical agenda I start with:

October 2011
Introduction ~ Who is UsTOO, what you should expect from the group
- Education and Support

Treasurers Report (Jerry Meunch)

Prostate Cancer in the News
~ USPSTF Screening recommendation
~ Studies
- Vitamin E ~ The SELECT Trial
~ Events - A trip to Washington DC (Pictures)

UsTOO and the 21C CARE Foundation 1st Annual "This One's for the Boys" Walk
~ We raised over $ 4,500.00 (Thank you All)
- Articles in the news, TV spot for Sara and Lew
- Pictures
- Need help to get the thank you letters out.

New Member Introduction
~ Tell us your story
~ Know your options
- Educate, Educate, Educate!
~ Take your time - Haste makes room for regrettable decisions
~ Never stop learning. Learning begins after you leave the examination room.
~ Use your Peers (online, live, PPML Mailing lists, etc.)
- Use caution.
- There are lots of opinions.
- There is more than one way to do things.
- What's right for some is not necessarily right for you.

Member Updates

This Months Guest Speaker
~ Dr. Oscar Goodman Jr.
- Specialist in advanced treatment of prostate cancer
- Nevada Cancer Institute
- Chemotherapy (Taxotere, Jevtana)

On Deck for November
~ Dr. Nicholas Vogelzang
- Leading Researcher
- Comprehensive Cancer Centers of Nevada, US Oncology
- Clinical Trials ~ Immunotherapies

Be well! Don't leave without letting us know how to contact you

------------------
The section for new members allows for patients to say what they want. Most are willing to share, but we like to give a couple stories first. This helps "break the ice". We have a very nice inclined lecture hall with a ten foot screen. Seats 120. A typical meeting has between 40 and 50.

A good group leader(s) will not dwell on opinion. It is always best that folks speak from their experiences instead of what they didn't like about a therapy they did not choose. We encourage those conversations to be one on one versus a "PCa political" movement. Some men don't like urologists, some don't like the VA, some don't like radiation, some don't like doctors. All will like the group as long as we allow them to talk about their experiences. Being heard is very important in our forum here and in live groups. Some guys share more than others. I let the members dictate what they are willing to talk about. I can speak from the surgery, radiation, and hormonal therapies, and I usually tell my story about ED, incontinence ~ and of course cancer control. Other veteran members do the same. This helps the new folks see that the forum is open to this type of discussion.

Tony
Posted 10/17/2011 6:20 PM (GMT 0)
They never asked these questions at the group I attend. There was an opportunity for everyone to tell their story and share as little or as much as they were comfortable with.
Posted 10/17/2011 11:46 PM (GMT 0)
From the replies I have read so far it appears that the group I joined is a bit over zealous. Their intentions are sincere and straight forward. "You're gonna pee yourself in public, just accept that fact" was just too much, too soon.

Most of the group was senior citizens. I say this with respect as they have seen it all and not much shocks them. I wish there had been an opportunity to bend one of their ears but they were all so eager to get home (9 PM).

I think the best support so far has been this forum. I was fortunate to find it and tune in every day. You guys have taught me so much and I feel less alone in my journey back to health.

Posted 10/18/2011 12:08 AM (GMT 0)
The one here in Durango was pretty tame, we went around the table and each guy gave his story and the "new guys" were able to just talk/vent/ask questions as needed.

Pretty cool overall, I got to hear from a guy who went straight to HT and was still doing well 15 years later. Another guy had radiation 9 years ago and was doing fine PCa wise but was having ongoing bowel issues to date. Others had both types of surgery with varying results.

I'd still be going but it conflicts with my Jeep club meeting and since I've got you guys it's first things first on the local meetings.
Posted 10/18/2011 1:21 AM (GMT 0)
I consider all the brothers and sisters here my support group.

Seriously why would I want to join a local support group when I have this wonderful community?

Bud
Posted 10/18/2011 4:59 AM (GMT 0)
Very surprised women are present-I think this the exception not the rule
Posted 10/18/2011 5:27 AM (GMT 0)
Raddad Said...
"Seriously why would I want to join a local support group when I have this wonderful community?"

Raddad,
Live groups are a different dynamic than online forums. My peer to peer interaction here for five years has been a terrific experience for me, especially early on when I was freshly diagnosed with advanced prostate cancer. However, the live groups can add things that we simply cannot get here ~ professional representation and presentations. I have been in front of some of the best specialists and speakers in the country and I feel I definitely have absorbed more information from the meetings and conferences that I have attended. However I will say the reason I was qualified to run a live support group started right here at HW. I have been a moderator for years here and a serious researcher for my own cause. It resulted in being invited to conferences across the country to talk awareness or to help promote causes related matters. My personal HealingWell experience ~ outstanding, but I can say the same about the live groups. I was asked to author a blog entry for this website and this subject is the very topic I wrote about:

www.healingwell.com/2011/03/coming-together.html

Exra18,
Of my 300 members at the live group, we have about 70 women. In a regular meeting there are about 5 to 10 present either as wives, daughters, loved ones, and also industry representatives. They ladies are just as important there as they are here. Many times doing for their man what he won't do for himself.

Tony
Posted 10/18/2011 3:50 PM (GMT 0)
Tony

I read your blog - very well written. A number of things you said struck me, the bits with the most impact on me and that really speak to exactly what I feel.
>>> Most men are not prepared for what lies ahead but in a short time at HealingWell they will understand that there are peers. In "our" forum we see the newly diagnosed man get educated, the advanced case guy gets information faster than the doctors send it, and we are open 24 hours per day, 365 days per year for business and our members chime in from all over the world.
>>> One thing for sure ~ none of us are alone when in our forum.
>>> Folks I am proud to be working with and I know that they truly do care for one another.

Key phrases
OUR
truly care for one another

I have been part of OUR community for less than 100 days - in that short amount of time I really feel like this is home and that there are friends here that I care about and care about me.

Could I get that with a in person support group that meets once a month? Maybe.
Am I ready to actually attend a in person support group and talk so candidly? - Honestly - I'm really not sure and feel uncomfortable with the idea of doing so.
Will at some time I seek out and join a local support group? Maybe - but for now all of the wonderful people here are my support group.

I thank each and every one of you from the bottom of my heart.

And now - the weather is beautiful and I am heading out to the local RC Plane field to hang out with some of the club members, fly RC planes and enjoy life.

Bud
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