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Anyone in a PCa support group (or have been?) Helpful?

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Posted 12/30/2018 4:01 PM (GMT 0)
Do any of you participate (or have participated) in a PCa support group, either occasionally or regularly? If so, was it/has it been helpful to you?

I confess I myself have not, but have wondered at times if I have been missing something, and have even wondered a couple of times if I have perhaps been remiss in not taking part in one. Assuming, of course, that I would have anything to contribute.

There is one such group locally where I am, but, again, I only know of it, having made no contact with it. But a recent article about the group in the local newspaper certainly got my attention, and reading about it has been my motivation for this thread.

I can honestly say that making the time for such a group would be a factor in my own decision, however, and, again honestly, I don't know if I would really have all that much to offer.

But perhaps if some of you who do have experience with a PCa support group would like to comment on how it went (or is going) for you, your thoughts might serve as useful input on making the decision whether or not to pursue this as a personal activity.

So, has anyone ever tried out a PCa support group? How did it go, and what did you get out of it? Would you recommend it for others?
Posted 12/30/2018 6:02 PM (GMT 0)
I attend one in Florida hospital and on in Connecticut depending on time of year. I find them very helpful.
Posted 12/30/2018 9:13 PM (GMT 0)
I usually attend one near Chicago. Some of the presentations are interesting, but most are aimed at the recently diagnosed, or at those fighting recurring disease. Really isn't much they can offer for those of us who have had primary treatment and are just monitoring things for now.

Where the group is valuable, I think, is when a newly diagnosed man attends. We can then try to counsel him one-on-one that, depending upon his pathology, he may have the luxury of time and options. So many men come to their first meeting, diagnosed with G6 PCa, and with their surgery dates already set.

I do find that most of the long-term members are out of touch with the treatment options available to the new patients, but that is understandable. The cross-section of members probably helps, too.

My particular group has a separate sub-group of patients fighting metastatic cancer. They have separate presentations focused on their needs, then they join the main group later in the evening.

At first, when I was learning about treatment options and trying to learn how to decide, the group filled a major void in my life. Now, 2 years later, I try to give back as I can. The fact that I went with SBRT opens the eyes of many men, as most RO's only mention it in passing (unless they can offer it themselves).
Posted 12/30/2018 9:17 PM (GMT 0)
I haven't been in a formal one but I meet up with some guys at a local brewery weekly. We know each other through other connections but it turns out three of us have no prostate.
Posted 12/30/2018 9:36 PM (GMT 0)
I go to one the last Monday of every month. They have had guest speakers (MO, RO etc ) explaining what they do. I find that I have more knowledge than most b/c of this forum and others (e.g the one where he who shall not be named hangs out). Usually they go around the room & everyone talks about their situation. If someone is new we take the time to educate. I find it helpful & believe I am helpful to others. Oh, I almost forgot, they have chocolate chip cookies.
Posted 12/30/2018 10:09 PM (GMT 0)

GoBucks said...
I go to one the last Monday of every month. Oh, I almost forgot, they have chocolate chip cookies.

The healthy kind, I assume..

PS: This forum really is a (virtual) support group.

Post Edited (Sr Sailor) : 12/30/2018 8:19:07 PM (GMT-7)

Posted 12/30/2018 10:19 PM (GMT 0)

Paxton said...
I usually attend one near Chicago. Some of the presentations are interesting, but most are aimed at the recently diagnosed, or at those fighting recurring disease. Really isn't much they can offer for those of us who have had primary treatment and are just monitoring things for now.

Where the group is valuable, I think, is when a newly diagnosed man attends. We can then try to counsel him one-on-one that, depending upon his pathology, he may have the luxury of time and options. So many men come to their first meeting, diagnosed with G6 PCa, and with their surgery dates already set.

I do find that most of the long-term members are out of touch with the treatment options available to the new patients, but that is understandable. The cross-section of members probably helps, too.

My particular group has a separate sub-group of patients fighting metastatic cancer. They have separate presentations focused on their needs, then they join the main group later in the evening.

At first, when I was learning about treatment options and trying to learn how to decide, the group filled a major void in my life. Now, 2 years later, I try to give back as I can. The fact that I went with SBRT opens the eyes of many men, as most RO's only mention it in passing (unless they can offer it themselves).

the therapeutic value of one cancer survivor helping another.
Posted 12/31/2018 2:55 AM (GMT 0)
I attended one before surgery. It was depressing. There was a man there wearing diapers who was 75 years old. His cancer wasn’t agresssive. They operated on him anyway. And there ya are. One day he’s playing golf and the next he’s incontinent. His surgery had been a year back.

The nurse for the uro group that sponsors the group is in charge of the discussion. Kinda hard to speak freely when it’s the doctors nurses who’re doin’ the meetings.

Anyway, I haven’t been back. I’ve thought about givin’ it another go tho. I’ve also thought a cancer (in general) group may be more beneficial.
Posted 12/31/2018 11:44 AM (GMT 0)
Have not been to a group..
I consider HW as my group..
Posted 12/31/2018 1:44 PM (GMT 0)
"Have not been to a group..
I consider HW as my group."

THERE we go!.
Posted 12/31/2018 2:47 PM (GMT 0)
I have been in a local USToo group for years. It was helpful when I was diagnosed and shortly after. By the two year mark I had learned enough from members and the internet and my experience to be of a bit of help to newly diagnosed. I still attend mostly to set people straight who have been been provided with mythology, antique science, false knowledge. I am careful to ask "what does your doctor advise". No one should follow the advice because I give it.
Favorite experience: Men who say they have prostrate cancer.
Posted 12/31/2018 2:58 PM (GMT 0)

MG0351 said...
Have not been to a group..
I consider HW as my group..

+1 -- me too
Posted 12/31/2018 5:35 PM (GMT 0)
I tried the only one I could find locally. It was at Cleveland Clinic, only allowed speakers from that facility, and was just a marketing tool. Unworthy of them, IMHO.

Most disappointing....no chocolate chip cookies. ;)
Posted 12/31/2018 7:00 PM (GMT 0)

garyi said...
I tried the only one I could find locally. It was at Cleveland Clinic, only allowed speakers from that facility, and was just a marketing tool. Unworthy of them, IMHO.

I find that most disappointing, but not surprising. CCF is highly regarded among my heart surgery community, for the most difficult procedures.

OTOH, the support group I mentioned is actually the second one I tried. Both are UsToo groups, in two different suburbs. The one I attend holds its meetings at a church facility. It seems pretty independent and objective. The other group holds its meetings in a hospital conference center. Most, if not all, of their presenters are hospital staffers and department heads. I stopped attending that group for two reasons. First, it is primarily attended by men who are much older than I (I'm 71, most there in their mid-90's). Second, when their staff RO spoke about "The Newest Advances in Radiation Therapy for PCa" last year, he clearly stated that SBRT is still experimental and that there are no long-term results on which to base a choice. I have learned otherwise here, and by my own experience, so I just left the group. No reason to make a scene. . .
Posted 12/31/2018 10:36 PM (GMT 0)
@ Sr Sailor: All chocolate chip cookies are healthy. And so is Handels Ice Cream.
Posted 1/3/2019 5:15 AM (GMT 0)
I have attended 4 each regularly scheduled monthly Prostate Cancer Support Groups in my regional area for about 4 years since my original diagnosis as very metastatic a little over 5 years ago.

The largest group has been facilitated by a dedicated cancer nurse and sponsored between two major hospitals and their cancer centers. They are the most likely to have some guest speakers, and after those presentations, they provide plenty of time for break-out sessions for both the newly diagnosed/beginning men, and the advanced prostate cancer men. Men and some wives/caregivers attend both sessions.

Another group is in a less populated neighboring county, and alternated between two different towns locations each month. This group is smaller, and also provides plenty of time for each and every participant to share his story, and seek/offer mutual support. It has the occasional guest speaker. It is mostly men.

A third group is held monthly at yet another regional hospital. It is lightly facilitated by a member of the oncology staff, and it also offers lots of time for individual information/support sharing.

A fourth group is held monthly in another neighboring county. It is very well facilitated by a former patient and long time facilitator with a close attention to details and excellent social skills.

My wife and I have also attended a more emotional/psychological oriented Cancer Support Group that has met monthly during the 5 years since my original diagnosis with incurable Stage IV PCa, very metastatic, and a PSA of 5,006. This small group has patients/caregivers/survivors with very serious advanced cancers of any type, and the level of support, focus, etc. has always been turned-up several notches higher.

I have found all these groups to be helpful in their own ways. I learned a lot from them, particularly at first. I was able to share a lot with them, as my own experiences unfolded. Would I do it again? Yes, in a heartbeat.

Charles
Posted 1/3/2019 1:57 PM (GMT 0)
I've attended a couple of local groups. One was a general cancer support group through a local hospital, facilitated pretty well by a social worker affiliated with the hospital. Many of the people there had been coming for years, long after their treatments and so on. It was a largish group, usually 20+, and always let the new people speak first. Most of the rest just said, "Still doing fine.", and moved on. They somehow suddenly lurched into a New Age vein, guided meditation, Zen practices and so on, that just wasn't for us. We stopped going, as that wasn't what we were looking for.

Another peer-to-peer PCa support group I went to several times was at a local "Cancer Support Community". They are a global organization, with some 170 locations. Somehow they're associated with "Gilda's Club Worldwide". This PCa support group was kind of frustrating. It was facilitated, but rather loosely. They didn't manage filibusters very well, and it was often difficult to find any value in what was being shared. I liked to share when I could but the format didn't lend itself well to any in-depth discussions. It also became evident that the real reason most were there was to figure out how to finagle access to marijuana. As soon as that topic surfaced, and it always did by somebody, the rest of the discussion was about who to see and how to get approved for marijuana use. Again, not what I was looking for, and stopped going to that one too.

I've never tried an USToo group, but I hear they're pretty good. Maybe it would be worth seeking one of those. But generally, as someone else said, this Healingwell site is my support group!
Posted 1/3/2019 3:46 PM (GMT 0)
I like Vince in Montana's one...a brewery...who needs cookies or a prostate...er...do they have the chocolate IPA'S
Posted 1/3/2019 3:53 PM (GMT 0)
Nope.
This group and two Facebook groups, and HealthUnlocked(prostate cancer) are my support.
Posted 1/3/2019 5:40 PM (GMT 0)
I went to several group meetings sponsored by the local Cancer Community Support Center. It was fine and all, but overall, it was too depressing. The guys closest to my condition ended up deteriorating quickly and it was tough to watch. I would probably be willing to go back, but my real-life poker game meets on the same evening. Better to do the enjoyable things...that is the best use of time to my mind.
Posted 1/3/2019 8:48 PM (GMT 0)
One more vote for this forum is my support group. Though I do occasional one-on-one when a newbie comes to my attention - usually through my wife, who knows everybody, I mean everybody - on both sides of the Atlantic.
Posted 1/3/2019 9:27 PM (GMT 0)
I can see the value of going to a group if it is not too depressing. The people I have talked to at work have no interest in even asking what this PCa thing is all about. I think they are scared to mention it. Even my closest associates. Their eyes glaze over when I mention that I won't be at work for a few weeks.

One of my former co-workers found out and he confided in me about a friend of his who he said was expected to not make it past a certain date, but is still going strong. He was trying to tell me that I have a good chance of living for a while. Not sure he really knows that my situation is not really so serious. Hopefully. :L

Thank God for you guys!
Posted 1/5/2019 2:13 AM (GMT 0)
I've been going to a men only discussion group for 4 years.

I think there may be some value for new guys in hearing my story. I wish I had known about the group when I was making my treatment decisions.

It helps me to have understanding men to talk with about my cancer concerns.

Maybe just my being there to listen to other guy's concerns helps them a little.

It can be a little depressing that some of the men are dealing with more problems than me, but most have positive outlooks that I envy.

Yes, I think it is worth an evening once a month.
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