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

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Anyone in a PCa support group (or have been?) Helpful?  
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Posted 12/30/2018 9:01 AM (GMT -7)
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?
Age: 72
Chronic prostatitis (age 60 on)
BPH w/ urinary obstruction, 6/2011
TURP, 7/2011
Ongoing high PSA, 7/2011-12/2011
Biopsy, 12/2011: positive 3/12 (90%, 70%, 5%)
Gleason 6(3+3), T1c
No mets, PCa likely still organ contained
IMRT w/ HT (Lupron), 4/2012-6/2012
PSAs (since post-IMRT): 0.1 or lower
Posted 12/30/2018 11:02 AM (GMT -7)
I attend one in Florida hospital and on in Connecticut depending on time of year. I find them very helpful.
65YO healthy man, PSA 5/17 4.6, MPMRI, 5/17 lesion. 13 core biopsy 3 positive 3+3 and 1 positive in a lesion, All cores less than 30% 8/17 - the second opinion Yale pathology shows a small amount of (3+4) in one core, < 5%, decipher test shows intermediate risks. HDR BT completed 2/6/18. 5/3/18 3 month Post HDR BT PSA 1.3, 6 mo PSA 1.2.
Denis
Posted 12/30/2018 2:13 PM (GMT -7)
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).
Age 68 at Dx
PSA history: 2000-2012 0.9-1.2; 06/2012 started T replacement
2013-2015 3.0-3.3 (new normal); 11/2015 4.6; 05/2016 5.7
Biopsy: 12-core biopsy 07/2016; 3 cores G3+3, 5% or less; 1 core 3+4, 15%; 1 core HGPIN; 2% of gland involved. Summary G3+4.
CyberKnife SBRT with Dr. Hirsch; start 11/15/16, finish 11/23
Posted 12/30/2018 2:17 PM (GMT -7)
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.
Dx Feb 18, 2018, 65 years old, PSA 4.4
3+3 and 4+3
RALP Mar 14, 2018, Cleveland Clinic, Dr. Haber
All clear surgical pathology, 4+3 changed to 3+4
Continence and ED an issue but improving, working with a PT
6 week post-op PSA < 0.01 ng/mL
4-1/2 month post-op PSA < 0.01 ng
7-1/2 month post-op PSA < 0.01 ng
Posted 12/30/2018 2:36 PM (GMT -7)
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.
Dx 5/18/17
11 of 12 cores positive 2 4+4
RALP 7/27/17; 3 pos nodes
No RT b/c scan show multiple bone mets
Cleve Clinic ups to to G9
CClinic MO & my MO agree ADT+Zytiga+Pred
psa post op 0.15 to 0.28
lupron 11/17
psa 12/8/17 0.13;
start zytiga 12/15
psa 12/28 0.03
4/4/18=<0.01
7/3=<0.01
stop Zytiga 7/16 b/c bad liver #'s
9/11/18 restart Zytiga
9/17 down to 1/2 dose
10/5=<0.01
10/30 start 3/4 dose
Posted 12/30/2018 3:09 PM (GMT -7)

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 3:19 PM (GMT -7)

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.
age - 63
12/09 - PSA 6.8
G7 - 3+4 - all 12 cores pos
HT, BT, IGRT
6/18 - 8-year post treatment PSA .1!
PSAs .2, .3, .2, .3, .2, .1, .2, .2, .1, .1, .1, .1, .1

/instagram.com/edraderphotography/
Posted 12/30/2018 7:55 PM (GMT -7)
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.
PSA 2010 thru 2014...4.0 +/- .7
Dx 12/14 @ 56 yo...2 cores G6 <5%, 1 core G6 20%, 1 core HGPIN.
RALP 11/25/15...3+4. 3 to 5 mm surgical margin 15% involvement pT2+
G6 at margin. 5% grade 4 cells. PSA's....2/16-.01...4/16-.00...7/16-.00...10/16-.01...1/17-.01...4/17-.02...7/17-.02
10/17-.02...01/18-.05...03/18-.014...04/18-.02...07/18-.047...10/18-.028
Posted 12/31/2018 4:44 AM (GMT -7)
Have not been to a group..
I consider HW as my group..
DX 7/23/18
Gleason 9
Prostate size 44
stage T2B
No mets.
PSA 5.2
6/16 probes positive 2 maybes.
All on right side 1 on the left
Age 65 with lung problems.
HT 8/22 Eligard 6 month shot
UROLIFT 10/24
11/11/18 IGRT/IMRT
Posted 12/31/2018 6:44 AM (GMT -7)
"Have not been to a group..
I consider HW as my group."

THERE we go!.
Age: 72
Chronic prostatitis (age 60 on)
BPH w/ urinary obstruction, 6/2011
TURP, 7/2011
Ongoing high PSA, 7/2011-12/2011
Biopsy, 12/2011: positive 3/12 (90%, 70%, 5%)
Gleason 6(3+3), T1c
No mets, PCa likely still organ contained
IMRT w/ HT (Lupron), 4/2012-6/2012
PSAs (since post-IMRT): 0.1 or lower
Posted 12/31/2018 7:47 AM (GMT -7)
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 7:58 AM (GMT -7)

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

+1 -- me too
Posted 12/31/2018 10:35 AM (GMT -7)
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. ;)
72years old @ Dx, LUTS for 7 years
Ulcerative Colitis since 1973
TURP 2/16, G3+4 discovered,
4 cores; G 3+3, one G3+4
RALP 7/17 G3+4 Organ confined, but...
<1mm positive margin on Epstein check
pT2c pNO pMn/a
PSA .54 4 months post RR
ercMRI & DCFPyL PET Scan @ NIH/NCI
1" tumor in cavity at apex No mets.
2ADT; IMGT 70.2 GY, over 5/18
PSA <.006 9/18, .054 11/18, .070 12/18
Posted 12/31/2018 12:00 PM (GMT -7)

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. . .
Age 68 at Dx
PSA history: 2000-2012 0.9-1.2; 06/2012 started T replacement
2013-2015 3.0-3.3 (new normal); 11/2015 4.6; 05/2016 5.7
Biopsy: 12-core biopsy 07/2016; 3 cores G3+3, 5% or less; 1 core 3+4, 15%; 1 core HGPIN; 2% of gland involved. Summary G3+4.
CyberKnife SBRT with Dr. Hirsch; start 11/15/16, finish 11/23
Posted 12/31/2018 3:36 PM (GMT -7)
@ Sr Sailor: All chocolate chip cookies are healthy. And so is Handels Ice Cream.
Dx 5/18/17
11 of 12 cores positive 2 4+4
RALP 7/27/17; 3 pos nodes
No RT b/c scan show multiple bone mets
Cleve Clinic ups to to G9
CClinic MO & my MO agree ADT+Zytiga+Pred
psa post op 0.15 to 0.28
lupron 11/17
psa 12/8/17 0.13;
start zytiga 12/15
psa 12/28 0.03
4/4/18=<0.01
7/3=<0.01
stop Zytiga 7/16 b/c bad liver #'s
9/11/18 restart Zytiga
9/17 down to 1/2 dose
10/5=<0.01
10/30 start 3/4 dose
Posted 1/2/2019 10:15 PM (GMT -7)
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
Dx Nov 2013 Metastatic Prostate Cancer at Age 65
Numerous Bone Mets and Lymph Nodes, PSA 5,006
ADT Lupron + Zometa, PSA Nadir 1.0
Resistance after two years.
Short rechallenge Casodex.
Oct 2016 Provenge
Dec 2016 Start Xtandi, PSA 95
Sep 2017 Xtandi PSA Nadir 1.2
Sep 2018 PSA 2.0
Posted 1/3/2019 6:57 AM (GMT -7)
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!
55@Dx on 4/16/13. PSA 5.2, G9(5+4), PNI+, cT3a by MRI.
IGRT - 44 sessions (79.2 Gy, 50.4 Gy pelvic)
ADT2 - Lupron+Casodex (5/13-3/16)

PSA:
8/13-5/16 <0.1 (ADT2)
5/16-3/17 recovering from ADT2
3/17-7/18 ~ 0.6 - 0.8 (no TX)
10/18 = 1.0, 12/18 = 0.9

My Story
Posted 1/3/2019 8:46 AM (GMT -7)
I like Vince in Montana's one...a brewery...who needs cookies or a prostate...er...do they have the chocolate IPA'S
gleason 9 contained stopped psa testing jan 2015 with two consecutive psa's a year apart at 0.15
surgery 10/09 only treatment...eyes wide open...no sand...gonna live til I die...not the reverse forgive my virtues as well as my sins...
Posted 1/3/2019 8:53 AM (GMT -7)
Nope.
This group and two Facebook groups, and HealthUnlocked(prostate cancer) are my support.
My Biopsy
My PSA Curve
Previous PSA
Curve
Treatment Path
My Story
Posted 1/3/2019 10:40 AM (GMT -7)
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.
Dx 03/15 at age 53
PSA 121, Gleason 8, mets in spine, ribs, lymph nodes
04/15 Tx was Lupron and Casodex (control arm of TAK-700 clinical trial)
12/15 PSA nadir .9
09/16 failed first line HT peak PSA 178, new mets in skull and thigh, stopped Casodex and trial, started Zytiga
10/16 spot radiation cleared up spine pain
03/17 Zytiga has PSA down to 1.7
06/17 PSA down to 1.1
Posted 1/3/2019 1:48 PM (GMT -7)
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.
Age 72
-2002-PSA 9.4, 5 of 10 cores 30-50%
-RP 2002 PT3B N0 MX Gleason 3+4 75% left lobe small focus rt lobe
-PSA low 0.01 slow rise to 0.4
-SRT 2010 1 lymph node targeted. Casodex during SRT
-PSA 0.00 thu 2014
-0.02 Oct 14; 0.04 Apr 16; 0.2 Oct 16; 0.51 Jan 17; 2.46 Jan 18, 4.19 Apr 18;
-6.62 May 18 start Firmagon; PSA 0.45 Jun; 0.08 Jul '18; 0.02 Nov '18
Posted 1/3/2019 2:27 PM (GMT -7)
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!
Age of diagnoses: 56
PSA: 8/27/15: 4.6
9/15/15: 5.2
4/18/16: 6.0
7/14/16: 7.2
4/12/17: 8.5
10/04/17: 6.5
2/26/18: 7.6
Biopsy- 10/12/15: 2/12 effected 1-10%; 1-50%, G3+3
Prolaris from above biopsy: 3.7- more aggressive
Biopsy- 9/19/16 MRI Guided 3/16 effected G3+3
3rd Biopsy- 7/19/18 MRI Guided 10/40 effected G3+3
Second opinion from Epstein: G3+4 3/40
Posted 1/4/2019 7:13 PM (GMT -7)
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.
Biopsy: Feb. 2014, PSA 4.4, G 8, T2A, Age 67 (currently 72).
Treatment: 6 month Eligard shot April 2014 followed by
15 beam radiation and 2 HDR brachytherapy treatments.
Final HDR brachytherapy treatment August 2014.
Current: PSA 0.06
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