What can 'local' support groups do ?

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JB71
Regular Member


Date Joined Nov 2009
Total Posts : 206
   Posted 11/11/2009 8:08 AM (GMT -6)   

Several weeks ago I looked into possibly joining some sort of

prostate support group and I was delighted to learn that there

is one, right here in my home town. They meet on a second

Tuesday, once a month and I was looking forward to meeting

and joining up with others about our fight against this problem.

 

A Dr. Tim Davies from Hamilton (Ontario) presented a well detailed talk and slide show about incontinence and ED (his wife calls him, the dick doctor’) from which I learned a lot and appreciated the factthat not all is lost, when we experience these symptoms after surgery.

 

But, having said that, I found the rest of this meeting of prostate supporters, most depressing. Even though I’m at age 71, I was, or at least appeared to be the youngest person in attendance. They seemed un-exited about anything and had nothing but gloom on their faces all evening. This was no fun and I wont be going back any time soon.

 

So, my question is:

What could or should I expect from a support group ?

( if anything)

 

Regards, Jerry.

.


Age, only 71.
 
July 2009, PSA 8.7
September GLEASON 8, T2A
 
Bone Scan: Negative
CT Scan scheduled for Dec. 1st. (not ordered
by first urologist)
 
Started Casodex 50mg. on November 6, first pill of 30. Start Lupron on about November 20.
 
Open surgery expected before end of February.
 
Need to get this over with so next year I can 
continue with motorcycling and sailing TOGETHER
with my wife, Debbie.


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 11/11/2009 8:25 AM (GMT -6)   
Jerry, that was exactly how I felt with my one and only attendence at a local prostate cancer survivors meeting in my area. Was like being in a funeral home. I get much better support and friendship right here at HW. At 57, I felt so out of place age wise.

David in SC
Age: 57, 56 dx, PSA: 7/07 5.8, 7/08 12.3, 9/08 14.5, 10/08 16.3
3rd Biopsy: 9/08 - 7/7 Positive, 40-90% Cancer, Gleason 4+3
Open RP: 11/08, Rht nerves saved, 4 days in hospt, on catheters for 63 days, 5th one out 1/09
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos margin
Post Surgery  PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Latest: 7/9 met 2 rad. oncl, 7/9 cath #6 - blockage, 8/9 2nd corr surgery, 8/9 cath #7 out  38 days, 9/9 - met 3rd rad. oncl., mapped  9/9, 10/1 - 3rd corr. surgery - SP cath/hard dialation, 10/5 - began IMRT SRT - 39 sess/72 gys cath #8 33 days, 11/2- SP Cath #9 in place


Steve n Dallas
Veteran Member


Date Joined Mar 2008
Total Posts : 4829
   Posted 11/11/2009 8:49 AM (GMT -6)   
Just like ANY other type of group - the groups and meetings are as fun and exciting etc etc bla bla as the MEMEBERS are.

Age 54   - 5'11"   205lbs
Overall Heath Condition - Good
PSA - July 2007 & Jan 2008 -> 1.3
Biopsy - 03/04/08 -> Gleason 6 
06/25/08 - Da Vinci robotic laparoscopy
05/14/09  - 4th Quarter PSA -> less then .01
Surgeon - Keith A. Waguespack, M.D.


Worried Guy
Veteran Member


Date Joined Jul 2009
Total Posts : 3732
   Posted 11/11/2009 9:14 AM (GMT -6)   
I avoided the local groups. I still have not told coworkers and friends about my PC and I feared that I might see someone I know.
Besides, I can tell you guys things here that I would or could not tell anyone else. You've all been there, done that - or will shortly.
And best of all - I can be getting/giving advice while sitting at my kitchen table wearing only my undies and a pee pad.
Jeff
(Good thing my pc has no webcam.)
DX Age 56. First routine PSA test on April 8th: 17.8.
May PSA: 22.6, 3 weeks later: PSA: 23.2.
Biopsy 6/10/09: 7/12 scores positive, Gleason 6=3+3. Bone scan and C/T scan negative.
RP DaVinci -7/21/2009 @ Univ of Roch Medical Center
Left nerve gone, right partial spared.
Catheter removed - 7/31/2009 Pathology report received:
Gleason 3+4=7 Tumor size: 2.5 x 1.8 cm location: both lobes and apex. No Malignancy in Seminal Vesicle, vasa deferentia, lymph nodes 0/13
Extraprostatic extension present; Perineural invasion: present, extensive
Prostate mass 56 grams. Pathologic Stage: pT3aN0MX
Post Surgery Status:
Potency - 10/31 3 months, Still no activity, nada, zip
Incontinence - 8/20 4 full pads per day
. 9/7 3-4 full pads per day (I'm going to try cutting down on fluids. Bad idea. I know.)
9/17 2 months: Still 3 pads per day.
10/31 14 weeks: Still 3 pads per day. At this rate I'll be fine in 2012.
Post Surgery PSA - 9/3 6 weeks- 0.05, 10/13 3 months- 0.04 undetectable.


lewvino
Regular Member


Date Joined Jul 2009
Total Posts : 384
   Posted 11/11/2009 10:43 AM (GMT -6)   
Jerry,
I found a local prostate group in my home town and was also the youngest in attendance. I'm 55. They were uplighting but not what I was looking for. Very informal and the guys were reluctant to really discuss things. They were a big help for me initially and through my surgery.
This month I decided not to return to the meetings and skipped Monday nights meeting.

I find plenty of support on this forum.

Larry
Age 55 / age at diagnosis 54, PSA 5.1
Robotic surgery 08/12/09 at Vanderbilt, Nashville TN. 
Final Path report:
20% of the prostate Invovled
Tumor graded at T2C
Overall Gleason 3+4 (7)
Lymph Glands Clear, Positive Margin Noted in Right Apex
 
First post Surgery PSA - 0


Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 11/11/2009 12:13 PM (GMT -6)   
I attend the local US Too group here in Vegas. Guess who the youngest is? The group facilitator is retiring from it and I was asked if I was interested in taking over. I have agreed to a committee approach.

Most of the guest speakers talk about local therapies, and some talk about clinical trials, but one thing I think is missing is talking to each other. HW is far better because it is open 24*7*365 and you can get answers in minutes. As a younger attender of the US Too I sometimes feel as though I am a young whip. But reality has it that I learn more here. Once in a while a new member comes to the meeting, but what is the use of another speech on local treatment modalities to a bunch of guys who were already treated? What they need to do is get more face to face discussions going. Support group is the name ~ not seminar.

I would change it drastically.

Tony
Prostate Cancer Forum Co-Moderator

Post Edited (TC-LasVegas) : 11/11/2009 11:21:42 AM (GMT-7)


Hopeful in MD
Regular Member


Date Joined Apr 2009
Total Posts : 66
   Posted 11/11/2009 7:20 PM (GMT -6)   
Hi All,
 
A few comments on support groups.  First of all, like many organizations, their success depends greatly on the leaders and moderator.  I am fortunate to have a support group that meets the 2nd Monday of each month.  The two leaders are PCa survivors and both are very pro-active.  They visit several other local support groups regularly in order to find out what they are doing.  They publicize free PSA screenings and distribute flyers announcing the meeting schedule.
 
Most important, though, is the moderator or expert as I like to think of him.  In my case, he is also a PCa survivor, and a urologist with a lot of experience who tells it like it is.  The most value for me is that I can ask and have asked him questions about my personal experience and concerns.  He has provided what I consider to be excellent guidance.  And not just for me, but for any of the group who want to ask questions.  For example, I asked him about getting tested for testosterone and dihydrotestosterone, pain when urinating, whether I need additional HT meds,  seed implants, radiation proctitis, Flomax, and more.
 
Current plans call for having various professionals make presentations on many of the subjects that concern PCa patients, including the psychological effects on patients and families.  I am ashamed to admit it, but I missed two of the last 3 meetings because I just forgot.  It's my loss.  I listen to the other questions and answers and learn about things that may affect me down the road, and get a good idea of what other men are dealing with.
 
The moderator gave an excellent lecture at one of the meetins on incontinence and the various options for dealing with it, from slings, to artificial sphincters, to pads.
 
So, I think that the support groups are what the leaders, moderators, and members make them.  We need to support them and each other and to be free with our doubts and questions.  One last thing, our support group DOES have women come on occasion and they have questions that are important to them.  PCa is a fact of life as are its effects.  Some men may feel self conscious about asking personal questions, but the meeting is conducted in a frank manner and I don't feel that anyone is afraid to ask about what matters to them.
 
I think the coming year will be an exciting one for the members of the Man to Man support group at the BW Medical Center in Glen Burnie, Md.
 
Gene in Md  
 
 
Age 70.
Dx Dec 07. PSA 8.4. DRE confirmed tumor. Three of six positive. Gleason: 6 (3+3). Seeds Iodine 125 Jan 08. PSA's 3.9, 1.7. Rising PSA's: 2.3, 3.4, 3.9, indicating  seeds not working.  April 09 began HT with Lupron 30 MG ea. 4 mos.  Side effects hot flashes, severe fatigue until mid-July. Jun 09 - Onco DRE negative for nodules - hooray!!! Aug 09 - PSA 0.5!!!  Lupron working! Aug. 21 - 2nd Lupron shot.  Aug. 31 - hyperbaric oxygen for rectal bleeding (radiation proctitis).  40 sessions as of Nov. 9.   Nov. 5 sigmoid exam - gastro "oxygen not working." Hyperbaric doc "they are" confirmed by Nov pics compared to Sep. Will continue treatments up to 60, the max nr for one course of treatments. 


Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 11/11/2009 8:41 PM (GMT -6)   
Well said Gene,
And I don't want to be misunderstood, the team that heads up the Vegas group is very dedicated and wonderful people. But several new members I spoke to, really wanted something more than a presentation on a local therapy. They were scared and wanted the moral support and for someone to tell them that they are not alone and that they will be OK.

We had many meetings like you stated, but we get these things here and at other online websites. To me, I have more from you guys as resources than I could ever have in a once a month meeting. But I don't want to discourage folks from attending those meetings either. I enjoy the friends and I am not afraid to tap the group for volunteers of programs I run in the Vegas area. LOL, for that matter, I am not afraid to tap you guys either and I have in the past.

Both the group meetings and the board here are resources I enjoy. I would just change the format of the live group...


Tony
Prostate Cancer Forum Co-Moderator


Hopeful in MD
Regular Member


Date Joined Apr 2009
Total Posts : 66
   Posted 11/12/2009 9:05 PM (GMT -6)   

Tony,

I agree with you.  This forum is awesome like you and the members on it.  I have learned volumes from the forum about PCa and find many of the posts reassuring and comforting.  The forum does cover more than what can be provided in a support group.  However, I DO like the knowledgeable info from the urologist who leads the support group I attend.

Gene in Md


Age 70.
Dx Dec 07. PSA 8.4. DRE confirmed tumor. Three of six positive. Gleason: 6 (3+3). Seeds Iodine 125 Jan 08. PSA's 3.9, 1.7. Rising PSA's: 2.3, 3.4, 3.9, indicating  seeds not working.  April 09 began HT with Lupron 30 MG ea. 4 mos.  Side effects hot flashes, severe fatigue until mid-July. Jun 09 - Onco DRE negative for nodules - hooray!!! Aug 09 - PSA 0.5!!!  Lupron working! Aug. 21 - 2nd Lupron shot.  Aug. 31 - hyperbaric oxygen for rectal bleeding (radiation proctitis).  40 sessions as of Nov. 9.   Nov. 5 sigmoid exam - gastro "oxygen not working." Hyperbaric doc "they are" confirmed by Nov pics compared to Sep. Will continue treatments up to 60, the max nr for one course of treatments. 


55 and healthy in NJ
Regular Member


Date Joined Apr 2009
Total Posts : 58
   Posted 11/12/2009 9:21 PM (GMT -6)   
I am also the youngest attendee at my local support group (1st Thursday of every month), but most of the regulars are very active and informative. We have a cross section of surgery guys (open and robotic), seed guys, and a number of watchful waiters. The watchful waiters are especially informative and are well-read on all the latest studies regarding vitamins and nutrition focused therapies. Plus there are some who have experienced a recurrence and gone through salvage treatment. Like the others have said, it's all about the group leader and the members. In my area, there is a local support group at each nearby hospital, and they are not that far apart from each other. So my advice would be if your local group is not what you expected, try another one in your area.


Greg

Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 11/13/2009 9:53 AM (GMT -6)   
Well I will have to try to stay away from the urges to make any drastic changes.

I am being considered the front runner to take over facilitating the Las Vegas chapter of UsTOO. My oncologist called me yesterday to tell me that he has contacted them and that I should consider it seriously. He did commit that he would help with providing guest speakers, including himself and his peers. I have been on the fence about it. But the chapter director is retiring, and peace to him, after 15 years heading the group. I have to believe it's meant to be so I am making the plans now to begin in January. I do hope for a committee effort in support as I see that as the only way I can run the meetings, with work and all. Sending out mailers, and arranging speakers is pretty task oriented and time consuming. But the head of the committee that is selecting the new director has promised me that they will help in that regard. I believe that moderating here has been a real help for I would never have been considered for what I consider very important responsibility in the community.

Wish me luck. I can only try and do my sincerest effort to help keep that program running. Sheesh, a busy New Years ahead. I also teach a 24 week (weekly) seminar at my church starting in January...so no rest for the weary...

Tony
Prostate Cancer Forum Co-Moderator


creed_three
Veteran Member


Date Joined Jan 2007
Total Posts : 762
   Posted 11/13/2009 4:28 PM (GMT -6)   
Jerry, We had a bit of a drama with local support groups and it made us retreat somewhat from them..this would be my longest post for a while!

We read the literature of the local support group, got a recommendation from someone, spoke to 2 men on the phone, and also investigated a younger man's (<55 yrs to qualify) phone support group. As the wife of a survivor (and a nurse), I thought it was all good and had potential, UNTIL I spoke to three of the facilitators (My husband left it to me to organise - he was a bit non plussed on it all in the first place). One person (the phone facilitator), did not have cancer and never had, so he and his group was immediately ruled out for that alone. We later got an invitation to participate in a research project about the very group which we did not end up joining, and then 2 futher surveys to evaluate the group we never joined! I kept them to post back one day with a letter of complaint (Haven't done it of course). When I spoke to this phone facilitator (the one without cancer), he told me my hubby would have to join up by phone for a few meetings first, to see if he was a "good fit" for the group. When I asked him what exactly a "good fit" was he said, " Well.. there are several men in the group who could be dying at the moment, who might like to discuss what this is like for them. How would your husband feel about that if it was his first meeting and introduction to these men?" I told him my husband would probably be traumatised and overwhelmed to hear this sort of initial news of his fellow members in a support group, so maybe the "fit" between hubby and his phone group would not match anyway, and the whole idea perhaps NOT be so helpful after all? .... Yes, the approach of moderators and facilitators is interesting, and we can't be around people who are negative - so that option not work for us.

The local support group on the other hand, was a face-to-face group we investigated. It was described as a mixed group - women, men and children (with a few separate meeting times for the men). My hubby too was told he would have been the youngest in the group, and personally I don't know why this was even a factor which had to be pointed out. He already had reasoned out that he would probably be younger than most. As a shy man however, this freaked him out to be singled out.

So we did not join in the end, and then did not discuss it with anyone else for more than 2 years....I am not sure that was a good strategy either, as I have since found quite a few people (on-line) who would now be classified as "our" support group, and also a colleague at work, who now has had the same thing. All in all, we did not seek out any further support groups, but part of that was a 3 year denial that it was happening to us in the first place! However, now it is yesterday, and there do seem to be good groups around, but in my opinion they (support groups) need to be separate for males and partners (not mixed unless it is a social, and not a health information group), and the facilitator absolutely needs to have experienced with the condition, and be a survivor. Some of the groups described here sound great. And, others sound as depressing as we found them to be, and as a result never attended past the initial enquiries. I guess in answer to your question then Jerry (long-winded as it is), shop around a little more than we did, and you may just hit the jackpot with finding a good support group which suits you - either in person, by phone or other technology, or even email...We thought age was a factor but its not - it is the attitude so the mix of age of the group should be irrelevant if that is of any help! Hope it is. cheers & good luck, Lana


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. 


zufus
Veteran Member


Date Joined Dec 2008
Total Posts : 3149
   Posted 11/13/2009 7:07 PM (GMT -6)   
Hey Andrew you were missing a comma in that last thread and a plural....lol....I got the message.  Yeah great group lead by onco-doc whom has guests sometimes like Dr. Bostwick (pathologist); Dr. Mark Moyad (nutrition-health), local docs on various protocols that we can question and answer with. Journal information sometimes handed out, videos, PCa data, nutrition & foods with value, alternative and new drugs and information on them. open forum discussion from patients at any level and more. No agendas pushed or protocols or treatments, unbiased look at everything and patients not discredited for any particular avenue they chose or might choose. Very open to challenge and discuss any and all things on PCa, Andrew can tell you where it meets and when.
 
Been to another group at Beaumont Hospital (good hospital) but didn't pass the unbiased smell test, so didn't go back to that one. They vary and alot depends on moderator(s) and knowledge base  and types of shared information  and such, I would say.
 
 
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