reaching out

Are there many people involved in local or national support groups? If so please share the dynamics.

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My PSA at diagnosis was 16.3

I just support on here.

kw

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    43 at Dx and Surgery

I have attended USTOO meetings and donated to the prostate cancer foundation. But the best outside support I have received came from right here. I like to think my best contributions were here as well. It certainly is great to have this place 24 hours a day.

Tony

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Age 45 (44 when Dx)

Our best support is here. Bob also participates in a "Ride for Dad for Prostate Cancer" motorcycle ride each year.
;o) Linda & Bob

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Bob (62) - Laproscopic Prostate Removal Sept 27, 2006 at age 60.

Hi Linda & Bob-

I am curious about your motorcycle ride.  Is it a local or national event?  What a great idea!!

Hi Doting .

We are in Canada.  The ride originated in the east I believe.  Last year it moved west . . Calgary had theirs and it was a great success with around 150 riders. . . Edmonton did their's next (on father's day) last year (our first one) and had over 400 riders.  More are expected this year.  Of course people sign pledges for donations first.  I cannot remember the total donation amount, but it was a huge success.

If you google "edmonton ride for dad" you will find information and pictures.  I'm sure this is done in other areas.

Side note . . . do you ride??  Bob got his first motor bike at age 60 (two years ago) when we all thought he was going through his second childhood. He loves it . . I'm terrified but suppportive but do not ride myself. . . . look funny on back of a bike with both feet planted firmly on the ground.

Take care!

;o) Linda

thanks to everyone for finding a means of reaching out that fits their needs. It is so important that patients and caregivers find an outlet to express those real human emotions. healing well provides that, as I am sure many local events do. When depression creeps in, please reach out, help is close.

peace and love
Dale

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My PSA at diagnosis was 16.3

Our Us Too meetings usually have a speaker and then the group breaks up into smaller groups broken up by the therapy/path one is interested in. There are groups for surgery, radiation, WW, etc. In each group there are experienced guys to answer the questions of the newbies and their wives.

The speakers have ranged from local docs, dietitians, mood therapists, social workers, etc to Dr. Peter Scardino. I think it's a good mix of professionals and peer to peer discussions (as we have here).

-Les

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1/2005 Dx PSA 26.5 Gleason 7 (4+3) @Age 61
1/2005 Start Casodex and Zoladex
PSA drops to <0.01
7/2005-8/2005 5 weeks of IMRT and then HDR brachy
1/2007 Rad Oncologist orders CT scan of pelvis
because of complaints of pain in both thighs
MRI confirms pain not caused by cancer BUT
1/2007 CT scan of pelvis picks up a nodule at bottom of left lung
5/2007 CT scan of lungs shows 1/2007 nodule has grown and
there are numerous nodules on both lungs.
6/2007 Thoracic surgeon removes wedge of left lung for biopsy
6/2007 Path report says 95% chance of metastatic PCa, but she's
never seen cells like this before.
8/2007 2nd opinion at M.D. Anderson in Houston.
They confirm: mutated PCa, very rare, but seen there 2 or
3 times. Recommendation: have CT scans every 6 weeks
and watch for change. At that point start chemo and will
survive for 22 - 24 months thereafter.
PSA still undetectable, but get Lupron shot to bring T down from 27
2/2008 Trip to Houston – PSA now 0.5 and nodules larger. Lupron shot.

I think I will check into starting an Us Too chapter here in my hometown.

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My PSA at diagnosis was 16.3

Like TC-Las Vegas, I have been involved with the local Us Too group.  The group meets once a month and each meeting features a speaker on a subject related to PCa.  There are also opportunities to mingle and meet others with similar situations and concerns.  Unfortunately, they meet on the third Thursday of each month, when, without fail, my wife is either at school (persuing her master's) or up in Utah on real estate business. So, I'm home in charge of the feeding, homework etc. with my 13-year-old.  So I miss most of the meetings, but help them with publicizing the group's efforts.

how did you find out about your local Us Too group? I sent them an email a couple of weeks ago and have not heard from them yet. They do sound like a good group.
I am working on starting an independent support group if all else fails.

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My PSA at diagnosis was 16.3

When I was diagnosed, I asked my former (repeat former) urologist if there were any support groups and got kind of a non-response.  He said there were some resources out there, but he wouldn't endorse any of them because of some issues he'd had with them.

I attend the UsToo chapter in Danbury, CT. It is called Ann's Place and is a great resource for ALL cancer patients.  about 20 men meet the first Wednesday of the month. One neat aspect is that their partners/wives meet at the same time down the hall. As often happens, I find that what I get is not support for me, per se, but the fact that there are guys there in MUCH worse situations and I can help them - that is what makes all the difference for me. In helping them, I'm the one who is blessed.  It reminds me of how fortunate I am and how grateful i should be for my health. I am doing just fine and don't need it for me anymore, but this perspective keeps me going.

That is my main goal for a support group, to help others, and in turn that helps me. I have been blessed that i have not gone thru the normal phases as of yet. No depression or denial. I know many that are suffering so if I can help them I am happy.

Thanks for all the info
Dale

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My PSA at diagnosis was 16.3