Survey ~ Online Support Groups...please read!

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Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 6/23/2009 11:33 AM (GMT -6)   
Hey team, good chance to talk about how sites like HW help you...This survey has been approved by our Admin.  I am posting the following on behalf of the researcher named below:

Hi, my name is Marianne Chua and I am a masters student of Health Psychology at the University of Nottingham (in England). I am conducting research into the use of prostate cancer online support forums and I would like to invite you to participate in this study that will potentially be published. My research will differ from existing studies because I aim to look at the use and benefits of prostate cancer support forums purely from the perspective of the forum user, without researcher bias.

Click here/copy and paste into your internet browser to participate:

www.surveymonkey.com/s.aspx?sm=yA1Sr8KRHWDL8wksWihVxQ_3d_3d

It will only take a few minutes of your time as there are only 7 questions, all in an open text box format; This means you can answer as little or as fully as you wish.

Your answers will be anonymous, I will not be asking for any data that will identify you, so please feel free to answer as honestly and openly as you like.

This study has been fully approved by the University's ethics committee. Once you click the above link, it will take you to the online survey, where everything should be self explanatory. However, if you have any questions about the study, please feel free to email me on lwxmxhc@nottingham.ac.uk.

Post Edited (TC-LasVegas) : 6/24/2009 10:24:30 PM (GMT-6)


mjluke
Regular Member


Date Joined Jan 2009
Total Posts : 189
   Posted 6/23/2009 1:56 PM (GMT -6)   
Hey TC:
I could be wrong but I get the impression that all is not what it appears with this survey thing. Once you answer the questions you are invited to join this monkey surveys organization etc. I think there is more to this than helping a Masters student with her thesis- scam might be too strong a  word - but the survey is probably just the hook.
 
63 years old-tumor discovered on digital exam- biopsy December 2008-
4 of 12 samples positive-all on right side
Gleason 3+3=6
PSA-3
Otherwise excellent health.
Brachytherapy- May 19, 2009 -so far, so good.
 
  "There may come a day when the courage of men will fail, but it will not be this day."


geezer99
Veteran Member


Date Joined Apr 2009
Total Posts : 990
   Posted 6/23/2009 2:18 PM (GMT -6)   
Yes -- participate and keep bumping this forward. This is not a scam. The site survey monkey is widely used for all kinds of research, the ads just keep it free.
Age at diagnosis 66, PSA 5.5
Biopsy 12/08 12 cores, 8 positive
Gleason 3 + 4 = 7
CAT scan 1/09 negative, Bone scan 1/09 negative

Robotic surgery 03/03/09 Catheter Removed 03/08/09
Post surgical pathology report. Lymph nodes negative, Seminal vesicles negative
Surgical margins positive, Capsular penetration extensive Gleason 4 + 3 = 7
At 6 weeks: 1 pad/day, 1 pad/night -- mostly dry at night.

Post Edited (geezer99) : 6/23/2009 1:23:26 PM (GMT-6)


Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 6/23/2009 4:23 PM (GMT -6)   
MJ,
MonkeySurveys is used by Universities here and abroad. Yea that is a pitch at the end, but you have no need to comply it. I have seen this in other surveys by approved petitioners, and the study is real. You won't be solicited. I am not sure how it works but I believe that the Survey engine is free to the polsters, and they push the ad at the end is the agreement. Regardless, this is an approved survey at HW.

Tony
 Age 46 (44 when Dx)
Pre-op PSA was 19.8 : Surgery at The City of Hope on February 16, 2007
Geason 4+3=7, Stage pT3b, N0, Mx
Positive Margins (PM), Extra Prostatic Extension (EPE) : Bilateral Seminal vesicle invasion (SVI)
HT began in May, '07 with Lupron and Casodex 50mg (2 Year ADT)
IMRT radiation for 38 Treatments ending August 3, '07
Current PSA (May 11, 2009): <0.1
 
My Journal is at Tony's Blog  
 
STAY POSITIVE!


lwxmxhc
New Member


Date Joined Jun 2009
Total Posts : 1
   Posted 6/23/2009 6:26 PM (GMT -6)   
Hi,
I'd just like to clear up that surveymonkey.com is a website academic researchers use to conduct online surveys and interviews. I don't control any ads at the end, but since I registered to conduct my research I haven't had any pop ups.
I also wanted to introduce myself as the researcher, so you know I do exist!
Thank you to everyone who took the time to participate in my study, if you are interested in receiving an emailed copy of the executive summary of the study results when I have finished my analysis, please feel free to send me an email at lwxmxhc@nottingham.ac.uk.
Thanks again,
Marianne Chua

Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 6/23/2009 7:08 PM (GMT -6)   
Thank you, Marianne,
And also thanks to Mike Scott for forwarding the survey to me. We are glad to participate. HealingWell has been a true blessing to so many affected by prostate cancer including myself. When I received the information from Mike, it was without hesitation to ask our site owner for consent to post your survey. Our owner, Mr. Peter Waite, would prefer to talk to such researchers directly, but he granted my request to post the survey. I wish you the very best in your research.

Tony Crispino
HealingWell Forum Moderator - Prostate Cancer
Regional Representitive - Prostate Cancer International


 Age 46 (44 when Dx)
Pre-op PSA was 19.8 : Surgery at The City of Hope on February 16, 2007
Geason 4+3=7, Stage pT3b, N0, Mx
Positive Margins (PM), Extra Prostatic Extension (EPE) : Bilateral Seminal vesicle invasion (SVI)
HT began in May, '07 with Lupron and Casodex 50mg (2 Year ADT)
IMRT radiation for 38 Treatments ending August 3, '07
Current PSA (May 11, 2009): <0.1
 
My Journal is at Tony's Blog  
 
STAY POSITIVE!


Piano
Veteran Member


Date Joined Apr 2008
Total Posts : 847
   Posted 6/24/2009 12:46 AM (GMT -6)   
I seldom take part in surveys, but I made an exception for this one. The questions are straightforward and the Web Monkey ad at the end was not an issue for me.

Marianne -- I hope it works out well and you get lots of good responses.
Pre-op:
Age 63 at diagnosis, now 64.
No symptoms; PSA 5.7; Gleason 4+5=9; cancer in 4 of 12 cores.
Operation:
Non-nerve sparing RRP on 7 March 2008.
Two nights in hospital; catheter out after 7 days.
Post-op:
Continent; no pads needed from the get-go.
Pathology showed organ confined and negative margins. Gleason downgraded to 4+4=8.
PSAs:
6-week : <0.05
7-month: <0.05
13-month: 0.07 (start of a trend?)
ED:
After a learning curve, Bimix injections (0.2ml) are working well. VED also works but we find it inferior to Bimix.


jrponalameda
Regular Member


Date Joined Dec 2007
Total Posts : 56
   Posted 6/24/2009 7:58 AM (GMT -6)   
I put in my two cents worth as well... didn't take very long, the ads aren't all that obtrusive.

Diagnosed Sep 2007 Age 54 Gleason 6 (3+3)
DaVinci Surgery 11/8/07 University of Minnesota
2/22/08, 8/15/08, 5/15/09 PSA Undetectable


geezer99
Veteran Member


Date Joined Apr 2009
Total Posts : 990
   Posted 6/24/2009 9:05 PM (GMT -6)   
bump. This is the way we help to train the next generation of researchers. Please participate
Age at diagnosis 66, PSA 5.5
Biopsy 12/08 12 cores, 8 positive
Gleason 3 + 4 = 7
CAT scan 1/09 negative, Bone scan 1/09 negative

Robotic surgery 03/03/09 Catheter Removed 03/08/09
Post surgical pathology report. Lymph nodes negative, Seminal vesicles negative
Surgical margins positive, Capsular penetration extensive Gleason 4 + 3 = 7
At 6 weeks: 1 pad/day, 1 pad/night -- mostly dry at night.
At 10 weeks: no pad at night -- slight unpredictable leakage day/1 pad.


Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 6/24/2009 11:26 PM (GMT -6)   
Good bump, Geezer!

I marked this for easy finding as well. I exchanged emails with the researcher and she is grateful for the responses from HW...Great job, guys.

Tony
 Age 46 (44 when Dx)
Pre-op PSA was 19.8 : Surgery at The City of Hope on February 16, 2007
Geason 4+3=7, Stage pT3b, N0, Mx
Positive Margins (PM), Extra Prostatic Extension (EPE) : Bilateral Seminal vesicle invasion (SVI)
HT began in May, '07 with Lupron and Casodex 50mg (2 Year ADT)
IMRT radiation for 38 Treatments ending August 3, '07
Current PSA (May 11, 2009): <0.1
 
My Journal is at Tony's Blog  
 
STAY POSITIVE!


Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 6/27/2009 12:10 AM (GMT -6)   
Bump...
 Age 47 (44 when Dx)
Pre-op PSA was 19.8 : Surgery at The City of Hope on February 16, 2007
Geason 4+3=7, Stage pT3b, N0, Mx
Positive Margins (PM), Extra Prostatic Extension (EPE) : Bilateral Seminal vesicle invasion (SVI)
HT began in May, '07 with Lupron and Casodex 50mg (2 Year ADT)
IMRT radiation for 38 Treatments ending August 3, '07
Current PSA (May 11, 2009): <0.1
 
My Journal is at Tony's Blog  
 
STAY POSITIVE!


IdahoSurvivor
Veteran Member


Date Joined Aug 2007
Total Posts : 1015
   Posted 6/27/2009 2:59 AM (GMT -6)   
Hey Tony,

Took the survey... It was a breeze! tongue

Thanks!

Barry ~ (a.k.a. "Idaho")

 

Da Vinci Surgery July 31, 2007… 54 on surgery day
PSA 4.3  Gleason 3+3=6  T2a  Confined to Prostate

Post-PSAs  09/07  <0.04; 12/07  <0.04; 03/08  <0.04;

06/08  <0.04; 12/08  <0.04;

06/09  =0.062 (doc says don't worry yet)

My web site: http://pca-info.blogspot.com


jacketch
Regular Member


Date Joined Apr 2009
Total Posts : 179
   Posted 6/27/2009 9:27 AM (GMT -6)   
Done but it made my testicles itch.
Age 62, Sex Male
PSA - 3-20-08 2.7; 4-17-08 3.1; 9-18-08 3.6; 1-22-09 3.8
DRE negative
Ultrasound/biopsy 2-12-09, 50cc
4 of 12 samples positive 3+3=6, Right mid-medial <5%, Right mid-lateral 10-20%, Right base medial 10%, Right base lateral 10% adenocarcinoma

open RRP completed 5-5-09
Post surgical pathology report:
Gleason 3+3=6
Lobes involved - left and right
Extraprostatic extension - none
Surgical margins - very small area of margin involvement in right lobe
Seminal vesicles - Free of neoplasm
Vascular/Lymphatic invasion - none
J-P drain, staples and catheter removed on 5-13-09
pT2cpN0MX
No incontinence issues, no ED issues.
Back to work (desk job) in 9 days from surgery.
Surgeon: Dr. Gary B. Bokinsky

6-19-09 PSA<0.1

Remember, don't let the bastages get you down !!!

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