NOW this IS ASTOUNDING!!!!!
 

THIS MEANS I HAVE POSTED ON HER2SUPPORT 1/1000TH OF ALL POSTS ON ALL BREAST CANCER-SPECIFIC SITES WORLDWIDE AND THAT THIS SITE IS ONE OF TENBREAST CANCER SITES WORLDWIDE WITH OVER 100,000 POSTS.

I HOPE WORD OF THIS GETS TO CHRISTINE!



Supportive Care in Cancer
May 2013, Volume 21, Issue 5, pp 1253-1263
Online communities for breast cancer survivors: a review and analysis of their characteristics and levels of use
Jacqueline L. Bender, M. Carolina Jimenez-Marroquin, Lorraine E. Ferris, Joel Katz, Alejandro R. Jadad
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$39.95 / €34.95 / £29.95 *


Abstract
Purpose
Online communities have been heralded as one of the most promising health resources on the Internet. The purpose of this study was to identify the characteristics and levels of use of online communities for breast cancer survivors.
Methods
Using Google, we identified websites with a string of computer-mediated communication terms and individual queries of three to five words of online community terms. This was complemented by a review of website resource lists and personal libraries. Two reviewers independently extracted information on their general characteristics and number of members and message board posts. A coding scheme guided content analysis.
Results
We found 111 websites. Most sites (n = 64, 65.8 %) had a broad focus (e.g., health, cancer, or general). One third (n = 38, 34.2 %) were exclusive to breast cancer and 11 catered to specific disease characteristics. The majority were American (n = 79, 75.2 %), nonprofit (55.0 %), and moderated (69.5 %). Most moderators (85.7 %) were staff or community members; eight sites were moderated by health professionals. Greater than one-third of sites (n = 40, 36 %) were initiated by breast cancer survivors or loved ones. Breast cancer-specific sites contained a total of 4,186,275 posts. One-third (n = 10) contained 93.4 % of posts, displaying over 100,000 posts each. As of April 3, 2012, eight sites were discontinued.
Conclusions
There is a wide range of online communities available for breast cancer survivors with extensive archives of personal illness experiences. Future efforts should focus on identifying the factors that determine their success and effectiveness.

Re: NOW this IS ASTOUNDING!!!!!
 

Congrats to you, Lani!!! and Congrats to us! :-))

Re: NOW this IS ASTOUNDING!!!!!
 

I'm not surprised at all! Congratulations Lani and all the contributors. Truly, I have learned more on this site than any other resource, and have been empowered and enlightened by you all.
Cheers Marie

Re: NOW this IS ASTOUNDING!!!!!
 

I was not trying to toot my own horn, rather put into perspective how this site has become one of the most active sites posting information for others/sharing experiences/ providing support and hope

Joe would be proud of how people have sacrificed to carry on his work and Christine should be dancing a jig, knowing how she inspired it all.

Congratulations to everyone who participates!!

Re: NOW this IS ASTOUNDING!!!!!
 

Lani...
Of course you aren't "tooting your own horn"!!! Anyone who knows you...knows that!

Put PLEASE...allow us...your humble fans...to BLAST AWAY on your behalf! Wow! Amazing! Just stop to calculate the number of people you've touched with all the information you've posted here. Staggering. Thank you! From me...and from all the others we may never even know about!

And...yay for Joe and Christine! Their vision makes us possible!

And, yay for all of us too! For finding HER2 Support...and for being active "posters, lurkers, searchers, readers..." It takes all of us to make this the community it is.

I, for one, can't imagine what this nightmare would have been like for me without this forum and my friends here. It's even possible that without the information I've gleaned from HER2 support...I might not even still be alive and kicking today. Knowing what to ask, when to ask it, on which things I should insist...and equally importantly, which things were absolutely out of the question...all that info and confidence comes from here.

Plenty to celebrate! Thanks for letting us all know!
Denise

Re: NOW this IS ASTOUNDING!!!!!
 

Wow!! I feel honored to be counted as member of this amazing group.

Re: NOW this IS ASTOUNDING!!!!!
 

LANI - WONDERFUL NEWS - but of course... I think if we were to ponder it for just a wee bit, all of us could of guessed! Your ever present posting diligence and Christine and Joe's can-do imagination and all of the Her2 sisters just pole vaulted us to the top!
Never worry - we know you well enough to know that "tooting your own horn" is at the BOTTOM of your list - but posting informative and encouraging research is at the top.
I for one would still be stuck in a morass of despair if it weren't for the information bearers, cheer us up hootin' hollarers, celebrators, chocolate eaters and you-go-girl encouragers! Such great news...XO

Re: NOW this IS ASTOUNDING!!!!!
 

so TRUE WHEN i WAS DX STAGE 4 IN 2006 EVERYTHING OUT THERE WAS PALLIATIVE CARE. then I found this web site, to me there are certain ways I have to handle a new anything. I an a Nurse so you have the nurse side which was staying up all night researching the internet (2006) a lot slower less reporting, the wife side and the mom side. Once I found this site and took others trials and errors, then i was able to take that info and thanks to people like LANI full genuine published data to my Onc, to discuss , different options of care, treatment of cancer and side effects.
God Bless us All, peace and prayers for continued healing, good drugs, doctors, and Insurance companies to cover our stuff!!

Darita Pfeister

Re: NOW this IS ASTOUNDING!!!!!
 

Navigating breast cancer care can be brutal after a diagnosis. The Her2 support website was a god send.

I didn't just want to beat cancer. I wanted to be able to use my experience to improve treatment options for future breast cancer patients. I don't feel my doctors really understood that. They felt I'm just being a difficult patient.

I think the rest of you on the site understand - we are just looking to receive the best possible care that is available at the time of diagnosis. And we want to option to find clinical trials. The best thing about this site is I find others who understand and feel similarly.

Lani, you are forever finding and posting the latest news about breast cancer and frequently interpreting it. Sometime I read it and make fruit salad - comparing apples and oranges. I can say from your postings I have a good education on Her2 breast cancer.

That is a lot of posting!

Re: NOW this IS ASTOUNDING!!!!!
 

Well, I for one did not need any study to tell me this a fantastic bunch of folks! Lani, as always I am grateful to you for your dedication and incite.

You know, we might just all take a bow!

Re: NOW this IS ASTOUNDING!!!!!
 

Tooting my horn for Lani and all of us!
Kudos to this wonderful site!

all the best
caya

Re: NOW this IS ASTOUNDING!!!!!
 

Thanks for everything you do, Lani. This is the best site, IMHO.

Re: NOW this IS ASTOUNDING!!!!!
 

Thank you, Lani. I'm so grateful for your vigilance and diligence. I feel privileged to be, in some sense, in your inner circle.

Re: NOW this IS ASTOUNDING!!!!!
 

Well-deserved recognition! Congratulations and thanks for your hard work. We really appreciate it.

Re: NOW this IS ASTOUNDING!!!!!
 

It fills me with great joy that we have nothing but the best here! Gods blessings to you Lani!