public information

harrie · 11-09-2007, 11:22 PM

I am probably the last one to realize this, but ANYTHING you post onto this website has the potential of being viewed publically outside of this online site. The reason I say this is because at least 2 of the messages I posted, showed up in a google search. This public viewing was not only of my message, but all my personal profile that shows up each time I post a message here.
I was a little shocked when I saw that. I'm fine with it, but I think it is good for all to be aware of.
Maryanne

11-10-2007, 05:53 AM

I only became aware of this when my novel was published and along with reviews of novel, etc. my postings on this site were also displayed. I asked that my full name be removed from the list, which Joe did, and I haven't seen any more of my positing, but it's possible if someone searched for something about which I've written on this site (tumor markers) for example that my posts might be displayed. That's also the reason I removed my picture from my posts. I noticed that some women don't use their actual names, even in their signature, which is another way to protect one's privacy.

harrie · 11-10-2007, 12:56 PM

Yes, I think I should also reconsider using my real name and removing my pic also. I think it is nice "seeing" who you are communicating with and I have made some wonderful contacts through this site that have helped me more then anything through my ordeal esp with chemo. I got use to signing off with my real name because it just felt like the right thing to do, but I need to reconsider.
Harrie

Andrea Barnett Budin · 11-10-2007, 01:18 PM

Oh Maryanne! That is initially alarming. Not that I don't stand behind all that I have ever posted, but it was for Sisters and Bros only. What was it you were googling? Just curious... Want to see if I can find myself!

I have a new name picked out. I may consider posting a pic of me in a birkha, w/only my eyes showing, sitting cross legged and totally out of sight. (I once saw a Muslim woman on television who looked exactly like that. She was seated beside her lawyer. She did not speak. She was suing the state of Florida for denying that picture of her as identification on her driver's license! The sight was absurd. Yet real.)
Madam X

harrie · 11-10-2007, 01:41 PM

The two that I know showed up on a search engine would be the thread where this person was looking for an oncologist which I had responded to and the other one was the PMPS (post mastectomy pain syndrome) thread. My friend had googled PMPS and my message on that thread showed up, picture and all. She was so surprised!! Then another time she googled the name of her doctor because she likes to check periodicaly to see if there is anything new under his name and again my entire post came up because I had mentioned his name.
If you would like to ck this out for yourself, go to google, type in POST MASTECTOMY PAIN SYNDROME, then go to page 2 of the listings and you will find it.
Harrie

Debra · 11-10-2007, 01:43 PM

Well I just googled my name (never done that) and didn't have anything from this sight come up----however, a sight with a bodacious (spelling) blonde in some sexy attire popped up with my name in big letters all over the screen!! Apparently some sexy t.v. personality shares my name!

I do know this concern was posted awhile back as well but apparently if your full name is not used, it isn't too big of a problem. Of course I read this post minutes after I posted my picture for the first time!!

PinkGirl · 11-10-2007, 02:16 PM

Madam X

If you Google Andi BB you will get your recipe for cranberry relish.
If you Google Andrea Barnett Budin you will get the "Gaining Control"
thread and the "Vit H, CHO" thread.

There was talk about this awhile back. Some gasped and some already
knew about it.

Andrea Barnett Budin · 11-10-2007, 02:39 PM

Don't know where I was that day, Pinkie, but today -- I am here! AND I AM GASPING!! Too bizarre!

Chelee · 11-10-2007, 03:21 PM

I found out about this over a yr ago when I was googling something. I found many of my posts from the her2 board and the breastcancer.org board. I am uncomfortable with just anyone finding my posts & that is the main reason I will not put up an avatar or use my real name. (Although, I wish that I could.) Its nice to put a name with a face together.

I've had too many problems at the cancer center I go too and didn't like the idea of *them* finding, & seeing what I post...so therefore I remain to all as Chelee. (Of course, not my real name.) As far as I know there is no way around this other then to make a board totally private by invite only. Which would be sad to do because this board is so important to someone that's just been DX her2/neu and is scared to death needing information. There is no other board that comes close to this for her2 as everyone here knows. I can't imagine what would of happened to me had I not ran across this board. (I don't want to even think about it!) You can't get this kind of information anywhere else so for now the only thing to do if you don't want people to run into your posts via google or other search engines is to change your name and remove your avatar.

Chelee

hutchibk · 11-10-2007, 03:23 PM

I worried about this a couple of months ago when many of us got a weird PM from some interloper... I have changed and removed some of my more identifying info and asked Joe at the time to change my user name a little. I am still considering tweaking my user name a little more so that it is less googleable. Not that I am on the lamb or hiding from anyone, or am I? LOL

Sheila · 11-11-2007, 04:43 AM

Harrie
When I googled Sheila I got everything from an Irish Dancer to a Porn Star....when I added Her2 My Name showed up on posts.

PinkGirl · 11-11-2007, 07:21 AM

Brenda, you mentioned that several months ago, some of you received a PM from somewhere. I thought that lurkers could just read the posts. I thought you had to be "signed in" to post PM's and look at the member's list. Yes? No?

Joe · 11-11-2007, 08:23 AM

About a year ago, we did have some problems of members receiving unsolicited emails.

We have since tightened up our registration, so that only registered members have access to our member list.

If any members receive any spam through our personal message feature, please email me and the sender will be deleted and prevented from re-registering.

We have no problem with members not revealing their real name or personal data as long as you use only that name for posting messages.

Through the User CP, any member can hide their email address from others.

Warmest Regards
Joe

weezie1053 · 11-11-2007, 05:54 PM

Appreciate the heads up. I work in a pretty public place. I did google my name with "her2" and "breast cancer" and I got zip. There were several stories related to my employment.

PinkGirl · 11-11-2007, 06:27 PM

Hi Louise
It is our "user names" that are coming up in Google. If you google weezie1053
your her2 posts will come up.

weezie1053 · 11-11-2007, 06:44 PM

I went back and entered my user name, and one of my posts came up.

Thanks again.

janet/FL · 11-11-2007, 07:41 PM

Weezie
I Googled your name, weezie1053 and probably all of your posts showed up. I, too, have worried about this for myself as I use my sign in for most of my posts on the web, and I can Google those from this group quite readily.

http://www.google.com/search?q=weezi...s=0J4&filter=0

madubois63 · 11-12-2007, 08:06 AM

This is the World Wide Web. If someone wanted your information bad enough, they wouldn't need your user name and the goggle search. I use a laptop and have my own home network (wireless router). Sometimes, I can use my neighbors wireless service, and I am just somewhat computer savy. I know people that know how to break in to someone else's computer and plant and copy files. Imagine what someone can do if they really knew what they were doing...? It surprises me that people are so unaware of how much of their personal information is out there. If you are on the internet, you take the chance of sharing all your personal information with the world unless you take SERIOUS precautions to protect yourself. AOL Firewall is just not enough. I have typed in my daughter's and her friends screen names and pieced together the schools they go to, the after school activities they attend and so much information that it scared them silly...

PinkGirl · 11-12-2007, 10:41 AM

Madame Dubois is so right (again) ........we are all out there for the finding, with or without the Her2 site.

The general names like Joe, Sheila, etc. are the best because there will be thousands of other hits, but there can't be many weezie1053's out there.

I googled Brenda H's new name "hutchibk". It was cute.....there were a few of her posts, but google asked me if I meant "hot chick". Maybe they do know who you are Brenda!!! (better than "hatchback")

harrie · 11-12-2007, 11:19 AM

Yes Madame Dubois is right, there is that vulnerability with electronic information. That is the price we pay for access to so much information. I would be feeling very isolated over here where I live if I did not have this access.
I googled "harrie" and there was a monumental amount of listings under that name! My HER2 info was like a tiny needle in a haystack.