Warning about our privacy

Hana

I googled "Didrocal side effects" and to my horror I came across "Member profile for Hana"

Immediately I recognized  the breastcancer.org link below the name. I clicked on my name and without any password I can get to my personal and private info on this Board. My address, my email address and also my birthday and (!) my avatar.

All without any password.

I deleted my avatar immediately and changed my user name to Melodie. Doesn't do me any good as all other info stays same and I can't delete it. I contacted administrators of our Board but didn't hear anything back yet.

I don't even know where to post this warning and I am sorry I've done it here. I just thought that you should know and everybody will notice it here.

Sorry again. 

Cynthia1962

Hana - only you can access your private info and that's because you're logged on.  If someone else googled the same thing, only the non-private info would show.  I only know because this issue comes up occasionally.

Cynthia 

Hana

Yes, except I do have to log on using the password to accesss my profile info. I was not logged on this site. Strangely when I googled the info on the medication and saw the "Profile of Hana", I clicked on it and immediately was viewing my profile showing my photo, address, my conversation on this board and even my email address - all that withou logging on or needing any password.

TenderIsOurMight

Hana,



Why don't you alert the moderators of your exact computer mode (logged on, not logged on, etc).



This has come up before, and we do try to get them involved. They usually get back to you right away, and review the situation in detail.


Oops! You already did this!

Tender

badboob67

I responded to your other thread. Ladies, please understand that your profile information IS viewable by anyone. I often visit the boards without logging in and there is nothing keeping anyone from viewing your profile information and most recent posts. There is no legitimate reason to allow profiles to be viewable without being a registered user who is logged in.

There are still multiple issues to be addressed such as "notify moderator" of spam or innapropriate posts, the ability to delete sent PMs (I cannot understand why that isn't an option),  and others that have been promised as "coming soon". I know the mods have been busy trying to counter the recent spam attacks. Some of these issues really should have been thought about beforehand.

Diane 

mrsb

Hana  I did a google search under Didrocal side effects and indeed your post was there was able to view your info. I have also found this with other bc support forums. will also alert moderators Mrs B

badboob67

I have been b*tching a lot about how the boards run today. I guess I'm in one of those moods. It does really bother me that yet another aspect of living with cancer has to be a pain in the rear. Honestly, having to go through and edit posts to "delete" them is  ridiculous and also leaves confusing "holes" in conversations that may be helpful to others. (I do appreciate your suggestion, though).

Mods, please understand that you are dealing with a unique subset of people here that absolutely deserve the functionality of a site that will allow them to freely express themselves without fear. Many of us discuss issues with others here that are sensitive enough to  avoid sharing with our families and loved ones. Many of us will die of this disease and fear that our legacy will be statements made here to others in the same situation that might not be understood by those we leave behind. We won't be around to explain what those in our situations already understand.

There have been recent posts from members who have been "outed" by coworkers and stalked by a spouse's ex. There have been ladies whose friends or families violated their privacy and read all their posts here. I do believe it's important to have the messages accessible without having to register. I am sure that there are many who are in desperate need of information that should have access to it.  What SHOULDN'T be accessible are member profiles. I honestly don't think that the user names should be visible until one registers. It would be easy enough to supress IDs when not signed in.

Privacy is a HUGE issue that I feel is not being addressed properly.   

ADK

I have to admit, I went in this morning and deleted all my information because of this post.  Thank you for the heads up. 

bco-admin34667

Everyone, please, please, please read this carefully.  PRIVATE information is NOT shown on Google.  Ever.  PUBLIC information (your username, location, etc.) is shown.  Again, PRIVATE information like your email address are NEVER shown to anyone but you.  You are logged in (whether you know it or not) to your own profile and this is why YOU can see YOUR OWN private information.  Nobody else can.  As a way to confirm this if you have questions in the future, you may click on the "Cached" link on Google at the bottom right of any search result listing.  Clicking this link will take you to the exact version of the page that Google was able to see. As you will see, Google was NOT able to see any email address, address or any other information marked as private in this system.

I know these systems can be confusing and I apologize for any confusion but I assure you that we take privacy VERY seriously and I can assure you that your PRIVATE information is not available to Google or any other user.  Please feel free to follow-up with questions to me by PM or in this thread.

NOTE: as other users have mentioned, PUBLIC information is available to Google and other search engines so please choose usernames and other PUBLIC information carefully. 

badboob67

Yes, I CAN read. My statements were regarding profile information that has no reason to be PUBLIC to unregistered users. I am able to view anyone's information when I am NOT logged in.I am not a computer illiterate fool. I am NOT confused, except as to to level of information you all have decided to allow access to by unregistered users. Most sites like this one do NOT allow access to user profiles to the general UNREGISTERED public.

I suppose I could go delete all information from my profile, but then would have to repeatedly re-state my dx and tx to new REGISTERED users who have questions.

Go visit a YAHOO message board. Some forums are "public" and some forums are "private". Some forums only allow registered users to post, but messages can be read by visitors. Yahoo manages to cloak the identity of registered users until a visitor decides to register and join a forum.

SO, why should UNREGISTERED users be available to see my profile information?  THAT IS THE QUESTION. 

Shirlann

Maybe, BadBoob67, what is happening is this info reveal only occurs on YOUR computer, where you are recognized.   Try to get into this info on someone else's computer.  I think this might be what is going on.  I am not sure, but go to another computer, not linked to yours, and see if this same thing occurs.  Also, I see no need at all to put your address on your profile.  I didn't, and few do.  And your e-mail addy is available to anyone anyway, through various sites on the Internet.

Just an idea.

Shirlann

badboob67

OH GOOD LORD. GO....LOG OUT. CLEAR YOUR CACHE. MAKE SURE THAT YOUR PASSWORD IS NOT STORED BY YOUR COMPUTER OR YOUR BROWSER. Now, go visit a thread and click on user names. You are then taken to the SAME profile page that is visible to registered users when clicking on another user's link. I AM NOT AN IDIOT. As a member of this community, I have no problem with other REGISTERED users being able to view my profile. WHAT I DON'T WANT IS ANYONE WHO VISITS THE SITE WITHOUT REGISTERING BEING ABLE TO VIEW MY PROFILE INFORMATION.

I don't have my address on my profile and deliberately chose a screen name other than my real name. I DO share my diagnosis information with other REGISTERED USERS here because it is helpful when discussing treatments and options.

I did not add a lot of information to my profile for many months after registering because of privacy concerns. I just don't think it is such a MONUMENTAL UNDERTAKING TO MAKE USER PROFILES PRIVATE TO UNREGISTERED USERS. I have had problems with privacy in the past and really struggled with letting my guard down here. I did not sign posts with my first name for several months. There are plenty of whackos, "other" women, and nosey people out there that DO take time to look at public profiles of sites such as this in order to get information about the people they are fixated on. Trust me. I have been the victim of something like that in the past. To be honest, I decided that I'm dying anyway....why bother anymore? If my husband's stalker-y girlfriend wants to know how long it will be before he is "free" to date, well then...WHATEVER. My past experience kept me off the internet for YEARS. It was only when I was dxed with metastatic bc and found myself with no local support options whatsoever that I chose to take the risk here.

So, I have a few options to choose from:

1) remove all my profile information and spend lots of time explaining my dx and tx 

2)leave up the information and accept the fact that it is available to anyone, including those people with less than honorable reasons to view profile information on a breast cancer site

3)shove it and just    quit

I'm leaning toward #3 

sahalie

BCO-ADM and all,

After just reading this thread I just googled my name and one of the entries went to a site called "R-Family vacations".  I saw my name and sure enough one of our members here, Pinkribbonamy has copied and entered one of my posts from BCO over to the "R-Family Vacations" site. 

This infuriates me.  Isn't this against the rules of BCO???????

I wonder how many of our posts here are being taken elsewhere.

This is very disturbing. 

I showed the copied post our Administrators here.   

chemo072

I help run another forum, www.liverfamilies.net, and while there are a few "rooms" in the forum that are public (=searchable by google and other search engines), the far majority are private.  I have to admit that I was shocked when my posts here showed up on google, but, c'est la I guess.  I would just prefer that my posts here be private, for bco members only once they're logged in.  Just my two cents.

And this is a separate question than private profiles mistakenly showing up as public (which is a technical forum scripting/coding problem, I think, if that happened in the liverfamilies forum we'd set our programmers on it right away BTW - testing out how it actually is vs. how it should be etc.  There has to be a reason profiles are showing up unprotected.):

Admins, there must have been a policy decision to make posts public?  What's the history of that decision?  Rationale?  (e.g. public service etc.)

And thank you by the way, for everything you do.  I can't imagine having to moderate a forum this big - is it true there are only 2 people on your team?  For 35,000 users?  At liverfamilies.net we have a 5 person team for approx 1000 users.  Granted we're a talkative bunch, but still. 

ADK

Badboob67,

You contribute so much to these boards.  Please don't go.  It seems to me that we have a communication problem.  As you are aware, with most boards, public means visible only to registered users.  Unfortunately, with these boards, public means truly public which I did not understand until today.  I did log out and searched for my name and I came back to the portion of my profile that was public.  My e-mail address was not there, but I don't feel comfortable having my dx and my birth date available for anyone to see.  So, I deleted it all and it will stay that way.  

Please don't go.  There has been so much bad news as of late, we need to band together more than ever. 

TenderIsOurMight

I agree Anne, we do need to band together more than ever. Badboob67, your lost would be irreplacable, so please don't leave.



Many sisters have left of late, gathering around a site which is probably more personal. They were good sisters, had been here long, and are missed.



I hope too that this ongoing issue of the public "personal" page of our user name be excluded from what browsers such as Google may capture without being registered on the site.



This issue has surfaced several times since early summer. I hope there may be some bc.org administrator serious discussion regarding this exact point.



Thank you bc.org administrators for your ongoing help and attention to our requests.



Tender

sahalie

I just went searching and we all are all over the world wide web.

Thank you Melodie for bringing this to our attention.

BC.O please make our posts here private.   Please.

Bren-2007

I agree with you Tender.  I have deleted as much personal info as I can.  I also deleted my avatar for awhile.  The problem was then nobody knew who I was and my friends thought I was new!  I wish I had realized the privacy issues from the beginning.  I would have approached this much differently.  But now friends and relationships have been made. 

It's very easy to find anyone on the internet.  All you need is a little basic info about a person, even a small fact you wouldn't even think would be important. 

Badboob - your husband is a horse's ass.  Whether or not bco is a protected site (which would be great IMO), the girlfriend would have stalked you until her hands were bleeding on the computer. I know, I had an ex and an ex's girlfriend just like that.

I think you oughta just plant your butt back in front of the computer and keep us company.  We'd miss you.  I know I would, even though you don't really know me.

Bren

Hana

Wow! Thank you all for your response. I still don't feel good about it. Even if I change my name, still, all my posts can be viewed. We talk here freely not only about our pain and worries but also about our families, sex - lots of stuff we sure wouldn't share with public.

 It is not a point that we have something to hide but would you like your neighbour or somebody you are not comfortable sharing your most intimate feeling or concerns? It just took my breath away.

I don't want to leave - I've received so much support during my difficult times from lots of members and of course - who knows - I may need it again. I have hard time to believe that it can't be fixed that only registered members can log in and read our posts.

Thank you.   

Hana

Oh - I forgot - NO - nobody answered to my complain. I emailed to the Support and Melissa and everybody I was able to reach. Not one email from anybody.

sahalie

Melodie. 

I received a speedy PM from the on line BCO Admin. 

Go back up on your thread and click on the post from the BCO Admin and send your information to that person.  Hopefully you will also get a reply.

I'm not here as much as I was due to work and living life but still read for up to date information or help when I can.  Especially prayers for others.  Now with seeing we are all over the Internet without our own permission I too will step back and probably not post as much.  As you probably read in my post above, one of my posts from here was pilfered and posted on some website I had no idea existed.   I think that is against some rule somewhere.  

Thanks again for bringing all of this to our attention.

OneBadBoob

--

I logged out and then clicked on your user name in this thread (I could not see anyone's avitars, incidentally, while I was not logged in.)

All I could see in your profile is that your name is Jerri and you are a teacher.  I guess you could remove that identifying information.  I could not find your e-mail address anywhere.  I have removed my personal info, and change my avitar regularly.

I don't have any answers--I would just hate to see any wonderful ladies leaving here--we learn so much from each other.

While I don't feel "safe" I feel that putting as little to no personal info in my profile as possible and changing my birthdate is a start.  I know I got so so much emotional support from this board and the wonderful folks on it during my three month "lurking" period after my diagnosis--

I think there should be ways to work around this and not throw out the baby with the bath water.  

Jane -
Dx 7/7/2007, IDC, <1cm, Stage I, Grade 3, 0/2 nodes, ER+/PR+, HER2-

Beesie

Anything that we post here on the discussion board is PUBLIC.  It's available to anyone who googles it or who comes to the board, with or without registering.

Anything in our profile under the "My Public Information" tab is PUBLIC, not just to registered users but to any Joe Blow who comes here without registering.  

Anything in your profile under the "My Diagnosis" tab is PUBLIC, if you click that to "show this information in my public profile".

Anything in your profile under "My Private Information" is not available to be seen by anyone but you and, I assume, the administrators. 

I think the problem coming out in this discussion is that for many of us, there is "private" information that we would like to share with other women who are going through BC, but we don't want to share this information with the public at large.  As I understand it, there is no way to do this.  There is no category of data that is available only to registered users.   That's a problem. 

Or maybe it's not.  What we all need to realize is that there is no difference between the wide-open public - those people who come here without registering, simply out of curiosity or by googling - and those who are here as registered users.  We'd like to think that those who register are only women with BC (or a related issue), but the fact is that anyone can register.  There are no restrictions on who can become a member of this board.  And anyone who joins has full privileges (i.e. the ability to post on the discussion board and send PMs) the minute that they join.  Anyone, of any background, can join any conversation thread that they want to join.  So there is no exclusivity to membership.  There is no difference between those who've registered and those who haven't.  Let's face it - we've all seen the "new members" who are here only to promote their own websites, or sell their services, or poke, prod and observe us for research and information purposes, etc....   Thankfully some identify themselves, but I'll bet that there are others here who we think are BC patients but who really aren't.   

Personally, I would feel much safer in a discussion board environment which was restricted to only BC patients and those going through the diagnosis process, but that's not what this board is about.   It's not going to happen.  The fact is that BC.org is a non-profit organization.  This means that their funding comes through donations.  Therefore it is to their benefit that they make this board as open and as broad-in-scope as possible.  That's the reason why our BC.org discussion board entries show up so prominently on Google - it helps draw in users.  That's why the discussion board has expanded to include separate forums for so many different topics - it helps retain a wider range of users.     

That, unfortunately, is the reality of the situation.  This issue has come up before, many times, in fact, and no changes have been made despite the concerns raised by the women who post here.  The reason is because the discussion board that we want is not the discussion board that BC.org is mandated to provide. 

Beesie

,

Were you signed onto BC.org on another internet tab that was still open?  Or had you been signed in and then left the site to go to Google, possibly without signing out first?  I've tried this lots of different ways.  If I open a new internet connection but still have another one running with my BC.org connection, then I can access my private information from Google.  However if I close my connection to BC.org, let's say by shutting down my internet connection and then reopening a new connection, then when I google my screen name, all that I get is my public profile and anything that is available on the public board.   So the public/private split does seem to be working for me. 

snowyday

I just looked up the Enzyme Deficiency5FU and found it on google way back on page 12. Does that mean everything we write on the board is there for just anyone to looku[

bluedahlia

Yep.  It's a public board.  Anyone can access any info on this board.  If it were private, would be a different story.

Hana

One more question - what is the point to register and have password when the whole world can read it without being a member or having password?

I removed my avatar and most info. That way at least nobody sees my face. It was nice to see the faces - I did feel closer knowing that we are "for real". I still didn't hear from moderators even though I posted on their site too. Then again - from what I am reading - they can't do anything about it.

At least now we are aware of all this, and it is our choice what we don't mind to share with public (incl. our neighbours or co-workers, etc.)

No more disclosing our email address in our conversations on this board as I often did, feeling safe hiding behind the passwords.

We need each other, we just have to be cyber-smart. Oh well.....

Hana

pearl49

When I googled myself I found my profile page complete with my email address and every post I've entered, I was surprised to find my profile page on the net with my diagnosis and email address on it I looked up 5FU and Enzyme Deficiency and breastcancer.org and it all came up.  And how do you list under private message does that mean it goes right to another persons email address. I just want to get this right  so I don't post really embarassing stuff for anyone to read.

badboob67

Ok, people. Let's get this straight. Most browsers will store a "cookie" on your system that keeps you signed into this website. Even if you navigate away from the boards, you are STILL SIGNED IN. When find yourself on google, you are seeing PUBLIC posts on the boards and your profile information that is PUBLIC. No one else is able to get into your PM messages or to monkey with your private information. If you have chosen to add your email address to your profile in a space other than where you provided it to breastcancer.org, it is likely being seen by other users when viewing your profile. One "nifty" (nifty=sh#*$ in my book) "feature" added when the boards changed was to list your most recent posts to the boards on the same page where your PUBLIC profile is. I think this is a retarded choice and do not like it in the least. But, WHATEVER YOU POST TO THE BOARDS HERE IS OUT THERE IN CYBERSPACE FOR ALL TO SEE.

That is the nature of the beast. Message boards are NOT "private" unless the owners of the board make it so by requiring user accounts and passwords in order to view the posts. Google cannot index messages on a PRIVATE (password needed for entry) message board. Google DOES index posts on PUBLIC message boards.  Some message boards even require administrator approval before a user can join. Still others route the first several messages posted by new users to an administrator to evaluate before posting to the boards.

THAT IS NOT HOW OUR BOARD WORKS. It is clear by the number of people who "lurk" (view the boards without posting) that many people visit these boards for information without having a user account. I HAVE NO PROBLEM WITH MY PUBLIC MESSAGES BEING POSTED WITHOUT THE EXPECTATION OF PRIVACY. We never know when something we have said in a post will pop up on a google search for someone who desperately needs the information. I AGREE THAT BOARD MESSAGES ARE CAPABLE OF DOING THE MOST GOOD BY REMAINING PUBLIC.

What I DO NOT agree with is allowing every tom-dick-and-harry to view my PUBLIC profile. Many other boards have "public" profiles that are only "public" within the confines of the board membership. THERE IS ABSOLUTELY NO LEGITIMATE REASON TO ALLOW UNREGISTERED USERS TO VIEW OUR PROFILES. I reiterate that many of us have had issues with privacy and stalker-like behavior and BREASTCANCER.ORG'S REFUSAL TO RESPECT THE FACT THAT THIS IS INFORMATION THAT IS OF A SENSITIVE NATURE AND CONTINUING TO ALLOW PUBLIC ACCESS TO THE USER PROFILES ON THIS SITE IS RIDICULOUS. For what reason, other than lack of forethought and a few lines of code, are our profiles viewable to all?

YES, I UNDERSTAND THAT THERE IS NOTHING STOPPING ANYONE WITH ANY LESS THAN HONORABLE REASON FROM SIGNING UP AND BECOMING A REGISTERED USER. The thing about that, though, is that a REGISTERED USER WILL HAVE TRACABLE INFORMATION SUCH AS IP ADDRESS THAT CAN BE USED IF THERE IS ABUSE OF THE BOARDS OR VIOLATION OF THE RULES.

Why bother to give the appearance of privacy by requiring passwords?

I am not sure how some of you are able to access your private messages while believing you are not signed in. MOST BROWSERS STORE PASSWORDS AND "PERSISTENT COOKIES" AS A DEFAULT. YOU WOULD HAVE TO GO INTO YOUR BROWSERS OPTIONS MENU TO MAKE THE CHOICE TO KEEP YOUR BROWSER FROM STORING PASSWORDS. I can assure you that your PRIVATE MESSAGES ARE, INDEED, PRIVATE unless one of the parties chooses to copy/paste or otherwise publicize the message.

It is NEVER A GOOD IDEA TO POST YOUR EMAIL ADDRESS ON A PUBLIC FORUM. Spammers use software to harvest email addresses. Your email address is then sold to spammers all over the globe. Once an email address is compromised in this way, it is nearly impossible to stop the spam. It should go without saying that YOU SHOULD NEVER POST PERSONAL INFORMATION ON A THREAD SUCH AS YOUR PHONE NUMBER, ADDRESS, OR FULL NAME. It amazes me that so many people still do not understand that they should not share this information. EVEN IF YOU BELIEVE YOU "KNOW" SOMEONE BECAUSE YOU HAVE BEEN COMMUNICATING IN A PUBLIC ARENA OR EMAIL, YOU SHOULD PROCEED WITH CAUTION BEFORE SHARING ANY PERSONALLY IDENTIFYING INFORMATION.

Those of us who have had the misfortune of meeting up with some truly off-kilter personalities in real life should be more protective of information. IT IS MUCH EASIER FOR SOMEONE INCLINED TO STALKING TO USE A LITTLE INFORMATION THEY KNOW ABOUT YOU AND FIND YOU ON A SITE LIKE THIS WHEN YOUR PROFILE INFORMATION IS PUBLICLY VIEWABLE AND INDEXED BY GOOGLE. I have had such misfortune. I wrestled with the decision and decided my need for support and information is more important. I JUST DON'T SEE WHY I SHOULD HAVE TO MAKE THE CHOICE WHEN IT IS ABSOLUTELY NOT NECESSARY.

IT IS VERY POSSIBLE TO MAKE USER PROFILES VIEWABLE ONLY TO BOARD MEMBERS AND MANY OF US AGREE THAT IS THE WAY IT SHOULD BE.

Please, people. DON'T KEEP GOOGLING YOURSELF AND RAISING PANIC. If you did not understand that anybody could read your public posts and user profile, I am sorry. That is how this board works. IT IS NOT A BUG OR A FLAW IN THE SYSTEM. IT IS HOW THE PEOPLE WHO RUN THE BOARD WANT IT.

I JUST DON'T UNDERSTAND WHY THEY WANT IT THAT WAY.  Of course, none of us can understand why they are so married to the name COMMUNITY KNOWLEDGE EXCHANGE either. 

TenderIsOurMight

Goggling one's user name, while either logged into bc.org or not, should only bring up your "public information" profile and posts. You elect what you wish on your public information profile and mark save, and this can be edited.



Pearl, perhaps you might repeat your experiment: goggle your user name and see if it goes into your "private information" which is what you suggest in your post above, or your "public member information" as the system is suggested to work. If you have some how placed your email in your "public information" then of course it will show that.



Melodie, the purpose for registering is to accept the contract which excludes via moderating the whole world from being able to post on bc.org without accepting the contract and knowing one may be excluded by posted content, repetitive violations, imo. While all can see, only registered and contract honoring members may post.



Let's all help to figure this out regarding the email thing. And recall that what we place in our "public information" page is just that, public.



Hope this helps,

Tender

pearl49

Thanks again Tender, it was just such a shock to see it all there on Google every single posting I put on this site, even my snotty nose one. I even got right onto the site through that google post.  I changed my name to snowyday on the google profile page last night but then tried to change it back this morning and couldn't so I had to re-register with my other email address.  And your right the support I get on this board is more important to me right now as well.  This site has the best support and knowing I'm not alone in this fight makes a big difference, I can actually sleep at night.  I just wish that this glitch wasn't there. I can't even say it will change how I post because honesty about I feel is so important and if I'm afraid to post questions about things I'm worried about I won't get the answers and support from the women who have been through this. So that's that, I'll just continue as usual and hope it all works out without any people looking into the site to cause problems.