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Topic: Privacy compromised

Forum: Advocacy — Join here to discuss issues where we can have a voice!

Posted on: Apr 4, 2012 03:57PM

mumito wrote:

I only recently found out that several of our threads are being highlighted on Facebook.I chose not to join facebook due to privacy issues.I do not want to share my BCO posts with everyone on facebook.Are any of our members upset like me.I even had to change my avatar name.

Dx 4/23/2008, IDC, 5cm, Stage IIB, Grade 3, 2/15 nodes, ER+/PR-, HER2-
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Apr 4, 2012 04:16PM epgnyc wrote:

OMG, I'm horrified!  This is so not right.  I also decided not to join Facebook because of privacy issues and now, to find out that unbeknownst to us, some of our words are being splashed all over the most public of forums is unconscienable.  Isn't there anything that can be done about this?  By the way, Mumito, thanks for alerting us to this.

Dx 5/2002, IDC, 1cm, Stage I, Grade 3, 0/2 nodes, ER-/PR-, HER2- Dx 2/4/2011, IDC, 4cm, Stage IIA, Grade 3, 0/3 nodes, ER-/PR-, HER2-
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Apr 4, 2012 04:23PM Claire_in_Seattle wrote:

I think Mumito that any of us who post have to assume that someone, somewhere could be reading this.  I use Facebook to keep up with friends, but trust me, I watch what I post. 

I had to make another decision like this when I was interviewed by LIVESTRONG two years ago.  However, I thought the message of being fit enough to do a cycling event immediately post radiation was important enough to forego my privacy.

One major factor on the side of retaining your privacy is the volumes of data being generated.  I recently co-wrote a white paper on data mining.  The amount is mind-boggling.  So not a needle in a haystack.....it's a speck of dust in a haystack.

Now, the game is different if the person in the public eye (as the moron who tweeted his privates found out). The rest of us have relatively little to worry about.

That said, I still try to keep things upbeat and interesting. - Claire

Completed all treatment (AC +T, lumpectomy, radiation and 5 years of AIs - anastrazole). Now celebrating every single day for the wonderful life I have been granted. Dx 8/2009, IDC, Left, 2cm, Stage IIB, Grade 3, 1/21 nodes, ER+/PR-, HER2- (FISH)
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Apr 4, 2012 04:24PM Marple wrote:

I'm not very happy about this either.  I know being on the internet in most capacities pretty much puts one 'out there' but FB is not my favourite organization.  (To put it politely.)

mumito, this post might be more noticed at the bottom of the 'Jump to a Forum' tab under 'Comments, Suggestions, Feature Requests.'

Dx 2006, IDC, Stage IIB, Grade 2, 1/14 nodes, ER+/PR+, HER2-
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Apr 4, 2012 04:31PM SpecialK wrote:

Basically everything we post here is available to be seen on the internet, it is out there for public consumption.  That is how I found BCO, I googled questions about my dx and could see all of this conversation without signing in.  Witholding complete names and personal information should be done anyway, if you have personal info to share, send a PM.  I do not use facebook, but how would that be any different from what we already are doing in these forums?

BMX w/ TE 11/1/10, ALND 12/6/10. 16 additional surgeries. TCHx6 2/17-6/2/11. Herceptin until 1/19/12. Femara 8/1/11, Arimidex 6/20/12, back to Femara 2013-2018. Dx 9/27/2010, DCIS, Stage 0, Grade 3 Dx 9/27/2010, IDC, Right, 2cm, Stage IIB, Grade 3, 2/14 nodes, ER+/PR+, HER2+ (IHC)
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Apr 4, 2012 04:31PM Moderators wrote:


We understand your concern and apologize.  Because of your feedback, we have stopped posting threads on the BCO Facebook page.    Having said that, we want to remind you that the BCO forums are public, not private, and searchable by Google. Please remember this when choosing a BCO screen name or avatar picture.   Again, our apologies.   Your Mods 
To send a Private Message to the Mods: community.breastcancer.org/mem...
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Apr 4, 2012 04:50PM - edited Apr 4, 2012 04:52PM by mumito

How come even our private messages show up when if we google our screennames.I had no idea that we are so exposed. I am sure I am not the only one who was unaware of this.

Dx 4/23/2008, IDC, 5cm, Stage IIB, Grade 3, 2/15 nodes, ER+/PR-, HER2-
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Apr 4, 2012 04:56PM Marple wrote:

Our PM's show up????

Dx 2006, IDC, Stage IIB, Grade 2, 1/14 nodes, ER+/PR+, HER2-
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Apr 4, 2012 05:07PM mumito wrote:

I have to delete 15 pagesTongue out
Dx 4/23/2008, IDC, 5cm, Stage IIB, Grade 3, 2/15 nodes, ER+/PR-, HER2-
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Apr 4, 2012 05:07PM - edited Apr 3, 2013 05:54PM by Shrek4

0

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Apr 4, 2012 05:13PM Moderators wrote:


Hey All,    Your PMs should not show up on a google search.  In response to mumito's post, we tried a few Google searches and PMs did not show up.     Your Mods     
To send a Private Message to the Mods: community.breastcancer.org/mem...
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Apr 4, 2012 05:14PM KittyKitty wrote:

OMG.

That is an unacceptable privacy and good faith violation on so many levels, and it just feels creepy.

Internet ethics are a very big deal, these days.

I also believe that this site should be much more strict with professional posters, even "breast cancer advocates", requiring them to post their paid employment in the signature line. That way no one is confused by their agenda.

I saw one well known advocate post here the other day, about working "with" the FDA, and I thought that was not even clear enough. There might be confusion that this person is an independent advocate working "with" or "in conjunction with" the FDA.

If a paid poster is working FOR the FDA, (as in paid employment), and then obviously the FDA will be influencing what they post, == that information should be clearly highlighted under their signature, as a matter of professional ethics.

 Just my two cents. 

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Apr 4, 2012 05:14PM - edited Apr 3, 2013 05:54PM by Shrek4

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Apr 4, 2012 05:22PM Moderators wrote:


Thanks Day   We would like to reiterate - your PMs CANNOT be found on a Google search!!!   Your Mods 
To send a Private Message to the Mods: community.breastcancer.org/mem...
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Apr 4, 2012 05:24PM - edited Apr 4, 2012 05:25PM by leggo

I got a little concerned about this, especially the facebook stuff (don't like facebook), but I just did a google search of my screen name and 8 pages in, still no mention of bc.org. Pretty safe, I think. Maybe the secret is picking a common screen name. Other stuff shows up and you have to page through so much to even find a mention of bc.org. When I put mine in, it was mostly about the UFC fighter and some other stuff, none of it related to bc.

"Once more into the fray... Into the last good fight I'll ever know... Live and die on this day... Live and die on this day." - The Grey
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Apr 4, 2012 05:25PM Stormynyte wrote:

You can't have an expectation of privacy on a public forum.

I think putting posts on FB is a good idea. This forum has been a life saver for me and if someone who needs it finds it by seeing it on FB I'm all good with that.

It can't rain forever. Dx 10/28/2011, IDC, 3cm, Stage IV, Grade 2, 4/11 nodes, mets, ER+/PR+, HER2- Hormonal Therapy 11/1/2011 Surgery 5/17/2012 Mastectomy: Right Chemotherapy 11/26/2012 AC Chemotherapy 1/28/2013 Taxol (paclitaxel) Chemotherapy 2/20/2013 Taxotere (docetaxel)
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Apr 4, 2012 05:25PM Letlet wrote:

This is a public forum so anything you post here will be found online, I don't think we should blast BCO, it's just the nature of it. A year ago I googled my screen name +  cancer and saw all my posts.

If there was a possibility of it being a private forum, I'd imagine they would start charging for access. Even this coupon web site that I used to frequent started charging me. I'd rather not have another monthly bill...just saying. 

Dx 8/27/2010, IDC, 3cm, Stage IIIA, Grade 3, 6/23 nodes, ER-/PR+, HER2+
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Apr 4, 2012 05:28PM Letlet wrote:

gracie1, I googled "gracie1+breast cancer" and this showed up on the first page. Your posts on DCA Anyone, Salon paches on breasts, nonstop family arguing, blocking a forum and immunoglobulin therapy.

Dx 8/27/2010, IDC, 3cm, Stage IIIA, Grade 3, 6/23 nodes, ER-/PR+, HER2+
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Apr 4, 2012 05:31PM - edited Apr 4, 2012 05:31PM by leggo

Yikes, Letlet, thanks for letting me know. Never occurred to me to add breast cancer into the search. Off to do deletions, I guess.

"Once more into the fray... Into the last good fight I'll ever know... Live and die on this day... Live and die on this day." - The Grey
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Apr 4, 2012 05:31PM SpecialK wrote:

I also did a google search and got a lot of cereal, the animal sedative Ketamine, a band named specialk, a radio station, and other people with that screen name, but not me.  10 pages in and no bco reference. 

BMX w/ TE 11/1/10, ALND 12/6/10. 16 additional surgeries. TCHx6 2/17-6/2/11. Herceptin until 1/19/12. Femara 8/1/11, Arimidex 6/20/12, back to Femara 2013-2018. Dx 9/27/2010, DCIS, Stage 0, Grade 3 Dx 9/27/2010, IDC, Right, 2cm, Stage IIB, Grade 3, 2/14 nodes, ER+/PR+, HER2+ (IHC)
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Apr 4, 2012 05:32PM Myleftboob wrote:

mumito

This was brought up on the Canadian Thread earlier in the week.  The link on FB has been deleted and the Mods have confirmed it.  I personally sent a PM to them to express my concern and they graciously acted.  It was done out of the best of intentions to I guess reach out to those on FB and to highlight the thread/forum.  I was uncomfortable with it to because I never post anything about my BC period on FB.  I choose to either PM or email friends and family.  The best  you can do here for privacy is not post your name or have a personal pic as your avatar.  That reminds me, need to change mine. 

T/C/H 2/17, 3/9, 3/30, 4/20 then H til 1/13 Surgery 12/13/2011 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left; Reconstruction (left): Tissue expander placement Targeted Therapy 5/11/2012 Herceptin (trastuzumab) Hormonal Therapy 5/11/2012 Arimidex (anastrozole), Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx 7/15/2016, IDC, 2cm, Stage IV, metastasized to liver/lungs/other, Grade 3, 0/4 nodes, ER+/PR-, HER2+ Chemotherapy 7/25/2016 Cytoxan (cyclophosphamide), Taxotere (docetaxel)
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Apr 4, 2012 05:33PM 1Athena1 wrote:

I am a privacy freak so did not join Facebook for that reason. But these are public forums - that's why anyone concerned about their privacy should avoid posting personally identifying information, including real name and real picture.

Thanks mods for your prompt response.

Anyone diagnosed with cancer should learn to have a healthy disrespect for statistics. Statistics are maths. It's the science which still eludes us. Dx 3/2009, IDC, 3cm, Stage IIB, Grade 3, 3/8 nodes, mets, ER+/PR+, HER2-
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Apr 4, 2012 05:37PM Bren-2007 wrote:

My screen name alone did not bring up any hits on google, but if I had cancer like Letlet suggested, everything I posted on BCO shows up.  I'm not worried about it as I don't post anything really personal.  Still, it can be disconcerting that our words are out there for anyone to read.

Most people I know wouldn't do a search of my screen name with the word cancer.  My family doesn't even know my screen name on this site.  It helps not posting a picture of yourself in your avatar.

I rarely post on Facebook.  Mostly all the endless comments about what I had for breakfast or where I'm standing at the moment get on my last nerve.

Bren

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Apr 4, 2012 05:42PM leggo wrote:

I only had a few posts I wasn't comfortable with...so, easy to remedy. Bren, Your post cracked me up. I asked my son the other day why he doesn't do facebook anymore and he said he was sick of reading "Dude, I got so wasted last night!..Check out the pics!) Kids.....

"Once more into the fray... Into the last good fight I'll ever know... Live and die on this day... Live and die on this day." - The Grey
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Apr 4, 2012 05:43PM - edited Apr 4, 2012 05:45PM by Letlet

SpecialK...yours was a little harder because your screen name is common but if you type your screen name plus breastcancer.org then your posts came out on 1 first page. I wouldn't imagine anyone trying to google you specifically via that way, it would have to be someone from BCO doing it but then we can all read each other's posts here.

Dx 8/27/2010, IDC, 3cm, Stage IIIA, Grade 3, 6/23 nodes, ER-/PR+, HER2+
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Apr 4, 2012 05:46PM ICanDoThis wrote:

And this is why we use Screen names, and why people don't post their real names and addresses.

Sue - Proud to be Krista's Mom Dx 12/28/2007, IDC, Left, 1cm, Stage IA, Grade 1, 0/3 nodes, ER+/PR+, HER2- (FISH)
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Apr 4, 2012 05:48PM SpecialK wrote:

letlet - thanks for the info!

BMX w/ TE 11/1/10, ALND 12/6/10. 16 additional surgeries. TCHx6 2/17-6/2/11. Herceptin until 1/19/12. Femara 8/1/11, Arimidex 6/20/12, back to Femara 2013-2018. Dx 9/27/2010, DCIS, Stage 0, Grade 3 Dx 9/27/2010, IDC, Right, 2cm, Stage IIB, Grade 3, 2/14 nodes, ER+/PR+, HER2+ (IHC)
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Apr 4, 2012 05:48PM rosemary-b wrote:

I just went to bco on Facebook, clicked on The Canadian Connection and it took me right to the thread. I guess it has not been deleted yet. Although I am careful what I post online, I would not want all my Facebook friends to read what I post here, just because many of them do not know as much about my bc as people here and I would like it to stay that way.

Dx 2/25/2007, IDC, Stage I, 0/2 nodes, ER+/PR+, HER2+
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Apr 4, 2012 05:48PM Moderators wrote:


Thanks Community for sharing your advice.  We agree and ask that you help keep our community safe by not submitting personally identifiable information in Posts and Topics.  Other tips include:   1- Do no use your real name, recognizable nickname, addresses, phone number or kids names 2- All posts and screen names are searchable by Google or other internet search engines. 3- Don't use your photo as your avatar if you don't want to be recognized.   Your Mods   
To send a Private Message to the Mods: community.breastcancer.org/mem...
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Apr 4, 2012 05:54PM Sommer43 wrote:

Hum

I run another forum and as the lady above has stated, private messages do not show up on google.  However, depending on the search term entered, threads can show up on google, which is how I found this place. 

When we post on forums, we do run the risk of our posts being seen by the world, which is why the moderators give guidelines to be read prior to posting.  Our privacy is our responsibility, not anybody else's. 

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Apr 4, 2012 05:58PM - edited Apr 4, 2012 06:00PM by 1Athena1

A gentle word to the wise: I would say a majority of people who post on BCO are very, very easy to "track down" as people. A reporter, a federal agent, a researcher, a capable Internet and datas user with no specific training could do it in a nanosecond.

Raise your hand if you have EVER:

--Posted a picture of yourself

--Given both your first name AND town/city of residence

--Remember those funeral home guest books we sign for dearly departed sisters - have you ever linked to one, THEN signed the guest book with your real name AND place of residence?

--Have you given the name of any adult family member (along with place of residence and your first name)?

--Have you, along with some of the above information disclosed your profession or employer?'

--Provided detailed information about dates of treatment AND name of hospital, AND  dr's and nurses seen and specific chemo drugs infused ALL TOGETHER - whether in separate posts or the same one?

--Provided your age, place of residence AND ccupation of a spouse?

I don't want to alarm anyone.

Most people don't give a whit about tracking anyone here down, there are a million discussion forums, a gazillion people using the Internet and much data is lost in the shuffle. But think twice before you believe you don't disclose anything personal, because for the most part you do. Any single one of the above may not get you quickly id'd. But give me first name, name of city and picture and I can tell you that you can be tracked down in a heartbeat.

Also, any post on Facebook, EVER stays "forever." Facebook does not erase its data.

Again, if you are not a fugitive, a VIP or a "world's most hated" person you need not worry. Just be aware that your information IS out there if you have ever given it once.

Anyone diagnosed with cancer should learn to have a healthy disrespect for statistics. Statistics are maths. It's the science which still eludes us. Dx 3/2009, IDC, 3cm, Stage IIB, Grade 3, 3/8 nodes, mets, ER+/PR+, HER2-

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