Our posts show up in Google Searches?

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woodstock99
woodstock99 Member Posts: 206 Member
edited April 2023 in Uterine/Endometrial Cancer #1

Are members aware that their posts may show up in google searches? I was not and even after reading the CSN Privacy Policy I am not clear how that would or could happen. https://csn.cancer.org/discussion/324374/privacy-notice.

I was searching for something last night that related to a recent post of mine and when I got to the 4th page of Google results I saw my original post which I could click on to get to this site.

This may have come up before and I was unaware of it but this disturbs me. While no one would know my name, etc, there is often enough specific personal info in our posts that it is possible to identify someone but the real issue for me is that I believed we were posting to a controlled and private group and our posts and replies could not be seen or read by anyone who was not a registered member on CSN.

This sadly makes me very uncomfortable. How do you feel about this? I did send a message to CSN inquiring about this.

Comments

  • cmb
    cmb Member Posts: 1,001 Member
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    Yes, these discussions are searchable on Google and similar search tools. See the notice at the top of the page at: https://csn.cancer.org/

    "Please remember that these discussion boards are a public forum, which means open to the public (i.e. non-CSN members) and the content can be found via internet search engines. Members are strongly advised not to share personal identifiers such as real names, email address, telephone number, street address, etc. This information can be used to identify you and link you to the content you provide. Other areas of CSN are restricted to members only and cannot be found by search engines."

    This is why it's very important not to share any personally identifiable information in the posts.

    This has been CSN policy for as long as I've been on the site. In fact, a Google search link to an old post is how I found this site in the first place. I suspect that others have found their way here in the same way.

  • woodstock99
    woodstock99 Member Posts: 206 Member
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    Thanks for this explanation but even without your name, etc, I still feel we are sharing very personal and private information info. I thought since you had to sign-up for access that these were private forums. I need to rethink my comfort level with this particularly since we do not have the ability to delete specific posts if we want which other sites/forums allow. Or at leasts be more mindful of exactly what I write. We often speak to doctors or cancer centers or some things that are fairly specific that I wouldn't necessarily want in the public domain. Thanks.

  • woodstock99
    woodstock99 Member Posts: 206 Member
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    Also that message is only posted at the home page of all forums and not on this topic page so I probably never even noticed it before.

  • Forherself
    Forherself Member Posts: 999 Member
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    I found this site with a post from Linda Procopio. I think using the internet it is best to not put anything on that you don't want everyone to see. We are anonymous if we don't use our whole name.

  • cmb
    cmb Member Posts: 1,001 Member
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    Interestingly, one of Linda's posts also led me to this site. While gone for many years now, I think she'd be very pleased to know that she's been the conduit for others to land on this site, especially as she was key in getting this board established as a separate site.

    Of course, nowadays we'd never use our whole names here as she did back then.

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,440 Member
    edited May 2022 #7
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    I would never had found this site if it were not for a Lind Procopio post either, and this site has brought me so much over the years which I am extremely grateful for.

    IMO I think posting anything anywhere is always discoverable. Nothing is secure - heck - I have a background check with the govt that got hacked - that bothers me even more! I have found company information on the web that I thought would be secured but isn't. Anyone who registers here can read anything we post and we have no idea if they are good or evil. I know every time I hit the POST or SEND button it is up for grabs. It is the personal information I give that I expect to be protected that includes DOB, SS, etc that I find most offensive.

  • woodstock99
    woodstock99 Member Posts: 206 Member
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    I understand everyone has a difference of opinion about this however I feel strongly that the message/verbiage should be posted at the top of every specific forum and not just once at the home page. I do not recall how I found this site but I went to the UC discussion board page which I bookmarked so I never sat this message. I may be overreacting but I would have worded certain posts differently if I was aware that my posts verbatim would appear in google searches. While I have never used my name, phone, email, etc there may have been references to providers who if they happened to search and saw my posts would know exactly who I was. I honestly thought we were in a private forum and I just plan to be more mindful going forward knowing with what i saw or how I saw it. I am not looking to leave the site as it has been incredibly helpful to me and I hope OI have to others as best as I have been able to and look to continue these dialogues and exchange of information and experiences. I am a very private person and keep things close to the vest so I am sure my reaction to this differs from others. There is certainly lots of info out there on the web about all of us much of which I cannot control but I do try to manage what I can. Thank you and wishing all a lovely weekend.

    "Please remember that these discussion boards are a public forum, which means open to the public (i.e. non-CSN members) and the content can be found via internet search engines. Members are strongly advised not to share personal identifiers such as real names, email address, telephone number, street address, etc. This information can be used to identify you and link you to the content you provide. Other areas of CSN are restricted to members only and cannot be found by search engines.:

  • thatblondegirl
    thatblondegirl Member Posts: 386 Member
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    Hi

    I always knew it was “public,” but didn’t know my username was going to end up as my screen name. And since my name isn’t Mary or Jane, it made me pretty uncomfortable!! But at the time I “had bigger fish to fry” and let it stand! So, that’s why I recently changed it! I’ve continued to sign my posts with my name, until everyone kind of gets used to it, and am transitioning to just using my initial.

    We love having you around here, so I’m glad it won’t deter you!

    Hugs, A

  • ConnieSW
    ConnieSW Member Posts: 1,688 Member
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    Linda led me here, too, via google. Wish I could have thanked her. I read for awhile before I signed up. I’ve been here for 10 years now and don’t recall there ever being a problem re identities.

  • woodstock99
    woodstock99 Member Posts: 206 Member
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    I appreciate everyone's feedback and just wanted to clarify that I know pretty much anything we say or do online is public however I did feel that if I was personally distressed by seeing a pots of mine come up in a google search and was uncomfortable about that for whatever reason that I thought the moderators would resect my wishes and delete it. There were actually 3 posts in the past year out of almost 40 that I requested to be deleted. They offered to change my user name but that is not the issue for me. This is not Google or Facebook although on FB or IG, I can delete posts or comments at any time. This is a support forum and in my opinion making a request for an exception should be honored. But I will let it go and be mindful in what I or how I post going forward knowing we have no control (except edit option for one week) over our content. I am not leaving the forum as the good far outweighs the bad and I have gotten so much from everyone on here the past year and hopefully have given back what I could in return. I do understand it's my issue and I am sorry if I upset anyone with this post. Thanks for understanding.

  • SpringerSpanielMom
    SpringerSpanielMom Member Posts: 137 Member
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    Wow, I think I got here via Linda too. Hope she somehow knows how grateful we all are. Hope DerMaus knows too--you've heard me say her post changed my life. Cmb, let me keep remembering to thank you, and Forherself, Quiltergal, Bluebirdone, all you great warrior sisters still with us.

  • MoeKay
    MoeKay Member Posts: 481 Member
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    I had the privilege of being a member of this board for a number of years before Linda's passing. Her posts were in a class all their own, as was Linda. Such a beautiful soul will always be remembered, appreciated and admired for all she gave to everyone whose path she crossed. I always say that there are givers and takers in this world, and Linda was the ultimate giver.

  • emdav13
    emdav13 Member Posts: 1 Member
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    I am her granddaughter Emily, I believe that she did this intentionally. I was only 11 years old when she passed, so having these posts is amazing for me to look back on her journey. She shielded us from a lot and didn't want us to worry. I believe she used this platform as a journal in addition to a community. We are all very thankful for this group and wish you the best always! She would be thrilled to know that her words still have a home with you all.

  • Forherself
    Forherself Member Posts: 999 Member
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    THANK you for posting this. Your grandmother was a remarkable woman.

  • BluebirdOne
    BluebirdOne Member Posts: 656 Member
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    Thank you so much for coming back and telling us about yourself. Indeed, your grandmother gave so many of us hope, words of wisdom and then real sadness when I realized that she had been gone many years before I had come on board. She left a legacy that I do not think has been equaled since and we have had some pretty incredible folks here. All of our members who have contributed leave a bit of themselves here, trying to help others, trying to navigate through this supporting each other. I hope your family derives a lot of comfort knowing how special Linda was to this community, and continues to this day. Thanks so much!

    xxoo

    Denise

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,440 Member
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    Emily, thank you for stopping in and letting us know. Please share with your family just how much your grandmother has done for others. It is quite the legacy and she it thought of highly by so many of us.