Our private details, real names, diagnoses, etc. revealed online

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  • itsjustme10
    itsjustme10 Member Posts: 796
    edited July 2012

    Every post on here can be found by Google.  It's public information.  Your contractual relationship with this site allows that - you and everyone else agreed to it under the TOS you agreed to in order to get privileges to post.

    If something is on the internet, pointing it out is not breaking rules.  Breaking rules would be saying something like ""Screen name X" is actually John Doe, who resides at 123 Main Street, Any City, USA".  That's providing information the poster didn't provide.  That's invasion of privacy.  Saying that "Screen Name X" said some statement is not breaking the rules.  Message boards are public.   Blogs, by their very nature, are not secrets.  They are searchable by anyone who really wants to find them.  Things out there on the web are part of the public domain.

    If you don't want your words on the internet, don't post on the internet.  If you have concerns about your privacy, make sure your screen name doesn't have any identifiable characteristics.  Don't list your city and state on your profile.  Don't give the names of your doctors out.  It's up to you, not BCO, to guard your privacy.

    If someone wants to discuss "Screen Name X", what difference does it make?  No one knows who they really are, so they have given up no anonymity.

  • Hindsfeet
    Hindsfeet Member Posts: 2,456
    edited July 2012

    I read the whole blog. I would have no problem with it if they posted merely their opinions about alternative medicine. I find fault when it's reveiling names and information not posted here on bco...It is private infomation, they found, and disclosed. It's personal. It's a rant against many of our alternative bco members and their choices.

    It's enough that we have to struggle with cancer, treatments, and whatever than to fight this needless war. There are tons of alternative sites on the Internet...why bco? BCO is supposed to be a support forum, and discussion to what is working for us. Let's keep it just that.  

    I know the moderators are on top of this. They have a tough job. I am grateful that we have a place where we can talk and embrace one another. Thank you mods. This tread probably should be taken off active topics as it's a unnecessary drawing card.

  • sweetbean
    sweetbean Member Posts: 1,931
    edited July 2012

    Actually, screennames and actual names were posted in the comments.   First and last names.   Posts are public,  yes.  But posting real identities is kinda messed up, no matter how much you disagree with them.

    For the record, if people are truly PM'ing newly diagnosed women and trying to persuade them that conv treatment is going to kill them, that is also messed up.    Newbies are scared enough; they don't need PM's from people they don't know scaring the crap out of them.  That is epically uncool.  (I know because I experienced that in person when I was diagnosed.  I had several people try to talk me out of conv treatment because it was going to kill me.  I just finished Herceptin on May 17 and ran my first 5K on July 7th.  Not exactly dead.)

    But I am still kind of creeped out that someone might post my full name somewhere.  I talk about a lot of personal things on this site. 

  • 1Athena1
    1Athena1 Member Posts: 6,696
    edited July 2012

    I agree, Nancynow. Ignorance is bliss. The less attention paid the better for all. The mods here can't do a thing, so it's up to us to ignore.

  • crazy4carrots
    crazy4carrots Member Posts: 5,324
    edited July 2012

    Sweetbean -- If you have never posted personal info anywhere that can be connected in any way to your BCO name, then you have nothing to worry about (probably).

    Curiosity about posters here and elsewhere can lead some folks to an internet search.  It's kind of fun, actually (yes, I've done it re someone who truly annoyed me at one point) to start to connect the dots and come up with a name and sometimes even a face.  It's quite possible that someone has done it about me, too.

    There is virtually no privacy on the 'net, and some of us find that out a little too late for comfort.  I have a feeling that, because of the easy accessibility of info about people, there will eventually be fewer and fewer folks willing to stand for public office.  

  • motheroffoursons
    motheroffoursons Member Posts: 333
    edited July 2012

    I just wanted tosay that I was sorry to hear that Impositive is stage 4 and still believes in the fungal nonsense.  Last year I had an extended, but mostly polite, debate with her about the fungal theory.  Best wishes impositive, and please get some other help too.

    I have tried to be respectful when debating on this forum, and I tend to correct scientific errors as that is my background. (I got chewed out by one individual for even stating that my background was microbiology).  There have been some other rude comments to my posts which I try to make politle. I too am losing interest in this forum where questioning any treatment gives you the label of  of the t-word.

    I feel very bad for the newbies that are given false hopes as not all treatments are valid.

  • Hindsfeet
    Hindsfeet Member Posts: 2,456
    edited July 2012

    I'm in contact with impositive and I'm not sure she is stage IV. I would say stage 3 in her nodes. She is doing well, and staying away from forums because she is staying away from stress. She doesn't want to be here so there's no need to bring her up or the fungus theory. It's not fair to her in that she's not here to defend herself. In her defense, she wasn't far off from what's being studied now...baking soda in cancer trials in Canada & Arizona University.

  • motheroffoursons
    motheroffoursons Member Posts: 333
    edited July 2012

    Evebarry, I read on another post she was Stage 4.  I hope she is only stage 3.  I was referencing the fungal theory discussion as it was a discussion on alternative thread that stayed mostly polite.  I even remember communicating with you during that time.

  • petjunkie
    petjunkie Member Posts: 317
    edited July 2012

    I'd like to see this site if anyone wants to message me the link.

  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited July 2012

    I did read the entire site/comments before the link was removed. Will refrain from getting involved in the fray but just wanted to say that as far as I know, Leah who posts on bco is not the same Leah (whose comments are pro-alt) who commented on that site. BCO's Leah has had only conventional tx and is not seen on alt threads. She is a sweet, kind woman who gives great advice on wigs. Leah is not an uncommon name and I really don't think it's the same person. Caryn

  • luv_gardening
    luv_gardening Member Posts: 1,393
    edited July 2012

    I'd like to apologise to for putting the link in the OP.  I didn't get to bed till 6am this morning (in Australia) and wasn't thinking straight at that time as I was upset and overtired.  This morning I couldn't find the thread and thought it had been deleted or I would have removed it then.  Thanks mods for removing the link.

     Embarassed  Embarassed  Embarassed

  • Hindsfeet
    Hindsfeet Member Posts: 2,456
    edited July 2012

    motheroffoursons...I'm not at war with you or anyone. Yes, mostly the fungal thread was a discussion and informative. I'm just defending impositive who isn't here to defend herself. It's so easy to get misinformation due to hearsay. I hate it when people insult those wo want to discuss it or look further into it.  Even if we differ doesn't mean either of us are horrible people.

    I haven't tried a lot of alternative yet, other than diet, because I'm only stage 1a. I did take a gamble and went for Herceptin, which has put me in a miserable place with no energy, and heart issues. I'm just hoping I'm lucky enough to recover. So far everything my doctors have said, the odds being in my favor not to have a recurrence, side effects and etc hasn't been in my favor. I seem to land in the side effects of the worse senario, which makes me all the more gun shy of conventional meds.

  • luv_gardening
    luv_gardening Member Posts: 1,393
    edited July 2012

    It seems one person has gathered information from around the web on people she disagrees with.  She has then published it as she remembered it or out of context in a way that misleads the readers on a site that is not moderated like BCO.  There are so many basic and important errors in the information. 

    People on the blog claim to be professionals yet seem to lack any understanding of freedom of speech, freedom to choose ones own treatments, even basic compassion as they defame people who are fighting stage IV cancer.

    They don't understand the basic fact that opposing someone tends to have the opposite effect and does nothing to persuade them to change.

  • luv_gardening
    luv_gardening Member Posts: 1,393
    edited July 2012

    That's life, when you said a surgeon and a nurse, would the nurse be the one who constantly spells fungus "fungas", or talks of intERvenous instead of intRAvenous?  If I was having a nurse insert an IV line I'd want to know she or he knows the difference between putting the needle IN the vein or BETWEEN two veins.  I'd also want to know he or she honours patient confidentiality.  I'd want to know she wouldn't use a patient's disease progression or their depression to taunt them. 

    I'd also want them to know that MOST conditions other than infections are incurable (but often treatable) unless they can be fixed with surgery.  Especially they would understand that diabetes is incurable.  Even the average mature adult with little medical knowledge must know that diabetics need medication for life and have their life expectation lowered.  Or maybe they don't understand the exact meaning of the word cure?  I don't think we're dealing with a nurse at all.

    If they want to challenge me I have seen many more inconsistencies, I could write pages but I'll spare you all.  Just look up diabetes cure on the net, or intervenous in a dictionary.  Just basic knowledge for a real nurse.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited July 2012

    Joy, we know now why he/she never posted a full sentence on BCO but only pasted Orac's blogs

    I see the usual quackwatchers delegation well represented here.  A little entertainment while we wait for the BCO mods to have the trashy thread deleted on their site ? 

    James Randi (aka ? ) their guru, or,  hum....shall I say...'prophet'

    http://www.youtube.com/watch?v=vky1b1_gJFw&feature=related

    http://www.youtube.com/watch?v=72HaEa6IoCs&feature=related

    http://www.youtube.com/watch?v=sPdA7nvz0F4&feature=related

    http://www.youtube.com/watch?v=oUldQZNs1X0&feature=related

    LMAO, huge belly laughs !!!!!!!!!! 

  • sweetbean
    sweetbean Member Posts: 1,931
    edited July 2012

    I have to say, I don't mind Quackwatch.  I'm surprised that they list stuff like "wheatgrass," because it's just a vegetable juice, for God's sake.  Or the macrobiotic diet - macrobiotic diets are generally pretty healthy, so what do they have against a healthy diet?  (Personally, I don't do a macrobiotic diet - it seemed like a lot of calculations.  And I wouldn't use it to cure my cancer, either.  But I do eat a very healthy diet, so I definitely believe that there is merit to that approach.) 

    My issue with Quackwatch is that it doesn't really discriminate between things that can be healthy for you (like juicing) and the true snake oil that is out there. 

    Most of the alt women on this Forum have had conventional treatment - many are using CAM treatments to recover after chemo or reduce their risk of recurrence.  There are only a few hard-core alt women on this site and only a few of those hard-core women are really strident about the subject.

    I'm always surprised when everyone on this forum gets painted with the same "whack-job" brush.  We are actually a pretty balanced group, in my opinion. 

  • Anonymous
    Anonymous Member Posts: 1,376
    edited July 2012

    Sounds like blackcat is having a serious episode of projectile vomiting this a.m. on the other site

    I feel my stomach turning 

    Sweetbean, glad to see you distancing yourself from that crowd Wink 

  • sweetbean
    sweetbean Member Posts: 1,931
    edited July 2012

    Actually, I don't really subscribe to one side or the other.  I did all the conventional treatment and don't subscribe to the view that anyone is hiding the real cure for cancer or that conventional treatment is killing everyone.  But I also like a fair number of CAM treatments and think that they can do a lot of beneficial things for us.  So I generally have to roll my eyes when someone says that all alt treatments are bad without providing context.  Using acupuncture to cure your cancer?  Not awesome.  Using acupuncture to prevent/reduce nausea and neuropathy?  Awesome. 

    I want to know what is helpful and what is snake oil.  And there is definitely snake oil out there.  So I read a huge number of blogs that range from totally alt to totally science. 

    I read the comments on the blog and....wow....words fail me.   When I explained to my sister about the fighting that goes on in the Alt Forum, she said, "Really?  Women with cancer are yelling at other women with cancer?"  Yup. 

  • luv_gardening
    luv_gardening Member Posts: 1,393
    edited July 2012

    Lol Sweetbean.  I too read both conventional and alternative and have made no secret that I am a moderate.  I have always made it known that I have no qualifications, indeed if I was a nurse I believe I couldn't say anything that sounded like advice without breaching some agreement, or maybe that's only in Australia. Strangely some want to prove I don't have qualifications???

    So it has just been stated on another site that there is a cure for diabetes.  I'd love to see those research links, please.  The only one I know of happens with NIDDM as a side effect of gastric bypass in obese people.  But my post specifically excluded surgical cures.  It was about medical cures as opposed to surgical.

    Asthma, hay fever, osteo and rheumatoid arthritis, cerebral palsy, eczema, psoriasis, Lou Gehrig's (ALS), the common cold, herpes (all varieties), cystic fibrosis, multiple sclerosis, Alzheimer's, the list is endless.  Oh please someone, anyone, tell me these are medically curable, not just treatable or manageable.  I know so many people whose lives would turn around.

    PS, to cure is to restore someone to health so the condition is completely gone, not in remission. 

    Special peaceful thoughts being sent to someone in emotional need.

    I do check my facts before hitting the submit button.  I even know how to use spell check.  Woohoo.  How convenient.

    ETA.  I'm off to bed to catch up with my sleep.  Have a nice day all.

  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited July 2012

    Sweetbean,

    Your last post mirrors my feelings to a T. Very balanced and reasonable. I admit that I am always suspicious of extremes and zealotry. While I can't comment on the legality of what was posted on that other site, it just was mean spirited and smacked of a crusades type zealotry. I'm just about to book an oncology massage at a beautiful day spa. Won't cure my bc but I cannot undervalue the relaxing and de-stressing aspects of it! Caryn

  • sweetbean
    sweetbean Member Posts: 1,931
    edited July 2012

    Ah, Caryn, we are peas in a pod!  You go enjoy that oncology massage - I am a firm believer in the healing power of positive touch. 

    The vitriol on the other site was really astounding and saddening.  What was most shocking to me was the way people were being criticized for supporting Stage IV women, especially those who have run out of options.  If a Stage IV woman wants to try a alt treatment and, after three months, scans show regression, then why would I tell her to stop?  If someone is experiencing regression on any type of treatment ---- GOOD!   I'm happy for them!  But if the scans came back with even a small amount of progression, I would have encouraged her to explore other options.  My ego isn't tied up in this at all - whatever kicks the cancer's ass is fine by me.

    I generally feel that any early stage woman should probably do the recommended conventional treatments, unless she has heart issues, etc.  I also feel that you should get multiple opinions, so that you know that your oncologist is recommending the correct treatment.   I realize that overtreatment can be a problem, but I think undertreatment is worse.

    For the record, I don't know why Maud's post was removed by the Community.  

  • Moderators
    Moderators Member Posts: 25,912
    edited July 2012

    As some members have mentioned, we cannot moderate what is being said on other sites. That said, we have contacted them to let them know that regrettably disagreements from BCO have spilled over to the comments in that particular blog, We are doing what we can to alert them to the issue. Moving forward, ignoring it is the suggested response. 

    Thanks, Your Mods

  • Anonymous
    Anonymous Member Posts: 1,376
    edited July 2012

    Thank you moderators for lifting the automatic ban generated by the community removal of my post, I was not able to thank you in a PM Frown

    Sweetbean, this is censorship in all its glory

    The zealotry (as you so apply said) that we are all witnessing is actually reflecting very badly on the authentic quackbusters.  I never ever hit the links provided by thenewme or blackcat because (autocensor), but now that I have read what a few posters said on that site, I have to respect what they stand for (integrity and self-respect) when they declined to assist blackcat in her campaign against the alties on BCO.  One poster on that site mentioned something to the effect that she did not go after Quackers (as opposed to quacks) meaning us, vulnerable suffering women.  There was also another voice of reason this morning asking to stop this madness. 

  • Moderators
    Moderators Member Posts: 25,912
    edited July 2012

    In general, however, we ask that everyone please stay respectful to other members, or ignore them. 

  • luv_gardening
    luv_gardening Member Posts: 1,393
    edited July 2012

    An important point to remember is that posting on some internet sites allows the site owner to see the IP address of the poster.  As I live in a small rural town, I avoid posting on such sites if they are at all controversial or untrustworthy.  Some ISP's use temporary (dynamic) IP addresses that are associated with the town or city where the ISP is physically located so they are safe.  If your ISP address is static then it is less private.  Does anyone know if one's location or other identifying information would be known when posting from a mobile phone?

    If people wish to make it harder to be found in a google search, they could use a common name or word.  For example I could call myself "search" or "name".  That would bring up millions of links so would be impossible to find in isolation.  But when posting on a forum with people who have a unique name like my current one then a search for the other name would bring up the forum where the posts can be found.  So I guess another change of name is in order for me. 

    I have never posted in the name Leah. Her writing style and content is quite different to mine. I'm sure anyone who knows me knows I'd never call anyone honey or any other similar name.  I specifically asked for my real name not to be used.  It seems that privacy, respect and common courtesy are sometimes only given when a person's work contract or other agreements require it.  When given freely it reflects on the good character of the person.  When such respect is ignored it reflects negatively on the person's character, showing they have no concern for the feelings of others. If people don't mind appearing to be heartless then that is their reputation at stake, not the one being insulted or disrespected. 

  • luv_gardening
    luv_gardening Member Posts: 1,393
    edited July 2012

    Once again I have changed my name to protect my identity.  It will be harder to search for me now.  Those who wish to keep repeating my real name with my screen name might want to think seriously about what's in their heart and how it makes them look.  Is it ethical to deny someone medical confidentiality just because they aren't your patient?  I find it strange that people can change their ethics depending on whether it's their work or their private life.  I guess they only really have ethics when it's imposed from outside with the fear of losing their job.

  • luv_gardening
    luv_gardening Member Posts: 1,393
    edited July 2012

    Mods, thanks for contacting the other site.  Clearly we need better laws for internet harassment and medical privacy.  Better still, we need people to have good morals and common decency.

  • Stormynyte
    Stormynyte Member Posts: 650
    edited July 2012

    I agree, it would be wonderful if everyone had strong morals and common decency, but watch the news for 10 minutes. It sadly isn't that way. We have to protect ourselves online just as we do at home. There are people who will use our info to hurt us if given the chance, no matter where we are.

  • luv_gardening
    luv_gardening Member Posts: 1,393
    edited July 2012

    Cyberbullying

    Cyberbullying is the use of the Internet and related technologies to harm other people, in a deliberate, repeated, and hostile manner. As it has become more common in society, particularly among young people, legislation and awareness campaigns have arisen to combat it. 

    Legal definition

    Cyberbullying is defined in legal glossaries as

    -actions that use information and communication technologies to support deliberate, repeated, and hostile behavior by an individual or group, that is intended to harm another or others.
    -use of communication technologies for the intention of harming another person
    -use of internet service and mobile technologies such as web pages and discussion groups as well as instant messaging or SMS text messaging with the intention of harming another person.

    Examples of what constitutes cyberbullying include communications that seek to intimidate, control, manipulate, put down, falsely discredit, or humiliate the recipient. The actions are deliberate, repeated, and hostile behavior intended to harm another. Cyberbullying has been defined by The National Crime Prevention Council: "when the Internet, cell phones or other devices are used to send or post text or images intended to hurt or embarrass another person.

    A cyberbully may be a person whom the target knows or an online stranger. A cyberbully may be anonymous and may solicit involvement of other people online who do not even know the target. Cyberbullying could be limited to posting rumors about a person on the internet with the intention of bringing about hatred in others' minds or convincing others to dislike or participate in online denigration of a target. It may go to the extent of personally identifying victims of crime and publishing materials severely defaming or humiliating them.

    Cyberbullies may disclose victims' personal data (e.g. real name, home address, or workplace/schools) at websites or forums or may use impersonation, creating fake accounts, comments or sites posing as their target for the purpose of publishing material in their name that defames, discredits or ridicules them.

    Some cyberbullies may also send threatening and harassing emails, instant messages or texts to the victims. Others post rumors or gossip and instigate others to dislike and gang up on the target.Protection for victims of any age

    There are laws that only address online harassment of children or focus on child predators as well as laws that protect adult cyberstalking victims, or victims of any age. Currently, there are 45 cyberstalking (and related) laws on the books.

    The US federal cyberstalking law is designed to prosecute people for using electronic means to repeatedly harass or threaten someone online. There are resources dedicated to assisting adult victims deal with cyberbullies legally and effectively. One of the steps recommended is to record everything and contact police.

    Among factors that motivate stalkers are: envy, pathological obsession (professional or sexual), unemployment or failure with own job or life; intention to intimidate and cause others to feel inferior; the stalker is delusional and believes he/she "knows" the target; the stalker wants to instill fear in a person to justify his/her status; belief they can get away with it (anonymity). UK National Workplace Bullying Advice Line theorizes that bullies harass victims in order to make up for inadequacies in their own lives. 

  • itsjustme10
    itsjustme10 Member Posts: 796
    edited July 2012

    The only information anyone can have is information you gave someone on the internet.  Forums or Facebook or Twitter are not the same as sitting down to coffee with your most trusted friends.  You have to be vigilent about what you say about yourself.  If privacy is a concern to you, you have to guard your identity.  (and ichanging your screen name, but telling everyone you did probably doesn't meet the criteria, as your posts about changing it will show up on Google). 

    The itnernet is not your friend.  It's a useful tool, but like with everything else in life, there is no free lunch.  It's up to you to protect yourself.  It's not up to total strangers to do it for you.  All the rhetoric in the world won't change the fact that you and only you can control what is talked about and what is revealed.

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