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

Forum: Alternative Medicine —

This forum is a safe, judgement-free place to discuss Alternative medicine. Alternative medicine refers to treatments that are used INSTEAD of standard, evidence-based treatment. Breastcancer.org does NOT recommend or endorse alternative medicine.

Posted on: Jul 8, 2012 12:37PM - edited Jul 10, 2012 12:06AM by luv_gardening

luv_gardening wrote:

(link removed by Mods to protect BCO members)

See the comments.  Many details are just plain wrong or exaggerated.

ETA My apologies for including the link.  Thanks to the mods for fixing it.

Dx 7/2/2009, ILC, 4cm, Stage IIIA, Grade 2, 9/24 nodes, ER+/PR+, HER2-

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Jul 8, 2012 01:38PM Ruby- wrote:

Moderators, I was also alerted to thenewme and blackcat's diffamation of BCO posters on that site and their violation of the U.S. Copyright Law.  

This calls for legal intervention, no less.  Some posters on that thread became concerned about his/her copy and paste and asked blackcat to use quotation marks....

You can skip the delusionary posts to blackcat's dated June 19.

“The cell’s intracellular cytoplasmic sea is an ocean of symphonic motion awash with incomprehensible complexity.” Howes, M.D., Ph.D Dx 2010, IDC, 2cm, Stage IIB, Grade 1, 3/5 nodes, ER+/PR+, HER2-

Jul 8, 2012 02:25PM Hindsfeet wrote:

Ouch!

Dx 6/13/2014, IDC, 1cm, Stage IV, Grade 3, mets, ER+/PR+, HER2+

Jul 8, 2012 03:31PM realistically wrote:

You do know that this is a public forum, right? Privacy rights are very limited on the internet. 

Breastcancer.org has shown a continual disregard for US Copyright law when it comes to posts by the users of these discussion boards. It would be hardly likely to want to defend the rights it has to what is posted here when copied onto other discussion sites. 

Jul 8, 2012 03:35PM suzieq60 wrote:

Leah has also posted there and linked a thread, so who's at fault? All of our posts are in the public domain.

2nd diagnosis October 2010 - IDC 5.8mm node negative - missed on mammogram in October 2009 Dx 10/13/2009, ILC, 1cm, Stage I, Grade 3, 0/5 nodes, ER+/PR+, HER2+

Jul 8, 2012 03:47PM - edited Jul 8, 2012 03:48PM by Ruby-

Realistically...new poster with 2 posts, realistically laughable 

Moderators, how do some of them get away with multiple IDs ?

SusieQ, well, we all know who you stand by, don't we ? or maybe......

“The cell’s intracellular cytoplasmic sea is an ocean of symphonic motion awash with incomprehensible complexity.” Howes, M.D., Ph.D Dx 2010, IDC, 2cm, Stage IIB, Grade 1, 3/5 nodes, ER+/PR+, HER2-

Jul 8, 2012 03:58PM NattyOnFrostyLake wrote:

SuzieQ and our old "new" poster,

Defending copyright thieves is inexcusable. The web is not public domain. Damages have been awarded to people who reposted others' posts. BCO has strict rules about this.

http://gizmodo.com/5681714/attention-the-web-is-not-public-domain

Jul 8, 2012 04:38PM - edited Jul 8, 2012 04:40PM by bluedahlia

There is no profit involved in sharing the info that has been posted.  Therein lies the difference. And credit was given to the posters at BCO.

But some people without brains do an awful lot of talking... don't they? - Scarecrow, Wizard of Oz.

Jul 8, 2012 04:48PM NattyOnFrostyLake wrote:

Nope. Has nothing to do with profit or credit. Has to do with intention. Ask your daughter about IP law.

I could be out in the street giving away xeroxed copies of THE WORLD ACCORDING TO GARP and still be sued.

Jul 8, 2012 04:55PM - edited Jul 8, 2012 05:05PM by Ruby-

Women from BCO were viciously attacked, defamed and their privacy violated on a quackbuster site

"United States privacy law embodies several different legal concepts. One is the invasion of privacy, a tort based in common law allowing an aggrieved party to bring a lawsuit against an individual who unlawfully intrudes into his or her private affairs, discloses his or her private information, publicizes him or her in a false light, or appropriates his or her name for personal gain.

The essence of the law derives from a right to privacy, defined broadly as "the right to be let alone.

Invasion of the right to privacy can be the basis for a lawsuit for damages against the person or entity violating the right"

Neither Chilli nor Vivre had given out their blog - they are WERE private blogs, by invitation only. 

“The cell’s intracellular cytoplasmic sea is an ocean of symphonic motion awash with incomprehensible complexity.” Howes, M.D., Ph.D Dx 2010, IDC, 2cm, Stage IIB, Grade 1, 3/5 nodes, ER+/PR+, HER2-

Jul 8, 2012 05:00PM - edited Jul 8, 2012 06:00PM by thats-life-

Its sad really.

Blackcat stated she is keeping a list of women who have progressed to stage IV while being involved with the alt forum here at BCO. Im sure she/he knows that recent stats estimate around 30% of all earlier stage BC dx's will progress to stage IV. Im sure no one keeps a list of members who have progressed to stage IV using conventional treatment recommendations. Well, i would hope not...kind of morbid.

One poster on that blog dismissed 'alties' deaths as returning to the crystalline.. or something to that effect, stating we shouldnt be too upset in that case. I would encourage people to consider the blog as a personal opinion only, and the followers as people who have embarked on a crusade to make a point only, without consideration of the experience of 'incurable' cancer.

It is the opportunity to build what one loves into something permanent that makes this very difficult game worthwhile. mets skull, rib, hip, spine. Dx 8/2010, IDC, 1cm, Stage IV, mets, ER+/PR+, HER2-

Jul 8, 2012 05:11PM - edited Jul 9, 2012 05:21AM by rosemary-b

This Post was deleted by rosemary-b.
Dx 2/25/2007, IDC, Stage I, 0/2 nodes, ER+/PR+, HER2+

Jul 8, 2012 05:13PM 1Athena1 wrote:

Very tasteless, joy, I agree.

But NattyGroves, I suggest that you keep reading rules because some talk about posting under multiple identities. I wouldn't point the finger if I were you - you might poke out your own eye.

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-

Jul 8, 2012 05:19PM - edited Jul 8, 2012 05:23PM by Ruby-

@ rose, yeah, why not kill two birds with one stone and publicize the website while you're at it.  Kinda pathetic

“The cell’s intracellular cytoplasmic sea is an ocean of symphonic motion awash with incomprehensible complexity.” Howes, M.D., Ph.D Dx 2010, IDC, 2cm, Stage IIB, Grade 1, 3/5 nodes, ER+/PR+, HER2-

Jul 8, 2012 05:19PM - edited Jul 8, 2012 05:20PM by NattyOnFrostyLake

Athena, calm yourself, dear.

Jul 8, 2012 05:26PM - edited Jul 8, 2012 05:28PM by 1Athena1

I'm just watching for your eye, rainbowpony/zuvart - I'm concerned that you might really hurt it.

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-

Jul 8, 2012 05:31PM Ruby- wrote:

"Online Defamation And Your Rights

Defamation laws and libel lawsuits are one such area and many individuals, businesses, and website owners have fallen foul of the belief that they can write anything about anybody when they are online.

In light of the increase in libelous comments governments, judges, and courts around the world have extended their own laws and regulations to include comments made online as well as in other more traditional forms of media. What Is Defamation?

The publication or broadcast of any libelous or slanderous statement about an individual or business that can be proven to be false and published with the intention of harming that entity's reputation is considered to be defamation. Online defamation is the publication of such statements made on any Internet based media including blogs, forums, websites, and even social networking websites. While many Internet users believe that they are free to say and do as they like while on the Internet, this is untrue and the same defamation laws and regulations stand for online defamation as they do in any form of media.

Acts And Laws That Govern Online Defamation

As social networking and blogging have become popular tools for Internet users to voice their opinion and get involved in discussions, online defamation cases have also been on the rise. While there are very few or no specific online defamation acts, libel lawsuits that cite the Communications Decency Act have been successfully been tried in courts around the world. Also, there are rumors that some countries around the world, especially the UK, are set to release specific online defamation laws that deal specifically with these laws.

The Communications Decency Act Of 1996

The Communications Decency Act of 1996 (CDA) was actually established to try and deal with the publication of pornography and other adult content freely and widely available on the Internet. However, it was also created in a bid to combat any indecent and defamatory content found on websites and other online publications.

Section 230 of the CDA is the section that is perhaps most relevant to online defamation. It attempts to deal with the question of an ISP's liability to content that is stored on their servers. Although it does not specifically outline all instances, it does contend that an ISP is not responsible for the information published by their users unless and until they are informed of any infringement; at this point, the ISP should act to remove the content or face legal action themselves.

The Communications Decency Act of 1996 can be viewed in full at the FCC website"

http://www.fcc.gov/Reports/tcom1996.txt

“The cell’s intracellular cytoplasmic sea is an ocean of symphonic motion awash with incomprehensible complexity.” Howes, M.D., Ph.D Dx 2010, IDC, 2cm, Stage IIB, Grade 1, 3/5 nodes, ER+/PR+, HER2-

Jul 8, 2012 05:34PM - edited Jul 8, 2012 05:35PM by NattyOnFrostyLake

Athena: With respect, does it ever occur to you that you might be wrong? That not everybody on the group is a pony? I'm concerned about you, that you imagine conspiracies where none exist. Sometimes a cigar is just a cigar.

Blessings and good night, dear one.

Jul 8, 2012 05:38PM 1Athena1 wrote:

Good night to all of you and your devices, NattyGroves, et. al.

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-

Jul 8, 2012 05:40PM bluedahlia wrote:

Natty, Natty, Natty, dear one, how the heck do you know I have a daughter and one in the field of law?

But some people without brains do an awful lot of talking... don't they? - Scarecrow, Wizard of Oz.

Jul 8, 2012 05:49PM - edited Jul 8, 2012 05:50PM by bluedahlia

I don't have to by the way........

http://www.wipo.int/about-ip/en/ 

But some people without brains do an awful lot of talking... don't they? - Scarecrow, Wizard of Oz.

Jul 8, 2012 06:12PM suzieq60 wrote:

Thing is that you are having a go at BlackCat and Thenewme for publishing info over there. However, Leah - who is one of your pals or even one of you with a new name has also posted a link to BCO over there - are you going to attack her as well?
2nd diagnosis October 2010 - IDC 5.8mm node negative - missed on mammogram in October 2009 Dx 10/13/2009, ILC, 1cm, Stage I, Grade 3, 0/5 nodes, ER+/PR+, HER2+

Jul 8, 2012 06:49PM thats-life- wrote:

I find it all so depressing. I understand the feeling of violation from members who have been ridiculed. 

It is the opportunity to build what one loves into something permanent that makes this very difficult game worthwhile. mets skull, rib, hip, spine. Dx 8/2010, IDC, 1cm, Stage IV, mets, ER+/PR+, HER2-

Jul 8, 2012 06:51PM thats-life- wrote:

A breast surgeon and a nurse arguing continuously about 'little evidence'...at least there's a little! ;)

It is the opportunity to build what one loves into something permanent that makes this very difficult game worthwhile. mets skull, rib, hip, spine. Dx 8/2010, IDC, 1cm, Stage IV, mets, ER+/PR+, HER2-

Jul 8, 2012 06:52PM Stormynyte wrote:

Geesh this again? This is a public site. The only info anyone can get about you from here is the very same info YOU put on here.  If you don't want it to be public, don't post it on a public website.

You can not realistically have an expectation of privacy here. 

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)

Jul 8, 2012 06:54PM rosemary-b wrote:

Maud if you were addressing me, it is rosemary and I am happy to promote that site, which I have not mentioned by name. I believe it is Joylieswithin who first directed people to it. Are you going to scold her also?

There does seem to be some inconsistency here.

Dx 2/25/2007, IDC, Stage I, 0/2 nodes, ER+/PR+, HER2+

Jul 8, 2012 06:57PM - edited Jul 8, 2012 06:58PM by thats-life-

I think jlw was just giving members here a right of reply, or an awareness that they are being discussed, and that their personal blogs have been advertised and linked.

It is the opportunity to build what one loves into something permanent that makes this very difficult game worthwhile. mets skull, rib, hip, spine. Dx 8/2010, IDC, 1cm, Stage IV, mets, ER+/PR+, HER2-

Jul 8, 2012 07:04PM bluedahlia wrote:

Nancy I'm not involved.  Besides there is no personal identifiable info other than that given by the posters involved.

But some people without brains do an awful lot of talking... don't they? - Scarecrow, Wizard of Oz.

Jul 8, 2012 07:11PM - edited Jul 9, 2012 05:23AM by rosemary-b

Edited because it no longer makes sense with the OP removed.

Dx 2/25/2007, IDC, Stage I, 0/2 nodes, ER+/PR+, HER2+

Jul 8, 2012 07:24PM sweetbean wrote:

*sigh*  The fighting on these boards totally bums me out.  

Dx 11/18/2010, ILC, 5cm, Stage IIIA, Grade 2, 2/15 nodes, ER+/PR+, HER2+ (FISH)

Jul 8, 2012 07:24PM Wabbit wrote:

Why is this complaint here?  The moderators of the other site are who you should be talking to if you have a problem with posts on their site.  They will then decide whether they break their rules or not.  BCO can't tell them what to do nor should they be expected to fight your battles for you.

And once again ... if you post stuff on a public site it is public.  Anybody can read here ... nothing we post here is private.  

Dx 3/2006, IDC, 3cm, Stage II, Grade 2, 0/4 nodes, ER+/PR+, HER2-

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