breastcancer.org's Mission.... or not?

vbishop

Ozzygirl -

I am reading what you are saying but my brain is not seeing it.  Can you provide an example?  Sorry - sometimes visuals work better for me.  The good news - you suggested a solution!  Whether it is one that will be adopted or not isn't the point.  Just the fact that you offered a solution is huge! 

Thanks for humoring me with an example or something.

lightandwind

v-bishop, that was cute. R-E-S-P-E-C-T

Natty, I agree that calling what another member does or thinks "ignorant" is not respectful.  It's not a respectful word, besides it's a matter of opinion. We are to provide information if we see that someone is in need of it, not judge them.

Though I believe that what others do is beyond our control, and that expending our energy to change something that is not ours, is "pissing up a rope", I can support (accept/enable) the folks here on their mission of tough love (as long as it respects others). If/when that "tough love" starts showing up as belitting, ridiculing, humiliating, ostracizing, etc. then I'm sure we'll revisit the real issue then. 

Thank you moderators for moderating this conversation which encompasses an issue that has long weighed heavy on my heart where this site has been concerned. Thanks for being here for all of us.

thanks ladies...signing off.

Ozzygirl

Here is what I am trying to say and hopefully this is a
little clearer but it is down and dirty.

For not diagnosed and applicable sub forums ONLY

User Access. - General

Permissions

Create new thread

Answer only on threads the user has
created

Access to post to other threads
within the Not Diagnosed forum(s) restricted

This would apply to All users across
the site unless Sub Moderator privileges

User Access – Sub Moderator privileges (only a term applied
not necessarily the right one)

Permissions

If a user has Sub Moderator
privileges they can answer any thread in the Not Diagnosed forum(s). Users would
have general guidelines on what to post and would need to be able to answer unemotionally
and consistently and without prejudice.

Guidelines would be in place that
they would agree to before being assigned the new privileges that they answer
based on their knowledge. Aka anyone with Sub Moderator
privileges can answer about a general lump but people
that present with IBC questions are answered by someone that is somewhat qualified
to do so aka someone that is dealing with it or has done so in the past.

If a User has had all questions
answered and it is obvious that they are trolling or may need to be moved
gently away from the site so as not to cause themselves harm then the Users
with these privileges could then report post for the Moderators to review for
possible action if necessary.

Anyhoo just a high
level idea but one that I think might help some of the issues that are occurring
with enabling and people being run off
the site that maybe really do need to stay.

vbishop

Thanks for drawing it out for me. 

Not a bad idea - it protects the integrity of the boards, provides helpful and accurate information to those that need it, and helps stop fear frenzies.  But...

From a technology standpoint, it may be too expensive or too difficult to manage.  I don't know what kind of staff or budget BC.org has, but it will definitely require some coding to make it work, then ongoing maintenance.  Is it doable? Most definitely.  Does BC.org have the budget or staff?  Don't know.

 

leggo

Anybody (well, maybe just me) that finds a lump in their breast, cancerous or not, is going to be frenzied. Not to say that your idea wouldn't work, but if I were in those shoes again, I'd be googling like crazy, probably hit on bc.org and post without reading a whole lot of rules and regulations. If it was required of me to read stipulations about where, when and how I can ask a question, I'd probably blow off that site and go elsewhere. 

Tomboy

true,leggo

leggo

My final thought on the matter....when I was diagnosed with mets back in 2006, I came across this site and posted what, looking back, must have been the most harried mumbo jumbo ever written. I don't even remember what section I posted in, but that's not really the point...at least not to me because I don't give a rat's behind if someone doesn't post in their "right category". I'm a who-gives-a-shit-life's-too-short kind of girl. NOBODY, not one single person, gave me grief. They were all so informative, supportive and kind. As a matter of fact, I will never forget the young lady that sent me a pm that night asking if I was better and to tell me goodnight. She probably doesn't even remember, but hey, a shout out anyway to NaughtyByNature who made me feel like everything was going to be o.k. and I wasn't going to not wake up in the morning. What happened to those days? I actually know when the paradigm shifted (to the day, actually), ...from everyone being kind and helpful to sometimes just being plain nasty. 

Is it so bad to want those days back? Why do we have to have so many unwritten rules just to satisfy a handful? Why are they special? Everyone afraid of them or something? Afraid of losing the popularity contest? Band-wagon jumping?

Bring in more rules, written or unwritten, and I think you may lose many more members. That would be sad. Those who were alienated last time were the ones who helped me the most. 

Just my thoughts.

leggo

And, if we're all going to get what we each want....you know those people who can't fight the urge to correct someone about every single little thing? They personally drive me up the frickin' wall. I want their posts monitored and restricted.  A girl can dream. I know, final thoughts mentioned in my last post. For sure this time. Peace.

Ozzygirl

Leggo good point but I think I may not have clarified it enough.

From a user standpoint they can sign up and go directly to not diagnosed and create a thread just as they do now and they can answer questions in that thread they started just as they do now.

They start the thread - no issues, post on their own thread again no issues.  Start another thread no issues etc.

Try to post on another thread within that forum or sub forum of not diagnosed that they themselves did not start (trolling, panicking etc) then there would be a message displayed that they cant do so with the applicable nice language. The user would not have to read or agree to any stipulations as it would be dynamic to them.   The controls would be within the code and invisible to the user until they tried to post on another thread that they did not start in not diagnosed.

The people answering the questions would be the ones that would have to understand what the stipulations on answering are and they alone. Remember the folks answering would be a select group and not the whole user/member base. If a non selected user tries to answer a question then they too would see the same message about permissions.

VBishop understand on the programming but it if is vbb or something similar it should be able to be done fairly simply with the controls that they already have in place for user ids. The only issue I am not sure of as I am a tad rusty is the permissions within the sub category of posting privileges within a specific forum.

Hopefully it makes sense. This idea if possible would also work on the sister non diagnosed breast issues side that I proposed earlier on in the thread. Adding yet another layer of "containment". Anyway again it was a suggestion and will leave it at that.

Ozzygirl

Yes Leggo I remember those days too. I remember waaaaay back when it was just threads no categories no PMs. Just a bunch of women that were here that probably saved the sanity of a whole lot of us. I remember one of the very first Angels and I cried for days as she was one of the people that answered questions with no malice and heck unless you read all of her posts you would never have known she was fighting so much at the time. She certainly saved mine.

 There were no social threads and it didn't matter one whit how many posts someone had because initially they were not even displayed. I also remember some of the weirdest crap that was posted, there were unimaginable photos and there was no way to report posts.   BC.Org has come a long way since then some of it good and some of it not so good but understanding the sheer size of what it has become I understand why it has changed the way it has. 

But the enduring thing is that they ARE here and for that, I am forever grateful.

leggo

Sorry last time. I have a good excuse though, I was typing prior to your response Ozzygirl. I politely disagree with "Remember the folks answering would be a select group and not the whole user/member base". The beauty of this site, I think, is that you have access to so many members and their individual responses. As I posted earlier, it was a non Stage IV gal that talked me off the ledge. If we restrict anyone, perhaps some wouldn't have access to a few kind words that could possibly change their perspective, and believe me, mine needed to change. I can't express enough how much I dislike the divisiveness that has already taken place over the years. To make it more so would be a mistake. JMHO.

leggo

Cross-posting again. Amen, to your post above, Ozzygirl.

Moderators

Thanks for getting the discussion back on track
in a constructive manner. Just reiterating, we believe we understand the
issues, and we will be discussing the points suggested as a team.

Regarding multiple layer of member rights, vbishop , yes you are correct in that setting something like that up, let alone trying to manage such complexity would be impossible with the number of members involved. However Ozzygirl, thank you for your thoughts and suggestions, but it would not be productive to create such a hierarchy, though we do appreciate your input. 

Leggo, yes we have enough rules already and what was important to you was rule number 2: "You agree to introduce yourself, greet newcomers and make them feel welcome, and to remain respectful in all interactions."

As moderators it is very difficult to police but we try our best.

Tomboy

"but the enduring thing is that they ARE here, and for that, i am forever grateful" ......a hearty me too, oz

thenewme

• You have triple negative breast cancer - You'd be better served by alternative treatment since conventional treatment is not effective for TNBC!  
• DIY: How to treat your own fungating breast tumor!You need to be taking X mg of curcumin or iodine or baking soda or whatever!  
• Buy "natural" hormone replacements to treat any hormonal symptoms.  Safe and effective, available online at suchandsuchDOTcom !  
• Never mind what your doctor says - keep shopping for a doctor who will indulge your every fantasy and perform any and all tests you want!  
• There are research studies that show cannabis can effectively treat or cure cancer!  
• Coffee enemas and blueberries have worked for my aggressive TNBC breast cancer and I'm currently NED!
• You don't need a doctor - you can order your own blood tests online and diagnose yourself!  
• You don't need an MD - naturopaths or "naturopathic oncologists" treat you holistically and have proven success in breast cancer treatment!  
• Your left breast cancer was caused by you having emotional issues with your mother during your childhood!
• I've PM'd you some private/secret information about some treatment options your doctor won't tell you about!
• I had my IV Vitamin C injection and I look and feel great, which proves it's curing my breast cancer!  
• You don't need chemo or radiation or surgery - just suck on a lemon to adjust your pH and your cancer will disappear!  

"Our mission is to help women and their loved ones make sense of the complex medical and personal information about breast cancer, so they can make the best decisions for their lives."

How does that mission statement jive with the above (paraphrased but actual) posts that appear here on BCO almost daily?
[EDIT NOTE: These above comments have been struck through to stop propagating such bad advice in any searches. Normally we would delete such as these when found, or reported, but we are allowing them to be here so poster's point can still be made, and read in full. The Moderators ]

How does the advice from BCO mods to "block the poster or ignore it and don't post contrary information" help make sense of complex medical information?  

How does promoting a false balance between evidence based information and nonsense help patients make good decisions for their lives?  

How does squelching rational/respectful discussion (including both sides of any issue) help a patient discover what she/he needs to know to make informed choices?

Combining National Enquirer type "information" with PubMed type "information" as if they're equivalent and deserve equal consideration, does no breast cancer patient or potential patient any good at all.  As someone said earlier, it only dilutes and devalues BCO's message and mission and I think that's a terrible disservice to all.    It's no longer a valuable source of reputable, reliable and helpful information and that's why I don't recommend BCO anymore and also why I don't visit much anymore.  Tragically, BCO's stated mission is very different from its end result.  

River_Rat

Well stated, thenewme.

Moderators

thenewme, unfortunately, this is the nature of
community/user-generated content. It is unrealistic to fact check each post and
discuss with the respective member. We receive an average of 1,200 posts daily.
We were very aware of this issue 13 years ago when we started the discussion
boards and because of this, have many safeguards in place. We have tried to
inform members BEFORE they register that the discussion board content is very
different than our professionally vetted content. Here are a few examples:

1. upon registering for our discussion boards, each member
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joining.

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Breastcancer.org does not endorse, and specifically
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6. Editing original post to add that if a post says something to the effect of what you typed above, it would be immediately deleted or edited.  (e.g. You don't need a doctor, You don't need chemo or radiation or surgery). 

Thank
you,

The
Mods

nihahi

Duly informed, mods. I guess, when I first joined the bco site, I wasn't in the frame of mind to go through the "legal speak" of the guidelines, rules and bylaws. My need was to reach out to bc women going through similar journeys. Your post clarifies many....MANY...issues.

thenewme

Yes, Mods, I understand the community rules here and I certainly understand the nature of the internet, user generated content, etc., etc, etc.  And yes, I have read the rules which really aren't much more than legalese stated to minimize or eliminate your liability with regard to medical information.  

However, none of that addresses the concerns brought up on this topic about the *mission* of BCO,  or anything in my post specifically.  How do the examples I and others have posted above fit into your rules and your mission?  

I certainly don't expect or want every post to be officially vetted or fact checked.  What I would HOPE and wish for this site is that it would live by its stated mission:    "Our mission is to help women and their loved ones make sense of the complex medical and personal information about breast cancer, so they can make the best decisions for their lives."  In my opinion BCO does not live up to this mission, and even worse - BCO doesn't appear to even believe in its mission,  as made abundantly clear to me by this and other "official" BCO posts, statements, and actions.    

Moderators

Thank you for your response Nahahi, we appreciate that when first joining, your priority is posting your 'burning question' or respond to another post. However, our Rules of Conduct are important to follow, and we probably need to somehow have Members read them to refresh their mindset. Glad seeing above clarifies it further for you and may it do so for others too.

The Full Community Rules are easily accessed on BCO at this PAGE

The Moderators

luv_gardening

I've been offline or away for a couple of days and have read or skimmed through some of this.  What stands out to me is:

1) People who are of either a) lower intelligence or intellectually disabled,  b) lacking in plain commonsense c) suffering a mental illness with psychosis or delusions, d) have diminished thinking skills due to age, dementia, past alcohol or drug abuse e) Munchausen's or attention seekers...  somehow are harming others on BCO and need to be segregated, limited or expelled to protect others.  Apparently these unfortunate people are not deserving of our respect, sympathy or support.  A minority even believe that ridicule and insult are acceptable ways to deal with such people and I'd be happy to quote some un-moderated ridicule if anyone doubts this.  In a professional setting this sort of attitude from staff or helpers would not be tolerated.   What's that saying? A society can best be judged by the way it treats its most vulnerable members.

2) The belief that other members are being harmed or diminished by the above vulnerable members of society. The average person must surely realise that information on the internet must be taken as opinion only, unless it's from a reliable source.  The mods have covered this in the previous post.  The main BCO site has reliable information, the forums are simple people exchanging ideas and providing emotional support.  Forum members come from all backgrounds and I fail to see how some can be more deserving than others.  No one has walked in another's shoes.

I have more points but must get ready to go out.

----edited to correct a silly spelling error .. rave / have.

Beesie

Mods, I think the issue for me is that it used to be much easier for other posters to address the types of things that thenewme mentioned.  Not so much anymore.  

Now, if something like that is posted in the Alternative forum, we get chastised for entering and posting there with anything that is not fully supportive of the particular alternate treatment in question. In the Not Diagnosed forum, women are advised to "trust their gut" and not their doctors, and told to keep doctor shopping until they find a doctor who is willing to do whatever test or surgery it is that they want - and if you dare offer a different opinion on that (as in "maybe the 3 doctors you've already seen are right"), you are either told you are not being supportive, or more likely, you are just ignored. 

It reminds me of the argument I got into with someone (who didn't even have breast cancer) who came here to let everyone know that root canals lead to the development of breast cancer and everyone should get their root canals removed.  There were women who were actually taking that advice and having their teeth with root canals pulled. The discussion was in the Alternate forum so I was strongly told that my comments (that "there doesn't appear to be any reliable data to support the theory that root canals can lead to breast cancer.") were not welcome. I was told that I "was a disgrace".

It's true that everyone should read the rules and understand what they are getting when they come here, but the fact is that many women come here asking "what should I do?" and they assume that what they are being told is factual and accurate.  I have been here a long time, and I have seen many women swayed in their choices based on what they've been told.  Often that's for the better (encouraging someone to have a treatment she needs, or pass on having a treatment she doesn't need), but sometimes, not so much.

thenewme

Re:  "EDIT NOTE: These above comments have been struck through to stop propagating such bad advice in any searches. Normally we would delete such as these when found, or reported, but we are allowing them to be here so poster's point can still be made, and read in full. The Moderators ]

Mods - while I appreciate you not deleting my comments as has traditionally happened, I'm gobsmacked that you think my post is "propagating bad advice" more than, for example, an ORIGINAL thread topic called "HOW TO TREAT an ULCERATED BREAST TUMOR???"  Really?  Did you strike that out too - you know, the post where it actually promotes this as if breast cancer is a simple DIY project?

I will not comment on this particular person's situation for many reasons other than to say I  think we all agree that she definitely needs help.

How-To's and DIY breast cancer diagnosis and treatment are posted here daily (despite BCO rules against providing medical advice!) without allowing any rational discussion or differing viewpoints and certainly without mods striking out the text.  I'm all for choice in medical decisions, but why and how does this preclude offering discussion, relevant facts, and differing opinions?  

MODS - Please go to Google and do a generic search for "ulcerated breast tumor."  What do you find at the top of the search, but a DIY on how to "treat" it yourself, and it's not my post that shows up.  Do the same for all the other examples I gave above.  THAT'S what people outside of BCO are seeing represented here, and that's why I say BCO is not living up to its mission.  

DiveCat

I too am baffled as to why newme's text was struck out to "stop propagating such bad advice in any searches" when that is exactly the same advice that we are supposed to accept without room for discussion (lest the poster be attacked for being judgmental or unsupportive) on the forums and that is actually not "normally" "delete(d)...when found, or reported". Indeed I just read a thread where a poster looking into natural "drugs" like wormwood or baking soda for his wife has been told by another poster to "please block anybody who tries to attack you and your wife's decision" as they "will try to warn you off but don't be deterred" and was also warned off an NCI-designated centre at the same time for "(having) been caught in questionable practices burying evidence". 

This is without any info from OP on staging, node involvement, hormonal status, whether his wife has had surgery or other conventional treatments and what treatments...not anymore than saying they have been fighting with all the "usual ways".

No room, once again, for discussion, questions....all will be an "attack". 

thenewme

Thanks, DiveCat, for the perfect example!  I'm at a loss for words.

Moonflwr912

For the Moderators, suggestion on how to get people reading rules and regs. After they sign up, they cannot post til they have read them. They can lurk, research, read but not post. After reading the rules then they are allowed the first post. 

I came to BCO after my BMX. I was amazed at all the information available. I was also thrilled to find help from so many women and men with BC. A flame war was going on at the time and almost made me not come back. However I did stay, found a few threads to hang with. I am 2 years PFC and stay on the tx threads to help newbies. I had a lot of trouble with TES and stayed there to to share.  I occasionally check out the alternative threads just to see what's going on. I am always curious. I have my favorite threads and a few are social. I like them as well. Will I be here in 10 years? Who knows. But i will be here as long as I think I can gain more knowledge and help out a bit. 

I understand the concern about newbies not understanding how the info is gained and gathered. All anecdotal or verifiably researched. But it is really up to people to make their own decisions based on all the info available to them. We all have to constantly make decisions on what to believe about things in everyday life not just BC. BCO has a responsibility in its informational section to be sure the info is correctly quoted, or reported and up to date.

On the discussion board - it's a discussion. People may make mistakes, and they might tell outright lies. I think a more thorough disclaimer might help. Perhaps an article on how to check on information rather than blindly believing it, might be appropriate, as it seems people have not had to think  or make those decisions for themselves anymore.

I will try to give posters the benefit of the doubt once or twice. But i will not keep banging my head against the same rock. I like my head to much! LOL.  So sometimes I leave a discussion. My decision as an intelligent, involved person.

Much love to all. 

Moderators

The issues have been well laid out. Now for constructive solutions and suggestions, short of shutting down the discussion boards. 

(Moonflwr912, actually each member does need to click "I agree" to the rules before entering. I think many must just click, and not read, but we sincerely thank you for your suggestion.)

The Mods 

DiveCat

No problem newme. I saw another example this morning where an OP, concerned about breast changes during pregnancy and thinking it was IBC, has been told after a negative punch biopsy that showed her skin changes to be hormonally related not to take the results for granted and to get "all the biopsies she needs to be sure".  

She has seen a breast specialist (who said it was not IBC), had an ultrasound (which showed no concerns), another breast specialist (who said it was pregnant related), a dermatologist, and had a punch biopsy. It would had malpractice for a doctor to keep ordering unnecessary biopsies. 

The OP clearly has a lot of anxiety, and telling her to "get all the biopsies she needs to be sure" is fuelling the fire. Someone with anxiety may never be "sure".

DiveCat

Mods, 

Honestly, I don't know what to do as I think the mission needs to be clarified. Which I believe was Beesie's point in starting this thread. There can't be much constructive recommendations without knowing the mission.

In the meantime, now that I know you don't want "bad advice" to show up in searches, what I WANT to do is to report all those posts that I consider "bad advice" based on context of what you crossed out in newme's post and allow you to decide what to do with them and whether or not they are "bad advice". As an example, I am going to consider advice like I saw this morning from a man whose ex-girlfriend is "cured" of breast cancer to "stay far away from doctors/screenings/the media" as that is "the smartest thing a person can to to protect and maintain his or her health", and to instead choose apricot kernels, to be bad advice, but I guess I shall let you determine that. Again, this advice is given without any information about the OP's wife's cancer or treatments itself other than it is breast cancer. In the meantime, the reporting guidelines don't actually allow me to report "bad advice" as it seems to me it falls into "comments which simply have a different viewpoint" so I am at a loss:

Please report any violations of our Rules of Conduct, including:

• spam
• solicitations to buy products
• threatening, abusive, or hateful comments

Posts that are NOT inappropriate include:

• comments which simply have a different viewpoint as your viewpoint
• moderator-approved solicitations for interviews or events

lightandwind

It's a discussion board. No one here is authorized to give medical advice. It's not our job. We're just posters w/ breast cancer. We can't be so dogmatic or unrealistic to insist on limiting information that we are restricting the information that may help someone. Some people are alive because of alternative tx.  Some people can't do conventional or are out of conventional options. To imply that standard of care will save people, is providing false and unreliable information.

Also, the alternative forum is for people who believe in and choose alternatives, not for people who don't spend any time researching them because they would rather come there to judge people who don't use conventional treatments. Members feel duped when the go the alternative forums only  to hear conventional members chitchatting about their prejudices against alternative medicine. Then the forum becomes yet another forum for conventionally minded people. Conventional forums take up almost all of the discussion  boards. We need to exercise tolerance for people not like us. 

Good advice, bad advice is a matter of opinion. 

IV vita C has some good research and some people with cancer may benefit, but they may not ever consider something that may significantly help them  if the only people left on the alternative forum that post just  trash it without ever even reading the positive research. It would help us all  to stay up with the times and be open to all kinds of info. 

The world is changing, medicine is changing, and bco.org is changing.

We can learn something from everyone...or not.

There is room for all of us.