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

abigail48

been going on since the fall of 2011,( on the locked & disappeared forum) for undagnosed people who wish to use only alternate therapies

abigail48

It's been going on since the fall of 2011 on the locked & disappeared forum for undiagnosed people who wish to use only alternative therapies. thought I posted this awhile ago, perhaps the mods disappeared it because of the mention of that forum, or perhaps I neglected to post it 

Beesie

"Basically,
what these books are telling us and what these moderators need to hear is we,
as a society need to know when to stop encouraging behavior that soothes
one's ego that can potentially do
harm. As a result of our wonderful ability to encourage everyone,
society now demonizes those of us who promote common sense! Common sense now
takes a back seat to empowerment and empathy.."

VR, thank you.  That's the exact issue here.

Abigail, and those who are posting about your situation: 

THIS.  THREAD.   IS.   NOT.   ABOUT.   YOU.

I started a separate thread in a different forum specifically so as to not hijack your thread and because I wanted to raise a much broader issue.  Your situation is just one of dozens of examples of this issue and it came into play here only because I started off by using a quote from the Moderators that was from your thread. PLEASE SHOW ME, AND THE OTHERS WHO WANT TO HAVE A MEANINGFUL DISCUSSION ABOUT THE TOPIC THAT I RAISED, THE SAME COURTESY THAT I SHOWED YOU AND MOVE THE DISCUSSION ABOUT YOUR SITUATION BACK TO YOUR THREAD.

exbrnxgrl

Beesie,

My apologies for having derailed this thread with a comment or two that dealt with a specific person. Why I keep getting sucked down that rabbit hole, perplexes even me. Apologies again and thank you for this thread.

Caryn

Anonymous

caryn -  "Why I keep getting sucked down that rabbit hole, perplexes even me."  Suggest, it's because you are a kind person and feel sorry for someone who you THINK you might be able to help.  The way this thread has been HIJACKED even tho Bessie SPECIFICALLY started this thread to deal with a DIFFERENT ISSUE is another example of how useless it is - give yourself a break - and LET IT GO.

Or as someone might say, "there ain't no cheese down that tunnel" - try another... many women WITH bc who could benefit from your intelligence, experience, and empathy.

Maybe Bessie can start another thread, to discuss what she INTENDED to discuss, and it won't get hijacked.  And it wasn't YOU who did it.

Just PLEASE give yourself a gentle pat on the back for trying, and LET IT GO!  thanx.

exbrnxgrl

sunflowers,

Thanks   I think I'll focus on more important things like the Yankees game I'm attending this evening, a nice cold beer and seeing Derek Jeter play one last time (they are in Oakland only once this season). Now, I'm really hijacking the thread!

Caryn

lightandwind

This thread was an offshoot from the thread that abigal started. There's even a link there to this forum on her thread. It is/was where and how this discussion began. I think abigal can post here if she wants to as the topic pertains to her and her situation. Why tell her she cannot post here? No disrespect to you Beesie, but anyone can post on any thread that they want. Right?

Tomboy

beesie,i am sorry that i talked about it, it might have been me that started talking about it. i really dont want to go back and read the whole thing over, so please please accept my apologies many times over. You and voracious reader have both said it very well. i did read otis brawley's book, even before i was diagnosed, and wished i would have a dr like him. we need more of them, and now i am intrigued by david mccullough's commencement speech that turned into a book too, and will go get it. i wont talk about the other here again, i get you.

caryn, just is true is what sunflower said.

barbe1958

Voracious, I LOVE just the titles of those books!! I will definitely be searching them out. So many people grow up thinking they are entitled. It just stuns me. Then of course, there is the dumbing down of "America" (I include Canada in that, as we are North Americans, too). Of course, common sense and common courtesy exist no longer.....

I love it when we are told to "respect someone else's opinion" and then slammed for posting our own opinion!! Starting a thread does not mean you "own" the topic and only your opinion matters. (This is NOT referring to your thread, Beesie, I am simply trying to get us back on track.) This is a DISCUSSION board people. That's what humans do. Repartee. Conversation. Back and forth. Agree, disagree.  

lightandwind

yeah I hate that too when someone keeps posting where they are not welcome, especially like when these women took over the alternative forum. 

Beesie, about that  common sense, to stay on topic- In regards to sharing common sense, What is the most appropriate and respectful way to communicate that common sense to someone in this situation?

exbrnxgrl

barbe,

There is hope... For several years, my school gave a monthly award to a 2-3 students in each class based on a character trait, patience for example. It became clear after a while that these awards were meaningless since every got one over the course of the school year. Even the parents thought they were pretty meaningless and dubbed them the "you are receiving this special award because you exist" certificates. The students realized they had nothing to do with any accomplishment or even effort. So in the end, something that had been introduced to make everyone feel valued, had no value at all. We have since abandoned the practice.

lightandwind

Let's stay on topic please.

exbrnxgrl

Yes, m'am! As you wish. Derek Jeter, cold beer, the Yankees, meaningless awards and my never failing sense of humor are preparing to exit. Wait! I think I just figured out why I have remained NED for so long. I think it has to do with finding the humor in almost any situation:)

Tomboy

Sorry, is lightandwind one of those undiagnosed but worried, "encouragers of other women? my bad, i'm leaving.

Beesie

Of course anyone can post on any thread.  I did not suggest that anyone not post here.  I requested that this thread not be hijacked and turned into yet another thread about one individual's very specific situation, a situation that is being thoroughly discussed in another thread.   So many of the posts today have been about this one individual and how that situation evolved and who did what and who said what. That completely misses the broader point that I have tried to make and that others have tried to engage on.

The people who are participating in that thread may have valuable inputs to the more general topic that is the subject of this thread. 

Of course someone can choose to be rude and ignore my request.  This is a public website and anyone can post whatever they want.  I certainly understand that.

exbrnxgrl, humor is always welcome!  

(By the way, those who know me from my 8+ years here know that I've always been frustrated when threads get hijacked and the OP's questions or issues get pushed aside by other posters for some other discussion. It's not a question of whether it's my thread or not.  But that's different than when a discussion follows a natural flow and moves on to other subject or points.)

leggo

Hi Bren. I've always admired your diplomacy. I think I lost that trait somewhere down the line.

lightandwind

Beesie, while I can understand you wanting to stay on topic, I have to say that I think you have again not been so kind to abigal as your topic does pertain to her situation,  and how to communicate with people in this sitaution,  and she was posting how she had felt mistreated by the way certain members on this site, and on this thread had communicated to/about her...for years....and then you just blew her off, shooed her away, told her to just go back to her own thread, then suggested that she was disrespecting you. How so?

So, back to the broader topic, hypothetically speaking, what is the most appropriate way to communicate your common sense to another member in this situation? At what point should we "confront and deal w/ the truth"?  :

Also, my answer to your question regarding encouraging. "Is it okay to encourage?" Personally, I don't want to tell someone to do anything, because the truth is that I nor anyone else can tell them what the outcome of that choice might be. But for these kinds of cases, I would try to build some kind of a genuine, supportive, respectful rapport and provide information in a gentle and respectful manner as I did. What I think is not okay in these situations, is to pretend they have no real problem, accuse them of faking, make fun of them on various threads-for years, tell them that you will never respect them or their choice, tell them that they just have a nasty boil, imply that they don't deserve empathy, tell them that they don't belong here, etc.

TB90

If the goal is not to support individuals where it can potentially do harm, then I would suggest that people do not post on those forums as the OP's appear to thrive off of the attention and controversy.  I made the mistake of encouraging exactly what I was trying to avoid awhile back with the Amy Robuck thing and have learnt the hard way that attention brought upon some issues simply promotes the issue.  I fear that is what is happening here now. 

Anonymous

Beesie, it was very thoughtful of you to BEGIN this thread, leaving another thread so you wouldn't highjack it.  Sorry that regular posters on that previous thread have followed you to this NEW thread in which you were TRYING, TRYING to address another subject completely.

Narcicissim, as VR as eloquently posted, is alive & well - but really, Munchausen by Internet is more amusing. Thanks to the one who first introduced us to that one.

Caryn - I hope YOUR TEAM wins, as long as they aren't playing at Fenway Park....

Bessie - you really are a trooper!  Thanks.

Tomboy

once, at my very lowest point in my life, i had myself convinced i had rabies, because i really wasnt bathing, nor drinking water. i got better.

Anonymous

kathec - fabulous, remember to tell larry.

lightandwind

Interesting TB90. Knowing that someone has dealt w/ a breast tumor for years already by ignoring it, it would seem irresponsible to not try to at least engage them about options, other than just ignoring it. Ignoring someone could lead to worse trouble down the line. At least if you have a rapport, you can check in with them, and see if they are ready or willing to see a doctor, discuss options, share information, etc. If you ignore them, make fun of them, deamean or criticize them and their choices, etc., then I think that would feed their resistance to seeking medical advice. This is "common sense" to me.

TB90

Light:  And how well has that been working for you? Has she made any advances?

Ariom

Beesie, as always, you are the voice of reason.   I don't mean to hijack, just to comment on the overall subject on both threads, now that they seem to be blending.

I am sorry ladies, I have wanted to stay away from this argument because, although I have read it all and see great common sense, compassion and wisdom, from so many of you, I have to say, I feel your efforts are futile, on this subject.

It is one of those times, in my opinion, where it just has to be, an agree to disagree situation. There will never be a resolution and the angst it is causing, isn't good for anyone.

We have a saying over here, when trying to convey common sense to another, who is resisting, is like "Pissing up a rope!"

lightandwind

TB90, She has said she is pursuing her medicare and will be seeing a doctor. It's her decision. I don't take any credit for it. I've only had a few conversations with her.

Ariom- I agree with you about the angst and "pissing up a rope" is what I have been doing here. Agreeing to disagree. 

Bye ladies, Please be nice to people. Peace.

mebmarj

I've been around the boards for over 10 years, more often checking in, not always commenting, when I was going through treatment.  It's been very helpful at times.  It does seem the tone has changed over the years, but then so has the world.  

We live in a world where there is instant gratification, people think they know more than professionals all the time and the customer is always right.  But we know that's not always the case, right?

(I don't post my diagnosis for various reasons, so for anyone looking at my number of posts or wanting to pass judgement, go ahead- fire away.  Just FYI, yes, I've "worn the shoes" twice and wouldn't wish cancer on anyone.)

That said, adults will do what they want, no matter how hard you try to help, advise, redirect or otherwise assist them in their dilemma in any part of life.  That old phrase about leading a horse to water and then it won't drink?  Bingo.  The internet is unable to examine your specific problem, so why in the world would anyone just depend on it is beyond me.

I would gently advise anyone, sure look up information on the web, but seek medical guidance with a provider you trust in matters of health, that goes for anything you might read on the boards as well.

Ozzygirl

This kind of stuff has been going on for a long time even way back in the early 2000's. Its not going to stop. I have seen some horrific accusations and also faked stories over the years. I have seen people beat their heads against the wall over similar posts on the other thread.

This is a public website on the interwebz and there are no filters or "Vetting" that happens before someone joins. There always will be (and there are always has been) people that hang around with no diagnosis and then there are the truly evil people that fake having cancer. Its not going to change. 

I understand this is a site for support for cancer but I also understand the stance of BC.org on breast issues.  We absolutely should not block people from asking questions who might not be diagnosed yet.  We also cannot say go away you don't have cancer. Some of these people actually end up in our shoes. Some folks post here get a response from the member base and then feel confident that they are not dealing with breast cancer and move on. I would rather see this than someone fretting out of their minds for weeks waiting for tests etc. Some will find out its nothing to be concerned about but will hang around for a long time. Some even fake a diagnosis because they like the attention. 

When I was diagnosed back in 02 there was shit all on the net other than scary statistics and one or two websites one of them being BC.org. What did most of you do when you were diagnosed or were waiting for tests? I bet a lot of you surfed the net and probably even this site.  I respect BC.org wanting to be there for people who may end up in our shoes. 

I also appreciate the comments about when is it time to cut the ties. If someone is definitively not dealing with cancer at what point does it become unhealthy for that person to no longer post here ? How would you even try to verify it? Maybe the solution is to have the not diagnosed yet section spawn a mini a sister site that is separate from the main site so as to make it less tempting for people to jump around the other diagnosed threads. But who is going to take the time to answer all the newbie questions on a sister site?  I see a lot of you that truly help people on here but would you do the same for a separate forum?This also will not stop the trolls or people that feed off of attention.

This is BC.orgs website that we access at their discretion. They have made many changes over the last 12 years and although I personally may not have agreed with all of them they have made the site a better place.  Sometimes things are a business decision and sometimes
there are things happening behind the scenes that we are not involved
in. Yes, money plays a part it always will. If there were no money then there would be no site for us to get support or connect with others. It is a fact of life. This will never change It is their sandbox. 

Moderators

Dear Members:

This is an extremely important and interesting conversation. We appreciate that many of you have provided thought-provoking perspectives on our organization, and mission. While BCO is primarily focused on women and men with breast cancer, we are committed to making space for those who are not yet, or may never be diagnosed with breast cancer; children and relatives of individuals diagnosed, individuals who are at high risk, individuals with known benign breast conditions (as these can become cancerous), friends, family, caregivers seeking information and advice, and those attempting to reduce their risk of developing a breast cancer. 

We attempt to provide appropriate links to our professionally written and vetted content on our site to guide members and readers, and naturally try to serve as a source of emotional support. We have clear rules, and comprehensive disclosure statements. It has not been our objective to impose time limits on how long members - diagnosed or not diagnosed - can stay active on the boards. We sincerely try to respect the individual's unique needs for information and comfort. All that said, we appreciate that you have made your positions clear, and we are listening. Our moderator team, and organization in general, will take the time to discuss your comments. Thank you for your valued input.

The Breastcancer.org Team

Anonymous

bessie - guess that answer's our questions - $$$$, "hits", advertising revenue for large salaries why else include this or may never be diagnosed with breast cancer; as part of a "mission statement" - another way of saying we want ANYONE & EVERYONE to log on...now we know where the "membership" #'s come from  thanks for your pm...we were both accurate, and observant of what ozzy says, "it's their website"

Kathec - here's to dictionaries for diagnosis, :-)

barbe1958

When I first joined back in 2008 there were almost 42,000 members and yet when I was googling away, this forum came up time and again so I checked it out and was glad I did. That was with less than 42k members, all of which were not active, I'm sure. Now with over 100,000 more members, I'm not sure that trying to get hits is what is changing anything. I think those growing numbers would show any potential financial supporter that there is constant growth. I do know, that a lot of us were offended when advertising first appeared on this site, but now we're kind of used to it as a necessary evil.

I think that with the RISK of breast cancer so obviously being promoted in the media with Applegate and Jolie, it has drawn more women to google the topic which has caused this website to be "hit" more often and more and more members are being created where they just need info and not advice or direction. Perhaps there should be yet another topic of "SCARED OF THE RISK? ASK HERE", just like the Stage IV thread created so the tough questions can be asked OFF of the stage IV threads. 

Maybe there has to be better vetting or an explanation upon attempting to become a member that this is a SERIOUS forum for the talk of breast cancer. Maybe new members shouldn't even be allowed the 5 posts (is that still in place?) but a period of TIME before they can post so they can search out the topics they want before just starting a new topic that has been answered a million times already. That would force some research on this forum before they can post. Then their questions could possibly be answered by a previous post, they would have calmed down and realized they don't belong here (yet) or they have stayed and have a better focus and a good direction on how this forum works.