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

lightandwind

It seems that it is assumed that Abigal has been encouraged to look the other way and not see a doctor, but many of us have tried to get her to see a doctor. Encouraging her to see a doctor or not see a doctor, is not at all what this is about. It is about respecting her. 

The post I saw of Yorkies, Selena's, and exbnx, mardibra, etc., on this thread and other threads is ridiculing and is downright mean, and if these women have been so concerned then why haven't they been trying to engage her kindly about the issue, and doing it much sooner? They have fouled over and over and over, especially where abigal is concerned, but prior to that, they were doing this to whoever came to the alt threads and taking up the threads for their own chitchatting, disrespecting those who use alternatives. Mods, you said that this was not what the alternative thread was for. You then set the tone for providing that space for alternative minded folks to talk and share information without intrusion, which I very much appreciate.

I like the idea of respectfully providing info, but when I see  the disrespectful tone from these several ladies towards abigal, I cannot look away and just push my ignore button.I can only push my report post button. I would not do that unless I felt someone was being harassed. If people can't come to the alternative forum and disagree respectfully without chipping away at other person's dignity, then I think they should be banned from the site altogether.

It is about respect, and I do respect anyone who has to make a choice about a breast tumor. If I don't like their choice, agree with their choice, I still respect them, and respect that it is their choice. 

To me it's not about breastissues vs. breastcancer, it's about someone w/ a tumor that needs caring repespectful input from others.

voraciousreader

Beesie....you and many sisters here know how much I enjoy bringing books that I've read into various discussions, so I hope you don't mind if I give everyone my thoughts about this issue using themes from some important books that I've read.....  

First off, I think what you,Beesie, are describing is a problem that is epidemic and is systemic throughout society.  Jean Twenge describes this epidemic in her often quoted and often footnoted book, Generation Me.  Otis Brawley, MD, also touches on this epidemic in his fabulous book, How We Do Harm. And, most recently, David McCullough,Jr., who's viral commencement speech was recently expanded upon in a great new book, tells us in the title, You are NOT Special,  which is a call to arms to fight this paralyzing epidemic.

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. 

Beesie, what you have so eloquently pointed out, has become an alarming epidemic.  I, too, have been chastized when I've called out women for their unrealistic views and opinions about how their physicians should be treating them!  Dr. Brawley devotes an entire chapter to an seemingly "intelligent" woman who goes on a doctor shopping crusade.  I can only image the supposed "support" she received along the way!

Sadly, Beesie, I don't see an end to this epidemic. It is pervasive throughout society and its negative effects can be seen all around us.  Students that cheat....businesses like Enron who cheat...Bernie Madoff....and the entire cast of characters who invested with Bernie who knew it was "too good to be true"... But it is with our own health, where by far, we see this potential to create an environment where common sense is CRUSHED.  Since when has empowerment and empathy usurped common sense?  

Society needs a big dose of common sense to eradicate this disease! Sadly, it can't be manufactured so easily!

lightandwind

Again, it is about respect. 

lightandwind

Where were all the women with "common sense" that could've gotten abigal to see a doctor sooner? what were they doing to try? making fun of her on the vain thread? 

At least I tried.

pip57

Let's keep in mind that the subject we are all referring to has been here saying the same things for a very long time. It would be nice if she were to spend her time on the AIDS boards to let them know how she cured herself of that disease.  Not once, but twice!

Anonymous

Beesie - are you old enough to remember the phrase "follow the money."  that is what it's about.

lightandwind

If I am lucky enough to live to be 80 years old and say things that don't make sense to others, I sure do hope people will respect me and not ridicule me- behind my back and in front of everyone, but there's another epidemic that says that they will.

MelissaDallas

It's not about you, or the other member Lightandwind, it is the the good of the community and what other women take away from it.

abigail48

I think the hiv just olded out as does many troubles, perhaps not this one, but I ask, how many of us have been mis-diagnosed by "reputable" conventional physicians.

Anonymous

Beesie - ya gotta be howling with laughter now. Ask Larry.

eta - thanks for trying Beesie, I'm outta here

lightandwind

I am all for the good of the community Melissa Dallas. That is why I am here.

abigail48

& if I thought I could survive surgery I might have seen a docktor when this first appeared, march 2011, if it was ever operatable, which I doubt.  my last surgery when I was about 20 years old, caused such hemmhoraging the next day that I needed to be rushed to the docktor to stem it.

nihahi

Well, Beesie.....you tried. I understand the point of this thread and I appreciate the few posters who tried to stay on topic. Sadly, IMHO....it has become another avenue of chasing down those who don't agree on another thread, and continuing that dialogue here. This conversation was not started on this thread to discuss one member. It is a shame that is not respected. 

voracious....thanks for listing those books...sounds like interesting reading, and I'm definitely going to see if my library has them. 

exbrnxgrl

Beesie,

Thanks again for your eloquent, concise and spot on words.

Caryn

lightandwind

Where were many of you for 2 years if you wanted to help this person w/ a breast tumor? You were making fun of her, telling her she didn't have breast cancer, and that she had a cyst or a "nasty boil", told her she didn't belong here, then made fun of her some more. How much do you think making fun of someone is going to change their mind about seeing a doctor?

My mother taught me to respect my elders.

MelissaDallas

"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."

"Medical". Key word.   I do not understand how this mission includes hosting "unicorn farts cure cancer" as a legitimate part of the community or as a helpful resource to women seeking a legitimate  and respected source of information. I could have used Facebook or any number of websites if that was what I allied with and sought.

I too am worn out with trying to provide a voice of reason and getting shouted down, or worse, chastised, for trying to provide sensible and medically sound answers, sometimes to members who the mods KNOW are a problem and have tried to play down themselves.

Anonymous

voraciousreader, I'll have to go look & find your thread, your post here was SO fantastically accurate, and now, sadly, almost funny, given what's happened to Beesie's serious attempt to address issue on bco.  Thanks again for that post, going to google the books now. Love D. M. as a historian, didn't know about the viral speech, book.  Thanks again.

abigail48

the thread is called book lovers club

exbrnxgrl

All members who attempt self dx , including Abigail, have always been urged to seek professional medical guidance from the beginning.

lightandwind

But what happened when she disagreed with you though? You ganged up, you deamened her. You disrespected her. Over and over again. Did you spend the last two years trying to build some kind of respectful rapport with her? so that maybe she might possibly be willing to listen to something you had to say?

exbrnxgrl

uncle!

MelissaDallas

You can't have it both ways Light. You can't completely validate her experience and "build rapport" to encourage her to seek treatment both, and I have not seen that happening by her fellow alternative members. Either status quo is fine, which you repeatedly advocate, or it isn't...

leggo

This is so stupid and a complete waste of time. Abigail is not the first and certainly won't be the last person to be made fun of.  It happens all the time.  Having said that,  I have to add that MOST people who have an incessant need to look down on others would do it privately, amongst their buddies, not blatantly, on other threads. That's where there has been a shift,  not in bc.org's mission statement. It's disgustingly rude to make fun of someone in public. Seriously,  how were you raised that you think it's acceptable? Those who have been here many years will remember a very nice Stage IV lady from a county in a state whose educational system was very poor.  She had trouble writing, structuring a sentence. There was a group of four that relentlessly made fun of her. One of the usual suspects actually had the nerve to send me a pm asking if I'd like to join their little group in picking on her a week before she passed away. Though the circumstances of these two women may be different,  the harassment is the same. Some things will never change and posting this problem under the guise of "helping newbies,  a shift in bc.org," blah blah... is such bullshit. Really? You can't possibly think people are that dumb.  If you don't like someone,  leave them alone. If your personality is such that you have to make a statement that you don't like her,  do it privately. At least then you can maintain some dignity in front of other members.  Otherwise, you just come across as an immature bully, at least to me. I'm sure others feel differently, but let me tell you, if one of my kids dared do this to another human being (humiliating them in public), they wouldn't be opening their mouth for a while. Actually, let me re-phrase that. I know my kids wouldn't do it in front of me because they know what would happen if they did. I'm sure when they were, like 13, they had the urge, but did it amongst their buddies, not within earshot of their chosen victim (or their mothers). 

MelissaDallas

I also feel that the mods have, de facto, ceded control of certain threads to certain members and I do not understand that...Just because you yell the loudest does not mean you are correct.

lightandwind

Melissa, yes you can have it both ways. You can. The mods have demonstrated how, the other members on the thread have shown how. 

Also, You are incorrect. While you guys were busy making fun of abigal on the other thread in January, this is what I wrote to her: 

"I hope you don't find this intrusive or
offensive, but your posts about the lesion on your breast continuing to
grow is disturbing, and I just wanted to reach out because I know how
frightening this is, the redness, the inflammation, breaching the skin,
all very frightening.

I also wanted to say that I know you have
already said that your not going to choose any conventional means of
treating it but I wanted to share something with you about my experience
and also research. As you know I am very alternatively minded and I
don't like conventional ways of treating cancer either. But watching
that monster grow in my breast, I knew it had to go. From what I
understand, once a tumor has formed in the breast, it does not go away.
It is living life high on the hog and thriving in you warm breast, no
matter what you ingest to try to tame it, It is thriving because of the
fatty (adipose) tissue that surrounds it there, its' full of aromatase
which is one thing that drives the cancer. I do believe that things like
lugols (potassium iodine), Dim etc can help with prevention and
possibly help to slow down growth of a tumor in the breast but it will
not stop the mechanisms that power forth.

You know I respect your
choices no matter what they are, but I just wanted to make sure you
knew. There is a point of growth that is reached when surgeons will
refuse to perform a mastectomy. If you think you may decide that route,
at some point maybe better sooner than later.

If you are worried
about surgery inducing metastasis there are supplements you can take
before and after that supposedly help to inhibit metastasis. I did them
before my mx and so far so good. I had both breast removed because they
both give off aromatase from the adipose tissue, like two fatty globs on
the body feeding the disease. I know it seems barbaric. It did to me
to, but I had to make my decision because like yours, the tumor was
growing like wildfire. Here is an article about the supplements you can
take to prevent surgery induced metastasis. They are things like
modified citris pectin, AHCC from medicinal mushrooms, IP6,
Tagament(cimetedine), and a few others. Not sure if they do the trick
but they said it worked in the mice.

http://www.lef.org/magazine/mag2009/dec2009_Preven...

I
may not be telling you anything you don't already know, and if you made
your final decision about it then you can disregard all of this, but I
just wanted to share my thoughts, whatever it's worth. I care. I wish
you so much good no matter your choices

lightandwind"

Anonymous

HOW MANY TIMES DOES BESSIE, WHO STARTED THIS THREAD, HAVE TO SAY IT IS NOT ABOUT ANY INDIVIDUAL POSTER????

THIS THREAD HAS BEEN HIJACKED - sorry Beesie, many of the women posting tried.

nihahi

lightandwind, and others....what you CANNOT have both ways, is demanding respect....but not showing respect to others. 

This thread was not intended to be a continuation of the conflict circulating around one specific member, on the alternative forum threads. 

Please respect the OP here, by continuing your dialogue elsewhere, and allow this thread to be returned to it's original purpose.

Bren-2007

Bessie, et al.,

What an interesting thread.  Really enjoyed Voracious' post and the information from the books she's read.

I have read all the comments.  And I'm rather torn in my opinion.  I, too, have noticed a trend at BCO over the past few years of more and more focus being generated for the "undiagnosed" or "benign" breast conditions, as opposed to primarily support as a breast cancer site.  On the other hand, we have forums for everything under the sun on this site.  And I'm glad about that as I post on a thread with longtime friends that has nothing to do with breast cancer.

I do not post on the threads where the women continue to question whether or not they have cancer, even after getting benign results from the medical community.  It's hard to be supportive when you just want to scream "Go on ... live your life ... be happy!"  Yet, here again, there are some women with genuine concerns about a certain type of breast condition they have and nowhere else to turn for information and advice.

Leggo .. I've been reading your posts for years and like what you wrote about having some respect and dignity for each other.

I don't have any answers.  But for the posters such as Abigail who remain on this site, even though they have never been diagnosed, perhaps we can have some grace for each other.

Bren

Tomboy

i dont think anyone was "making fun of her", i think they were trying to get her to see a doctor. i dont see how that is disrespectful. and you guys do seem to be the ones putting us down for trying to get her to just go to a doctor. sounds like she had a bad surgery experience at 20. but who fixed it? A doctor.

lightandwind

Kathec-They were making fun.  It's been going on since last year. Many have witnessed it.

Bren- Admire your very diplomatic point of view. Thank you for addressing the "heart" of this matter.