I say yes, you say no, OR People are Strange

Hi Mods,

Caerus-Sunflowers said, "I have given up attempting to "defend" chemotherapy and feel sorry for any "newbie" who is confronted by a thread like "Don't Do It" if ( when?) it appears again. And to allow a person to post a long article from some "Natural Publication" that compares chemotherapy to Nazi methods - really is more destructive than what ever Blue or anyone on this thread has ever posted.

If the Moderators are seriously interested in the well being of people new to the BC.org boards, then why is that kind of posting allowed? And why, when anyone takes issue with those words, are they the ones being reported???? "

I could have written those words myself.  I've been reported, stalked, and abused multiple times as well - always for my unpopular stance in the Alt/Comp forum. Some of the information posted in that forum is blatantly wrong and potentially dangerous.  Life-threatening, even, not to mention ill-informed and often vilely offensive.  Yet when some of us challenge, correct, or even question the information, somehow WE'RE reported and stalked. 

Dear mods, WHY do we need the report button?   There have been lots and lots of other spam solutions suggested in lieu of automatic deletions.  In any case, I personally would rather see spam than some of the antics I've seen here, especially lately.  PLEASE don't delete posts or threads unless for a very specific reason.  Posts should be allowed to stand as is, and the thread locked if necessary.  It's a real shame when information is lost, and an even greater shame when things get deleted by either the mods or by the community and we're left with nothing but blanks and conjecture.

Honestly, it turns this board into a game of whodunnit or who's-on-first that I personally don't have the time or inclination to play.  Please realize how badly BCO's mission of support is damaged by this and remove the "Report This" button.  PLEASE?

All of the above, Athena. And more.

I was stalked and harassed off these boards some time ago. On Friday, I received my second dx of breast cancer. I would like to feel I can come here and be safe and get support ... And the unsafe feeling does NOT come from the regular posters on this thread, but from those who come here to make trouble and disrupt this thread. It is crystal clear who they are if you read the thread ... It gets troubled only after they show up and make trouble. They have succeeded in getting previous threads like this deleted, and I do not want to see them succeed again. Please punish the instigators, not the regulars.

I have said and will say again and again - get rid of the "report" button - we can always PM the mods - they are working on weekends and nights now it appears so if things get really bad we have a place to go. 

Happy Libby please stay - this is where you should be.

Mods .. how would you enforce the 'no multiple names' rule?  How can you tell if someone has more than one identity .. is it by IP address?

I did like Athena's suggestion of raising the amount of 'reports' it takes to get banned.  Maybe raise it to ten instead of five, like she suggested.

The other suggestions you noted were good ones.

Thanks for all your hard work,

Bren

Mods, I agee with not "censoring" opinions - but when they are expressed in a frightening, threatening, YOU HAVE BEEN WARNED tone - well, I think that goes beyond just "opinion." I again cite a long post comparing chemotherapy to Nazi persecution, goes far beyond "opinion" and was a cause of much "retaliating reporting" when anyone tried to contradict the article posted.

I think we could leave the report button as a record keeping device to alert you, but we could strip it of the power to lead to deletions OR we could require a ten-report minimum rather than a five-report one. Otherwise, you will need a team of about twenty mods....your choice.

I think a final issue would be to address what has been happening lately and take a look at posters who may not technically violate rules with the content of their posts but who stir up trouble and abuse wherever they go. Those posters tend to leave a lot of deletions and reportings in their wake, as tempers flare. They may lie, manipulate, tease or otherwise cause even old strifes to resurface. We have seen this happen. Can the mods have a system to pinpoint troublemakers sooner? Can you feel freer to use your discretion and say "Hey, every time that person posts, all hell breaks loose, let's tell the person to shape up or leave."

You could send the person a warning, and ban them on the second or third warning, or something.

Would it help if people PMd you if they see such a troublemaker?

If we had a way to track posters who cause chaos, a lot of pain would be averted for everyone. I really mean pain because some people have been very hurt by these posters. Two threads have been shut down just in the suggestions forum. One other thread had to be shut down in the alt forum (although you folks recreated a pinned thread version). If there is a situation like that, can there be a written rule we could refer to that would allow you mods to shut that person down? I do believe we are each responsible for how we react. But I also think that in an illness forum like this, one cannot expect people to always feel serene. Sometimes a strategically placed warning or ban can help the whole board. It is also the case that some people are being persecuted and that needs to be pinpointed.

2 We take a closer look at the above-mentioned threads. For our purposes, we try not to censor opinions, as long as it is clear that it is just an "opinion" and not disrespecting other's choices.

I received this same response, to the very same issue, shortly after I joined the board more than 5 years ago.  The topic of discussion then, as it is now, was chemo.  The ruckus on the board was not all that different than the one going on now. The poster who started the controversy was the husband of a patient. Together they had decided that they would limit her conventional treatment to surgery, and they would go all alternative from there.  I remember the situation so well - the patient, who also posted here, was Stage II with about a 2cm tumor, 1 positive node (or was it 2?) and she was HER2+.  In those days there was no Alternate/Complementary/Holistic forum, so the posts by her husband and all the debate took place in the Chemo forum (or whatever that forum was called in those days).  The arguments made against chemo were the same as the ones being made today, with lots of talk about how harmful it was, how it didn't help anyone or save any lives, etc. etc.  Just like today, junk research was used to support the case. This individual may have come to this forum to talk about his wife's decisions and the reasons why they made these decisions but within a short time he was responding to questions about chemo and trying to persuade women who were newly diagnosed to follow his wife's path.  He presented misleading "data" and blatant lies.  I felt that he was dangerous because he was presenting as fact information that might lead a scared newbie to forgo a treatment that could save her life. To me, and to many others, he was doing much more than just offering an "opinion" - he was trying to influence treatment choices. 

At the time, I went to the Moderators to raise concerns about the blatant misinformation that was being presented by this individual.  Several other women here did the same thing.  The response back then was exactly the same as the response today. What he was saying was just "opinion" and all members had to be given the same opportunity to post their "opinions". I was shocked and disappointed. Today I am no longer shocked, but I remain disappointed.

The conclusion I've come to as I've spent more time on this board is that breastcancer.org seem to view the discussion boards as a place where patients and their supporters come to get information about how to deal emotionally with a BC diagnosis and how to manage through treatment.  It's a place where we bond and get support as we go through the BC journey. What the board isn't, however, is a place to come for treatment advice. Why would anyone come to a discussion board for treatment advice?  If someone comes to BC.org looking for medical/ treatment information, there is so much great information in other sections of the website, information that is written by and/or reviewed by doctors. The discussion board is just a bunch of BC patients supporting each other. Everyone should know that we are all laypersons and not experts. No one should come here looking for medical or treatment advice. No one should expect any medical or treatment advice that they read here to be accurate -it's all just "opinion".

But of course it's not, at least not in how it is presented.  The way that some of the advice is given and the way that information is presented, it often comes across as being much more than "opinion". There are some who go to extremes to try to influence the treatment choices that other women make. There are those who tell others what surgery they should have and/or what treatments they should take.  We see that here every day. And whether it's supposed to be this way or not, there are women who are newly diagnosed who come to this discussion board not just for support but for information about their treatment choices. They come here for help in making their decisions.  They ask what they should do.  These women are often scared and looking for answers. It can be easy to play into their fears. It can be easy to sway someone away from a treatment that already scares them - even if they may need that treatment to survive.

So, when is opinion more than opinion? I guess it's in the eye of the beholder.  I interpret the posts that I read on many of these contentious issues - the ones that turn into these nasty back and forth arguments - to be much more than just "opinion".  But I guess others see it differently.

I've always wondered what happened to the woman who 5 years ago decided to forgo chemo and Herceptin and go alternative instead.  I truly hope that she is thriving.  I worry that she's not.

Edited for typos only. 

It really, really upsets me to read a post stating chemo is the very thing that causes cancer. However since it has not broken any rules I cannot report it. So I just sit here and hope that a newbie doesn't come along and decide to forgo chemo because she read it here that it causes cancer.

Don't delete this thread, please. It truly is a friendship neighborhood, but with some bad neighbors popping in to deliberately stir things up. These neighbors would love nothing more than to see this thread vanish.

Deleting a popular thread like this is really just putting a bandaid on a severed artery. FIX the problem, darnit! I mean, please...

I'm going to disappear for a while.  I can't handle the stress of dealing with this recurring drama while trying to recover from multiple ailments.  My thanks to those who've offered support.  No comments to the others.

E

RiverRat yep. Page 2 on the 'Alternative/Holistic only' has a post that says 

"Treating cancer with chemotherapy is like treating alcoholism with vodka. It's like treating heart disease with cheese, or like treating diabetes with high-fructose corn syrup. Cancer cannot be cured by the very thing that causes it."

Having known two women in my life who took the alternative, no chemo, no rads or no surgery approach to their breast cancer, both of whom DIED, I feel very sad that newcomers dealing with the shock of their diagnois are smacked in the face with assertions like those re Chemo = cancer  on the Alternative/Holistic only thread.  I am far more worried about such incomplete information than squabbling on a friendship site.

I have to say, when I first came to these boards, I didn't bother with the threads that were clearly meant for friends or people already advanced in their treatment.  My focus was on my diagnois, what to do about Zaps, what to do if I needed a mastectomy, etc. It was only afterwards that I took a look around for women I could relate to who would also "get" the cancer thing.  I suspect I am not in the minority in my approach.

editted to add, it was not my wish to offend by capitalizing/bolding that these women died.  But those women are forever in my mind --bold and loud--when I consider my treatment options.  With three monsters, my goal whatever happened was to live.  And I knew the outcome of the alternative approach versus conventional.  At the same time I knew the women who died, I knew two other women with BC who took a more conventional approach and lived.  A part of me would LOVE to post some of the warnings by the FTC and the FDA about unconventional cancer treatment only I fear the firestorm that would follow both from the effort to share information and from the fact that I am one of those organic eatting, non-smoking, exercising, green tea drinking, minimal meat, no processed junk meditating people for over 20 years and yet, here I am on the breastcancer forum.

Letlet and Ann~

That is the thread that I find so offensive.

I completely agree with you...

Cheer up everyone. The day is almost over.

My day could have been a domestic nightmare and was not. I lost my cell phone at a metro station, of all places and, would you believe it, someone actually turned it in to lost and found. I think I have guardian angels. I have had some spectacular saves lately. About a month ago, I was walking on the street listening to music unaware of the rest of the world. My cell phone rang. It was a colleague informing me that he was at a park about ten minutes away from me and had seen my keys and club membership card on the grass. Incredible. I need to be less absentminded.

Dinner was....chicken, and I'm bloody sick of it. Going to my favorite Deli tomorrow.

Anyway, I wish I could post some nice recipe - Lindasa, Barbara, Otter..anyone ....what was dinner tonight?

River Rat - nice to see you back.