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

Although I am a fairly new member (less than 1 year), I tend to agree more with Ozzygirl.  I am sure there are some that will berate me or totally ignore the post because of it.

BC.org feels like a "safe" place to find information, share, help others, as compared to other sites on the web.  I trust information on these boards far more than I do elsewhere.  I recommend bc.org to all newly diagnosed women I encounter (which is quite a few).

My only complaint is the posters that berate others when their opinions don't match their own.  Or those that appear to have an agenda regarding treatment options.  I have seen newbies asking for help "shut down" by some of the seasoned veterans on this board because a question wasn't asked "correctly" or information provided was minimal.  To me, that is never acceptable, regardless of the reason.  At the forefront, this site is one of compassion and caring.  Why don't we keep that in mind instead of worrying about the legitimacy of the poster?  I am sure we have trolls and imposters on this site, but I think they are the exception and not the rule.

I manage development teams for software applications and our rule of thumb is don't waste time coding for the 5%, meaning don't spend 95% of the effort on a "problem" that happens less than 5% of the time.  I think we should apply the same principal here.  Why impose changes to the site on legitimate posters just to check for trolls or imposters that probably make up less than 5% of the population?  Instead, spend the time making changes or improvements that benefit 95% of the site population.

thanks again, Bessie

On the surface, that seems reasonable. This is a breast cancer site, so
let's add in all other breast issues. But here's the problem. It
doesn't take a lot of reading in the Not Diagnosed forums to realize
that the women most likely to stay here after getting a benign result
are the women who have the most anxiety about breast cancer, the ones
who don't trust their doctors, don't trust the test results, the women
who live in fear that they have breast cancer (or will develop breast
cancer soon) despite all evidence to the contrary. By encouraging these
women to stay, rather than gently suggesting that they leave (as used
to be done all the time but is no longer acceptable), we are fueling
those anxieties. How is that healthy for these women? But even worse,
by encouraging these women to stay, breastcancer.org is further drowning
out those few voices of experience who post in the Not Diagnosed
forums. So if I felt that my posts were getting lost before, it's now
become even more difficult to be heard.

I don't think there's much more anyone can do about this, kind of the same "advice" I gave to Caryn about just letting it go.  Don't think, as you know, those "voices of experience" are appreciated - why site has become more about camaraderie for those that stay on more than anything else.

WHOA - I can't let pass the statement that Bessie is "berating" this site.  If she didn't care ( which I can't figure out why she keeps at it when she's been blasted so much for speaking the truth from her valid experience) she wouldn't be putting this much energy in trying to improve things.

Example - yes, if ya wanna know something about DCIS, check with Bessie.

I managed to successfully complete 6 years on Arimidex, no easy task, and thank lowrider,( who sadly is now with Athena, RobinWendy, Apple and many others we used to learn from)for starting the thread now antiqued - but darn, it's just not worth it to fight this hard to be heard - which means more & more self described "newbies" are trying to reinvent the wheel, without the information we had.

Really am removing this from Favorites now - thanks again, Bessie, for pm.  Good luck with this.

the night before i started chemo, i sat at my computer, because i was really a wreck. i mean really just ready to jump out of my skin, or the window. and i typed:" i am terrified of chemo." and the first 3 results were bco. And i read and i read, and soon i saw many women had made it through this. i mean, i knew intellectually that women before me had done this, but seeing it here made it much more real, and not quite as scary, and soon i was much calmer. not purely calm, but better.

and two things happened. i found another frightened newbie, and we encouraged each other that we could do this. And a seasoned member praised me, because part of what i had said, was that soon WE would be the ones to help other women, new to this.

i can't remember either's name at this point, but i will never forget how they made me feel. they made me feel welcome, and not alone, and that i would be allright.

so bco worked for me, the way it was supposed to, and i stuck around and educated myself about bc in general.  all of those fundraisers everywhere, did nothing for my awareness. yeah, i was aware of breast cancer, but i had no idea there were so many kinds, and different treatments for different kinds. i thought there was just breast cancer.  i was not stupid, just busy,and not particularly worried about breast cancer, at all- not knowing at that point that having extremely dense breasts was in itself a concern for bc.

so thanks to all the women here, who have helped to educate me, and also the ones who nudged me gently, or not so gently, in the right directions. over and over again, when i wanted advice that i should properly ask my docs, the women would make it very clear: "this is a question for your doctor" "we cannot tell you what that is,  as we are not docs", "it is best to see yr doc about that one" etc, but always wishing me the best while they were at it. A couple times, being a somewhat overly sensitive person, i got a little miffed. but i didn't take it out on the woman. and believe me, i am far from perfect or a saint. some of those women i have come to admire and respect very very much, and am happy when i see they have posted in one of my favorite threads.

on memorial day weekend, i sat down at the computer with the intent to go specifically, to help any frightened newbie i might find. and i was sorely chastised for being on the not diagnosed but worried thread, or test results are in!,thread, or something like that, and was astounded at the exact scenario that Beesie has been trying to convey. that is why i am posting today, because it still baffles me, at those womens anger, and their intent to disuade me from posting on that thread. part of what i had said was why are you guys still here? and wanting to shut me out of a place i did belong, because i could answer those new women's questions. i think they were under the assumption that only undiagnosed women could help undiagnosed women.

this is getting long, so i will stop in a minute. i just am starting to feel sorry for the mods, cause they are only human, with real feelings too, and i think that if bco were to shut down, for any length of time to fix all these problems, i for one would miss the hell out of it. pax

Kathec -

I agree with you 100%.  I use this site to help where I can (but I never claim to know anything - just share my experience and sage advice about go with your gut), to get information, and to bond with ladies in my area. I have seen women newly diagnosed start a thread, get chastised because they didn't ask questions correctly, and never came back.  My heart breaks for them.

So what's the issue? 

 Allowing trolls and imposters?  Can't stop that without major pain to the legitimate members.

 Alarmists?  Last time I checked, I am not a psychiatrist or psychologist.  That's an issue for them.  All we can do is point out the facts (not me...I don't claim to know the facts, just what I went through).

 Incorrect information?  You can't fix stupid, but you can provide statistics, links to other threads or articles that point the poster to the correct information. 

Newbies helping newbies?  The only time I see this as a problem is when someone points out a treatment or test as the only way because that was their diagnosis and treatment.  But most posts I see from newer members make a point, as I do, to let everyone know that they are discussing their experience and their opinion.  Most encourage the original poster to talk to their medical teams.

So what's the real issue?

Please maintain a respectful tone in this discussion and agree to disagree. Constructive feedback only. Thank you. 

Beesie -

Thank you for the clarification.  Obviously, I was having a problem seeing that there is a problem.  I now understand your frustration and concern where I didn't before. 

I don't spend time in the "Not Diagnosed but Concerned" thread because I don't feel I have anything to offer, other than to advise "don't borrow trouble" or "don't get on the train before it gets to the station".  I will visit to get a better understanding.

Meanwhile......what is the solution?  Or is there a solution?  Maybe a disclaimer at the beginning of the forum that encourages original posters are  to seek medical advice? Add the fact that we have seasoned vets on these boards with lots of knowledge that will be along shortly to help (I post that sometimes - offer words of encouragement while waiting for those with more experience to chime in). 

Just throwing stuff out there that makes sense without visiting the forum.

Thanks again for clarifying.  It helps a great deal!

All -

First - the "Not Diagnosed" forum does have a disclaimer to seek medical help already.  Take that idea off the table.

Second, I read the first three recent posts in Not Diagnosed and I really do understand the concern and frustration.  All three young women have convinced themselves that they have IBC.  One has even been to several doctors and had a biopsy but still remains concerned.  Another has received several responses with great insights and words of encouragement, yet she remains convinced that she has IBC.  Shaking my head in amazement.

I get it....I really get it.  But I have no idea what can be done, if anything.

internet forums everywhere are a test of patience.  We are coming across personalities we might never encounter in real life.  We are used to being around types similar to usI think.

I can handle the types who are medical drama types because i know a few IRL. They can be ignored. 

The confusing (and frustrating) thing for me here is the way BCO encourages things that probably shouldn't be encouraged.

Food for thought....I didn't join bc.org until I had mets so I have to point that out. Having said that if I had known about such a place in 1996 when I was initially diagnosed, based on what I'm reading here, I would have been one of the women who made you nuts. Cancer was my biggest fear. I was sure I had it, too scared to go to the doctor to get it confirmed/dismissed and there was nothing anyone could have said to convince me otherwise. As far as I know, I'm not crazy, have no mental illness, reasonably educated and emotionally stable. All this to say when cancer is your biggest fear, you need to be talked down gently and even then, I doubt I would have listened to anyone any way. I had already convinced myself. I'd have pissed you all off big time and that gave me a good chuckle today.

Again, what I perceive the issue to be is understanding the tiny difference, which is a HUGE difference, between being "supportive" and being "encouraging." I don't see this being an issue of "tolerant" or "intolerant.". I think what Beesie is describing is the issue of " enabling." Wouldn't we all agree that it's a bad idea to "encourage " enabling?  Wouldn't it be better to be "supportive" of the posters by identifying ways for them to go about obtaining info that will help them on their journey.....without being "enabling"?  Does anyone here catch my drift?  Because I think this is the point that Beesie is trying to make.  

I don't have experience with posters who aren't diagnosed.  However last year, I had an experience which I think magnifies and should clarify the issue. Now, before I give the example, let's keep in mind that this discussion board is open to everyone to read.  So, my greatest concern, and I think what equally concerns Beesie, is that whenever a newbie poster writes something, even if their lack of knowledge or understanding is apparent, other newbies might come along, read what this newbie has said, and believe what they read is correct.  And I will say that THAT is what I see as dangerous and sadly, becoming more common here at bco. The moderators have allowed an environment to fester where " enabling" posters is allowed to reign, while "supportive" posters get shouted down.  Ultimately, the biggest loser is the original poster.  The next biggest loser are people like the rest of us who come here and like Beesie, who want to be supportive but come here less and less because our constructive time can be spent elsewhere.  I hear and feel EVERYTHING that Beesie is trying to convey.  So maybe my example will crystalize for everyone what I perceive the problem is.

Last year, a sister joined in with a most "favorable" (that is oncology lingo) invasive cancer.  Not unlike the woman described by Dr. Brawley in his book How We Do Harm, she was highly educated and had access to Sloan Kettering.  Now I know many of you would have LOVED to have had access to Sloan Kettering when you were diagnosed.  I know I would have drooled if I could have been referred there. Sadly, my insurance wasn't accepted there...and thankfully, I too, had a "favorable" diagnosis, so it wasn't that important that I go there.  I consider myself lucky that I made it into the hands of several well qualified physicians who were able to help me on my journey that ultimately led to a treatment plan that was right for me.  Now, getting back to this sister.  Not only was she able to go to Sloan Kettering, she was able to see not one, but THREE doctors there, all of whom told her that the risks of chemo outweighed the benefit.  Like Dr. Brawley's patient, she wanted chemo and was on a crusade to find a physician who would give it to her. Now I was not intolerant to her idea of getting the chemo.  If that was what she wanted, then so be it.  However, what I was intolerant of, was when she was saying her OncotypeDX score of  "11" was on the "high" side.  Now, while her PERCEPTION of her score was that it was "high," the truth is that that number is a "low" score.  My concern was anyone new,who might read what she was writing and, might become unnecessarily worried if they received a similar score. Also troublesome was the tone of her posts that questioned the quality of her physicians. She was steadfast in her belief that they were all missing "something" in her pathology report and therefore could not be convinced that they were giving her sound opinions.  Her posts escalated over a few weeks.  She was becoming more and more agitated.  And then, when I suggested she "consider" counseling, you would have thought I was Hitler!  Now, not only was she bashing me because I "didn't know her," other posters chimed in telling me, " How dare you?". And what happened next?  All of these posters "encouraged" her.  How did they "encourage" her? They continued to harass me and they would tell her to keep meeting with doctors until she found one that she liked AND by all means, they would tell her, "Ignore voraciousreader!". In my book, THAT was not being " supportive.". That was encouraging enabling!  And, it was dangerous to not only her,but to her doctors who were taking time away from devoting themselves with other patients, it was also dangerous to her loved ones, especially to her children.  I know if I saw my mother questioning so many doctors,  as her child, would begin to wonder how much trust I would place in doctors going forward in my life.

So you see, what Beesie is frustrated about?  I am too!  It comes back to what I said yesterday.  We have done such a great job in our society of improving every one's self esteem, that no one wishes to pause and ask, "What have we done by empowering everyone and fawning so much respect over ourselves?". Doesn't anyone see the downside of all of this?  

I remember when I was first diagnosed, I knew NOTHING about breast cancer. NOTHING. And the second thing I learned after knowing NOTHING, was I had to accept that as much as I was capable of learning about breast cancer, there would be others that would ALWAYS know more than me.  Once I faced that fact, the rest of the journey was easier. I just had to find that one person who was more knowledgeable than I was and let them enlighten me so the journey was easier to see!  

If only most people here could understand what I'm saying, it would make the journey a lot easier for patients, families, doctors and everyone here who tries to be supportive!

"MEDICAL choices that offend us?" No. We are not concerned about those...some people who have dealt with the issue before may just like to point out the fact that there are other options. It's when someone believes they are going to be cured with a coffee enema that scares us. Of course chemo kills!!! So does breast cancer for heavens sake. Not doing anything kills as well. But proven procedures are all we have to trust. Would you have your daughter doing coffee enemas instead of seeking real medical help? I dare you. Treatments have changed in the past 50 years and there is a test to take to even know if chemo will help you - Oncotype, so not all women are automatically given chemo. I wasn't.

My step-mother got on a band wagon about chelation treatments years ago. Apparently it's supposed to cleanse the blood so she had my Dad get them - she didn't. Turns out he got lung cancer years later. Did she turn back to chelation? Did he? Not on your life! He fought with everything he had and it was at the world renowned cancer centre at Princess Margaret Hospital that I saw all the posters begging patients to not take "supplements" or other "natural" elements as they could and did affect the chemo drugs! Why take a supplement that fights what the chemo is doing and then have to take a stronger chemo, all the while you were thinking you were doing your body a favour? 

People need to LISTEN to the voices of experience. Especially as they are NOT experienced and admit it! Why else are they posting here? Do they just like the sound of their own "voice"? Do they need validation or a gentle push in the other direction (or a harder push if they stay blind to logic). We were ALL afraid and scared when we were diagnosed! We were all terrified of the treatment, but we listened and learned and didn't blindly crash our way through the vitamin department of Walmart because someone said that tumeric would cure us! Wait! That's in the spice department! And I'll grab a can of coffee while I'm at it.....

light....Please reread what I wrote.  Never did I say I disrespected the choice of the sister.  Nor did I say anyone should be banned or censored!  On a side bar, speaking of censorship if you read the book lovers club thread, you will note that I met John Waters last week!  I admire him and think he is a profile in courage.