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

luv_gardening

I'm sure all will agree that doctors can be wrong. In my case, despite having stage 3, a doctor sat opposite me after an examination and said firmly, slowly and deliberately, YOU .. DO .. NOT .. HAVE .. CANCER. He sent me for a Mx and US and booked me in with a breast surgeon to find out what was really going on. The radiographer came out to tell me the mammogram was negative and double check the US. He proclaimed nothing could be seen. The breast surgeon looked at the tissue samples from the biopsy, smiled and declared it looked like normal tissue. The results only showed a microscopic sample of cancer and I wonder if he had missed that spot and I was declared cancer free, what I would have been told on BCO if I had expressed my fears that they had all given the wrong diagnosis.  I would have been considered an attention seeker. Why are we willing to judge women who disagree with their diagnosis and deny them support?  Or tell a woman who has clear signs of undiagnosed cancer that she is healthy and probably just has a boil?  How is that helping women with similar symptoms who might think they just have a boil?

nihahi

I deleted my post regarding how the Mods presentation of the "guidelines". When I said after reading the mods message, that it clarified many many things....I did not mean anything other than.....NOW I get it.....if you use enough words in the rules....anything is acceptable. I did NOT mean that I felt the "mission" of bco as a supportive breast cancer site to people with breast cancer was being followed. But, I accept that as my opinion, not the facts as bco sees them. It is and will be my own personal choice of how much time and effort I spend reading and messaging in the future.

voraciousreader

Dr. Linus Pauling who advocated the use of Vitamin C died from cancer.  

wrenn

i wonder if some people are taking the information on this site to be more reliable than dr. Google because of the stated mission? There are odd cure claims all over the internet but i wonder if this site "comes off" as more authentic than it should?

voraciousreader

I knew that Beesie's OP would at some point devolve into the debate of alternative vs. Conventional.  That said, Paul Offit, MD's book, Do You Believe in Magic is a great place to begin reading about the controversy.  Alternative believers are not going to enjoy the book.  However, I must say, since the DH has a rare metabolic "orphan" illness, his "conventional" physicians are always seeking "alternative" treatments for him, since there are no "conventional" treatments for his illness. 

Bren-2007

Wrenn .. I think you have a very good point. 

Thenewme ... I am so happy to see you!  Just the other day I was wondering how you were doing.

Honestly, I don't know what more the mods can do to deal with the attention seekers and quacks. I would hate to see us "old timers" not respond to newcomers in need because we are afraid they may be unreliable in some way.  I discovered this site when I was diagnosed.  My surgeon recommended it to me.  What a lifesaver BCO has been. Even with all the ups and downs I do not hesitate to recommend BCO whenever I get the chance.  I had the pleasure of recommending this site to a nurse whose DIL was diagnosed with breast cancer at an early age.  She encouraged her daughter-in-law to check us out ... and the neatest thing happened ... she "met" another gal on-line that she clicked with and they soon became best friends in real life!

hugs,

Bren

voraciousreader

Mods...I must return now to Beesie's OP. What I see as the main issue is one of "respect" which is counter intuitive here.  It seems that over and over people, including you, the moderators are tripping over yourselves in trying to "respect" one another.  Recall the dust up a few weeks ago when a poster had a problem with the fundraiser for "boobs" that another thoughtful member was having.  Definitely gave you, the moderators and members a pause and time for reflection.

Similarly,  Beesie's issue also concerns the issue of respect.  Can an open discussion board thrive in an environment like this one?  Clearly, since this website was begun and now, time has changed and bco must change with the times.  Recently, I read about the difficulty that physicians face nowadays with patients as they try to navigate the shared decision making process with one another.  Not unlike the challenges that physicians face with patients concerning respect, the problem exists here as well.  Patients, like the one I described and Dr. Brawley describes in his book, go on doctor shopping sprees. Why?  Because many patients become their own "advocates" and respect their own knowledge (or shall I say "lack of knowledge") more than the doctors.  Further compounding the issue, is this discussion board!  Rather than hear from posters " common sense", you hear posters admonishing newbies to empower themselves, which IMHO shakes up the balance that patients and their medical teams have with one another. 

One might ask, "But how do we get there?" Dr. Brawley tells us with one word.  Education.  Unfortunately, the process of educating is being hijacked by those individuals who claim respecting the individual should usurp everything and everyone else.  If only it was that simple!  We wouldn't hear about how courts have needed to intervene, rightly or wrongly in matters of individuals' health if it was that easy!

So, as moderators, your job isn't easy, as you state.  You are victims of your own success.  Looking over 1200 posts a day certainly is a huge and complex task.  However, that doesn't mean that it is impossible.  Just as you crossed out many of thenewme's euphemisms, why haven't you "moderated" similar posts?  Just because the job of moderating is huge, doesn't mean you can ignore the complexities of what is being posted.  It most certainly contradicts your mission.

Would I like to see a censor police state?  Absolutely not!  Having recently visited The Degenerate Art exhibit at NY Neuie Galerie and having also met, last week,John Waters, I can appreciate that censorship is cruel and unnecessary in a democracy.  But I do not agree that one person's right for information should devolve into an issue of respecting one person's opinion, good or bad, over respecting the opinions of others, including that of the opinions of numerous physicians.  

Mardibra

"Or tell a woman who has clear signs of undiagnosed cancer that she is healthy and probably just has a boil?  How is that helping women with similar symptoms who might think they just have a boil? "

Clear signs of something....none of us know what it is.  Could be BC or could be a boil...you dont know because she refuses to see a doctor.  So, in your opinion we should just blindly lend support because it might be true.  What kind of support is that?  Is that what this site is intended for?  I didnt think so.

Tomboy

i too am gobsmacked that that post was struck out. so we like the moderators must have a responsibility to report posts exactly like them, and if they pm us, to give the time and date and thread to show them why we did so.

wintersocks

Joy,

I have tried to stay away from this discussion, because quite frankly I am a little shocked at some of the ideas put forward by some. Your post Joy, is to be upheld as commonsense, fair, and above all empathetic and compassionate to those who are vulnerable. 

All of the posters on here need to remember that this board belongs to no-one and to us all.

It is never ok, to exclude anyone from posting here (unless the Mods decide so) and I trust them to do so where appropriate.

voraciousreader

Joy...I could write a whole chapter about how my mucinous breast cancer was missed.  So could my cousin who is now being treated for HER 2 + breast cancer.  Would you also like to hear about how the nuclear stress tests missed the DH's blockages and ulcerated vessel that was 1mm away from bursting?  And if that wasn't bad enough....one of the DH's bypasses closed up and he STILL got normal stress test results. Call me a fool, call me an idiot, but don't call me late for help from above. So, what did VR and the DH do next?  Fired our physicians, chose new teams of physicians and continued our praying!  After that, we continued educating ourselves and educating our new teams of doctors AND we continue learning from them as well!   Amen.

Joy, I sincerely hope you continue to do well!

dlb823

The most recent comments about missed dx'd made me think of a recent study, reported here:  http://jonbarron.org/doctors-and-drugs/study-finds-diagnostic-errors-are-common#.U6B7CJRdUmU

While I am not for fueling anyone's unreasonable fears, depending on the situation, I often advise second and third opinions based on my own experience.  Not only was my bc missed for two years in spite of the fact that I had a palpable lump, but my recurrence was also totally missed by two docs. 

There are too many sad stories throughout these pages of women -- especially younger women -- whose concerns weren't taken seriously by their docs until their situations became way more serious than they ever had to be.        Deanna 

DiveCat

I don't think there is anything wrong with recommending a second or third opinion. I get it. I too know of cases where something was missed..in loved ones as well and that includes primaries and recurrences of cancer, as well as other conditions. I would never fault someone for getting a second or even a third opinion. Even if they were told the first time it was something benign. That is what second opinions are for. 

What I do think is a problem is advising someone who has seen 2-3 breast
specialists, had diagnostic screenings reviewed by 2-3 specialists, and
even biopsies - and been given benign results for all of them along with
a very reasonable explanation for what she is experiencing - to keep
pushing until she is "sure". Sure of what? Sure she will never trust her
results? Sure she does have cancer no matter what they say? Shall she
keep pushing for 20-30 years for more and more scans, and more and more
biopsies, increasing the radiation exposure, scar tissue, and anxiety
each time?

At what point is recommending further opinions just fueling unecessary anxiety, rather than recommending something in that person's best interest? How else is their life being negatively affected by that? Are other health concerns being missed as their scope gets so narrowed to one issue that really is a benign issue?

leggo

Even sadder, I think, when it happens on the Stage IV forum (and it happens ALOT). When they've been told there's nothing left to offer by their onc, yet they're encouraged to try more chemo, more doctors, travel here and there. Not how I want to spend my final days. 

Edited to add: That's where alternatives come in, so you can see why some of us are very protective of that forum.

wintersocks

Deanna

My breast cancer was also missed, despite ultrasounds, Mammos and biopsies. By the time I got my dx I was probably 3/4 years in with this thing.

I know of 2 younger women here in Britain whose breast cancer was missed. Both had 'thorough' examinations by qualified docs . 

Similarly, 10 years and 30 doctors failing to diagnose me  (and very sick, with a newborn ) I  diagnosed with myself as a  Coeliac. I was right.

We are often are own best guides, to know when something is wrong. Sometimes we get that wrong, but often we get it right.  

I would never tell any poster she has/has not got breast cancer no matter how many doctors she saw, or how many symptoms she has or has not. It is arrogant to assume that any of us here  know  for sure what a poster has or hasn't got.          

leggo

"We are often are own best guides, to know when something is wrong. Sometimes we get that wrong, but often we get it right."

Wintersocks, that may be the best thing I've ever read on here.

voraciousreader

Leggo...but herein is the quandary.  The patient doesn't often know when their gut is right from wrong. A good shared decision making example is when both doctor and patient agree.  I'm not saying agree just about treatment or lack of treatment.  I'm referring to agreeing about follow up appointments, tests, screening and of course treatment or lack of treatment.  Furthermore, the medical field has worked very hard in coming up with standards of care and informed decision making.  Is it perfect?  Absolutely not!  The idea of "watchful waiting" sends shivers up many people's spines.

I think what makes this discussion board so frustrating is, as Dr. Brawley's claims in his book, there is a need for "rational" healthcare.  Not "rationing", but rational!  Here at bco, there is barely a murmur of " rational" healthcare.  So, as long as sisters jump up and down and INSIST they are their own best advocates, and sisters here FUEL their egos, without tempering bco's discussion board creates an imbalance in fostering a healthy relationship between patients and their medical teams.

Deanna...Physicians are humans and know every single day that they have the potential to make errors.  That's why I chuckle  and say, "They practice medicine with emphasis on the word 'practice'.". Likewise, patients make their own mistakes ranging from benign neglect of their health to being on a spree of healthcare services.  Neither extreme serves the patient well...nor the doctor.

But I come back to what Beesie describes.  Can this discussion board be a safe haven for people to understand the complexity of breast issues when the din of a few subjugates the mission of bco?  Sadly no!

leggo

Then, perhaps we need to clearly define who's causing the "din" that subjugate the mission. I don't think that's been clearly defined by anyone. If it has, I apologize....don't see it. Once defined though, I'm pretty sure yours and mine would be different.

voraciousreader

leggo...you may be correct.  But that is where the folks who are Breastcancer.org need to figure out, regardless of both of us.  They can't be all things to all people.  

leggo

No they sure can't. I give them kudos for trying, though. The squeaky wheel gets the grease, right? 

voraciousreader

leggo... And from what they deleted from thenewme's post, it is apparent they have their work cut out for themselves.  So now it is up to bco to decide how to contain THEIR discussion board.

leggo

I don't want to see it "contained". That's just me, though.

leggo

To clarify, by that I mean, the headings for each forum are clearly spelled out. Whether or not members choose to follow those rules is the question. I personally don't like all the different categories.....that's what I mean by "contained".

Beesie

Mods: "Now for constructive solutions and suggestions..."   Okay, how about this?  

To wrenn's point, I think that the information on the discussion board is given more credibility than it deserves because it's part of a website called breastcancer.org.  breastcancer.org is a source of excellent information about breast cancer, with content that is written by and/or vetted by doctors.  breastcancer.org is one of the "reliable" websites that I often link to.  It's not surprising that the credibility of the breastcancer.org website transfers over to the discussion board. 

So how about if you transfer over the medical information too?  Mods, you have been doing an excellent job of popping into many of the threads, providing links to other breastcancer.org pages with medical information.  The problem is that more often than not, the women who use a discussion board come here looking for someone to answer their questions - if they were interested in reading through webpages, they would be doing that.  Yes, there are a few of us who enjoy clicking on the links and digging through the research and reading the articles, but we are not the majority.  Most of the women who ask a question here want the answer handed to them in the form of a response to their post.  I am known for including links in my posts, but I rarely include just the link; usually I include a brief (or not so brief) summary of the information, highlighting the key points that address the OP's question.  So I provide the information, and include the link to the source of the information.  

Why don't you do that?  I can appreciate that as Moderators, you don't want to be seen as dispensing medical information.  But I think that's easy to get around - just preface the information by
saying "This is what our doctors at breast.cancer.org have written about
this:"  Then include a cut and paste of the specific information that is provided on the breastcancer. org page.  Follow that with the link so that the OP or other readers can get more details if they wish. 

I
understand why a scared newbie might not listen to someone like me, who
is telling them that their doctor's advice appears to be sound and consistent with what one would expect in their situation. I appreciate why they might prefer the posts
that tell them that they are right and they should seek out 3rd and 4th and
5th opinions and insist on more tests or a biopsy (or whatever the issue might be).  But I think that a scared newbie might be more inclined to pay attention to sound
advice if the Moderators chime in with specific medically vetted information.  Additionally, once that information is posted in a thread, I think that those who currently are part of the fear-mongering feeding frenzy might be less
inclined to post contrary information.

Now if that makes any sense, the other thing that's necessary to do (and what probably should be done anyway, given that breastcancer.org seem determined to expand their mission to include all breast issues), is that the breastcancer.org webpages that discuss benign breast conditions need to be significantly improved.  Right now those pages provide the highest of high level information which for the most part doesn't address the questions and concerns that women come here with.  Perhaps there also should be a breastcancer.org medical page on Alternate therapies, that talks to what people should look for and consider when making the decision to go Alternate.  This information could then be cut and pasted into posts in the Alternative forum when the discussion seems to be getting heated or out of hand.

That's my suggestion.  

IllinoisLady

Beesie, I am very impressed with your post and the detail it contains. 

Jackie

Moderators

Beesie, these are very valuable and much appreciated suggestions. 

To the first point, The Mods have tried to provide "important links" in one thread that is a sticky at the top of each forum. However, we could definitely expand on these and refer back to this sticky thread, if not always back to specific content pages on the site. 

I think that this could also be done for Newbies in a more expanded fashion, and could be very helpful to them, and to us! 

Throughout the years the BCO team and board of directors have taken time to reexamine the mission statement. That said, we all agree that we should reexamine and perhaps provide better additional explanations about our mission as we continue to grow and change. 

We also agree that adding additional content re. benign breast conditions, and Alternative medicine is a very good suggestion. 

Thank you for bringing us some salient and constructive suggestions. 

Anonymous

Thenewme - thank you, once again, for posting.  STUNNED by the strikeouts in your post, when they are allowed in any Forum.  STUNNED.

Divecat- The more "coffee enemas" and the things that were "struck out" in thenewme's post, are RAMPANT in one Forum, and the controversy when people reply, and it's called bullying, generates more posts are all NUMBERS, HITS, to a website, generates more $$$ and tho not stated in the legalese of the "mission" of many organizations running Forums, ya gotta know it's WAY UP THERE on the list.

In my opinion, the good has been washed away by all the garbage.  Sad. 

Ozzygirl

On the Alternative Forum - One of the things I noticed is the disclaimer...not sure how many people read that or if they did do they remember it? . Maybe moving the content (or a subset thereof) to the top of the page under the description. 

Particularly this statement 

You
acknowledge and agree that these views, opinions and recommendations
are not a substitute for professional medical advice, diagnosis or
treatment. You should always seek the assistance of a medical or other
healthcare professional for medical and other health matters.

Based on what I have read recently as a result of this thread  - Maybe upon entering this area - each and every time, this is displayed before you can post or read.  Pain in the rear end but it would be a simple click through but it could be an "in your face notice" to all who participate - even in lurker mode. By forcing a click acknowledgement each time the member/lurker is given information that may prevent someone taking something out of context and potentially causing themselves harm.   That way they would understand that BC.org is not endorsing the views expressed therein and that it does not take the place of medical advice or a diagnosis (a sticking point from what I have seen)

Not trying to denigrate the alternative choices...practice some myself - but as noted some of the things posted may be dangerous if not properly monitored. 

If something like this is implemented then there can be NO excuse for anyone thinking it is endorsed by BCO and coming back later and saying well so and so said such and such on BCO and so it must be right. 

Will this help solve the concern about incorrect and potentially dangerous information from being propagated? 

 And yes mods I know it would require some programing but if the risk is great and there are some legitimate points made throughout this thread that seem to indicate that this is the case then it might be worth looking into

Moderators

Ozzygirl, also an interesting suggestion. We are not sure that we would limit to the Alternative section, but worthy of discussion. Thank you. 

Moderators

Hello Again, All, 

We feel that this thread has come full circle, filled with much emotion, devotion, brainstorming, working through of issues and concerns, and now concrete and workable suggestions. 

Breastcancer.org remains committed to delivering on our mission: to help women and their loved ones make sense of the complex medical and personal information about breast health and breast cancer, so they can make the best decisions for their lives. As an important component of our mission, we offer site visitors access to an online community to provide peer-to-peer support about the important issues related to breast health and breast cancer.  (YES, we changed it! )

Breastcancer.org has a social sharing forum because we want to broaden the conversations about breast health and breast cancer issues. The authenticity, value, and power of social communities rest in the inclusive and diverse nature of the contributions made. However, maintaining this balance in our community also requires careful, considerate, and thoughtful moderation.

We look forward to continuing to serve your needs and the future needs of the millions of people we serve around the world who have come to rely on Breastcancer.org for information and support.

With this, we are going to lock this topic, and appreciate your understanding. 

The Mods