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

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?

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

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. 

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.  

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.

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!

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?

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...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...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... 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.

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

Jackie

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