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

"... If someone refuses to see a doctor or have tests done, but needs a doctor's diagnosis in order to know how to treat a medical problem, it is okay to support their refusal to see the doctor and have the tests?

If someone needs surgery and/or other treatments to have a chance of survival but is afraid of the surgery/treatment, is it okay to encourage and reinforce that fear?

If someone is perfectly healthy but has breast cancer anxieties, is it okay to urge them on in their desire to have more and more tests and medical procedures and even surgeries?..."

Thank you, Beesie.  As always, you've nailed it. 

I agree the tone of the board has shifted and not for the better.  It's not about good information, support and resources anymore, it's about a small group who persistently attacks, bullies, ridicules, and cries foul when opinions- and concerns do not mesh with theirs and who perceives prejudice- and persecution when nothing of the sort is going on.  To question is not to attack nor is it inherently disrespectful.  To plead with someone to please see a doctor when they persist in posting how awful their situation is (whether or not that situation is all in their head or not) is not disrespectful and unreasonable, nor is it "bullying". 

Being supportive is not just about reinforcing- and enabling decisions- or behaviour.  It is, also, about providing additional help, information, and assistance when someone is, obviously, floundering.

bessie - controversy on a website, in this media environment, often generates more "hits" which is good news for getting advertisers.  The internet version of the old print media "If it bleeds, it leads."  Trying to keep the "pablum" acceptable, the answer to your OP question:

In an effort to be everything to everyone, and to not offend anyone, has breastcancer.org lost sight of it's mission?  YES

 Truth - this is a place for "discussion" -"camaraderie," and women trying to help women, not the best source for info re:bc. Pablum, as you said.

In an effort to be everything to everyone, and to not offend anyone, has breastcancer.org lost sight of it's mission?

This org pays HUGE salaries to part time people, and that has to be funded.  Remember when the salaries at bco.org were published a few years ago, they certainly haven't gone down.

Could someone help me and define "patient."  If I self diagnose and decide I have a particular disease, does that mean I am a "patient."

I think blessings labeled this particular situation correctly.

But this doesn't address the valid question the OP asks.

As almost always Beesie, you took the thoughts right out of my brain and managed to put them into writing. Very, very well stated.

Joy, this is not about denying someone the right to refuse treatment for themselves. There are many members here who make choices about their treatments everyday, some choose to decline chemo or radiation for example. But, these are informed choices, based on a diagnosis, and based on information about recurrence risks, and so on.

This is about the issue of encouraging turning a blind eye to someone's self-diagnosis. How often on here do members and even mods discourage people who are waiting from test results or pathologies from turning to Dr. Google, but then in another thread where a member has not even bothered to see a doctor and is self-diagnosing,  or has been told by doctors they only have benign conditions yet still is trying to "self-diagnose" or pursue more testing, members are attacked for discouraging self-diagnosis by Dr. Google?

Yes, someone can refuse medical care. That is their right, but if they refuse medical care, it is misleading for them to purport to have a "diagnosis" and a "treatment" for that diagnosis. It can also be dangerous to themselves.

aunt-paula, as for why someone might keep commenting...because those words remain in that thread forever, well, as long as the internet does. Because new, vulnerable, and scared women and family members coming onto these forums might not know the backstory, might not know that the poster is NOT diagnosed. Similarly I see it happen in the high risk threads at times someone say "I am high risk as my great-aunt had cancer". Well, having one relative have cancer, and nothing more, does not make someone high risk, and I can't let that pass by as not only do I worry about that posters own assessment of her risk, I worry about all those other people who might stumble across that thread and now think THEY are high risk as a relative had breast cancer. So yeah, I cannot just ignore that. I do the same thing where I see someone say they chose mastectomy because they worried about distant recurrence and thought that would prevent it, and so on. I am concerned that misinformation gets passed around, and others accept it as truth, because there is already enough misinformation accepted as truth out there as is!

Dear Members,

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. We believe that the mission has expanded in recent times to include those who are not diagnosed but worried, dealing with on going benign conditions, etc. We do not feel that we can exclude those who are dealing with some degree of concern. We appreciate those who reach out from prior experience to offer support and to calm associated anxiety but we offer caution to not become invested in the decisions that others make and how others choose to use the boards.

We believe that there is a way to disagree and offer experience without judging and with respect, for example, “I am concerned for you that you have not sought medical advice.  That is not what I have done. I don’t feel as though I can encourage you in that direction but I wish you the best and realize that it is your decision to make." In other words you can offer perspective from your own experience without getting tangled in a disagreement about what is the right decision.  We are not here to prescribe treatment whether it be medical treatment or emotional treatment. We can only do our best to offer our own experiences. Everyone is free to make one’s own decision.

We continue to suggest that if you are having increased stress, anxiety, confusion or some level of emotional discomfort as a result of your experience with the community then it is your responsibility to either block individuals / topics that seem to influence such states. You are the best judge as to what is helpful and meaningful for you.

As always we appreciate your passionate interest in and care for this community.

The Mods

I guess my question is, then why engage at all? It's clearly not because there's an expectation that it will make a difference. So why continue to push it? There, for me, is where the line between offering information and giving someone a hard time for their choices just because one can (whether seen as legitimate or not) lies.

I'm going to be blunt and say that as long as there's a website, there will always be trolls and we can choose to feed the trolls or ignore them in hopes they move on.  I am dismayed that this site seems to be moving into "breast health and breast issues". In my opinion conforming and modifying is feeding the trolls.  This site is about breast cancer for heavens sake, look at the URL. 

Amy

some wonderful, thoughtful posts, but I think they are actually doing what aunt paula has so wisely expressed - it's a PRIVATE website, and "they're" gonna do whatever they want to do with it - remember, THINK GREEN ( money) and pink ( anyone is welcome to a Phuque Pink T shirt) so while I appreciate bessie's OP, it's really a waste of time.  Like trying to get someone who has "Munchausen's By Internet***" to listen to sound medical advice.

Just use what you need, and let the rest go, where ever it goes. I'm thinking along the same lines as wrenn

eta:**** blessings, you're so right!

....and i have felt attacked by some of those people, with benign breast conditions, where i went one fateful day, to the topic that used to be" waiting for test results" to offer support, and found women who had been around a long time, without breast cancer getting mad at me for showing up there, when i simply asked why so many of them where there for so long, looking for more tests-basically looking for non existant trouble. And they have been spotted by many members on many other threads up to and including stage 4 only threads, "encouraging' women there, with no info on there tag lines, to indicate what their own dx was. i call them cancer groupies, they called me a cancer snob. not at all, i told them i would switch places with them anytime, for the peace of mind of benign. where i would go off happily until if and when i had a dx, whether or not i chose to be treated.

when a biopsy showed a suspicious nodule and I was scheduled for a hemi thyroidectomy last year I went to a thyroid cancer site to compare notes on Bx. After surgery pathology showed the tumour to be benign i wished the women well and left (because I didn't have cancer).

I don't attend 12 step meetings either. 

imaginarybreaststuff.org  that's funny!!! Thanks Caryn for offering some humor.

oh god. i just got the best laugh ever, thanx bronx, i reeaaallly need that! cracked me up seriously!  ...imaginarybreaststuff.org... then ... hahahahaah, im still laughing

maybe we should just go and start our own diagnosed members only website, where you DO have to show your path report, or a note from your doctor. then we could have a test only section. REALBREASTCANCER.whatever.

wrenn, that was exactly the point i had used with one of "those" ladies, that i do have a nodule in my lung. i aint on lung cancer sites, bugging them for answers, or supporting them either, or even educating myself about lung ca, just incase, someday, ya never know. if the docs ain't worried, then neither am i.

There is scary content on this site. Why would someone without cancer issues want to read it or even spend the time?

People who have not had cancer cannot possibly understand what it is like to have or have had it.

Bravo Beesie!