Does this post make my troll look big?

I would think that if you are still here with posting priveleges after 600+ posts then you aren't breaking any rules as the moderator would have done something by now.  And you are certainly in the appropriate forum to discuss alternative approaches.  As with any issue in life, there will be some who agree, some who are unsure but interested, some who will disagree, and some who will vehemently disagree.  As long as you are within the rules of conduct, I think you are free to post your research and what is on your mind. 

"Misinformation, false hope, and fearmongering are my personal bugaboos."   

I share those.  And the one that I'll add is the inability to distinguish between research-based information and opinion. That's a huge issue, not just in this forum but everywhere on the board.  Whether in this forum or others, someone will post asking for information about a treatment or a diagnosis and three-quarters of what they'll get in response are individual opinions or personal experiences. These opinions and personal anecdotes are given equal weight to any real data. The few people who do try to present factual data (or I should say, research-based data because the facts change regularly in the world of cancer) are often either shouted down or ignored or told that the research doesn't matter ("I don't care what the studies say; I know what happened to me" or "I don't want to know what the data shows; I choose to believe XYZ" or "All research is fixed").  

Talking about our personal experiences can be helpful to others going through something similar.  Sharing our opinions is interesting and can be enlightening. Choosing to ignore a particular piece of information and instead believing something else can be the right thing to do to live life or get through a particular treatment. But all of this is different than research-based data.  And every day on this board we confuse the two.  I've been berated for presenting research data because some people didn't like what the results were.

I used to visit this forum more often but I found that there were just too many "data vs. opinion" arguments.  My interest and expertise (drawing on my professional background) is in digging around and finding the research.  But if no one is interested, or if it's discounted because someone's opinion is different, then it's just not worth my time and effort.  So I don't come by here much anymore.  

I am a DCIS BC member, hoping to prevent any further recurrances of DCIS or invasive BC. I basically had the bejeesus scared out of me last year with my diagnosis, and as a life-long "health nut", am still astounded that I managed to land here. So, with all that baggage, I search for the alternate view. As a natural born researcher, I love to look at all types of information, whether validated, tested, or in theory status. Do I believe all of it? No. Even the "double blind, yes, we've proven this" data that I come across. I am also a natural born cynic, you see.

Sometimes I see a study that is so narrowly-focused that I think the "interpreters" go to macro, and apply it incorrectly. Or sometimes not. Some of it is valid, and has furthered the cause. Sometimes I wonder which pharma company is footing the bill of that study. Yes, I worked in that industry, and know how those things work. Call me jaded, if you will.

So, suffice to say, that I am here to learn, research (you wouldn't imagine how many of these ladies' posts have generated a frenzy of library trips, Google searches, and tangents for me. I've learned how estrogen is metabolized in the liver, how "good" estrogen differs from "bad" estrogen, what Vitamin D does for my health, what the heck CoQ10 is... all from reading this forum.

Perhaps the thing I like most is the support that a lot of the ladies (and gentlemen- Timothy-you ROCK to do this for your wife) give to other BC patients. I appreciate a good, positive, intellectual rapport that I so often find on this board.

 A little bit of kindness also goes a long way for me these days....not much room for snark or pedantics, as it detracts from my quest for balance and health!!!

I initially came here for information. Then support. Support goes both ways and I enjoy both receiving and giving support. One of my closest ties ended up with a woman in Australia. We hope some day we can meet but for now we have friended each other on facebook.

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I had the "natural nuts" attack me as well. Not that I'm saying all those who do natural stuff are nuts. It's the ones that say all conventional treatment is dated, barbaric, controlled by the drug companies. That surgeons are motivated to do procedures to increased profits and therefore should be avoided.

The sad thing is I am interested in alternative treatments but these gals seem to stalk me and my posts. I have now stayed away from the "Alternative, Complementary & Holistic Treatment" threads.

The last time I was subject to personal attacks. I received so many PM by women who were upset with the natural nuts and their attacks on me. One post was even removed by the community it was so bad… and for that to happen at least 5 people need to report it. I stopped following the thread and the Alternative posts after that. This one just caught my eye under active topics. We'll see if they start stalking me again.

do you all assume that everyone on the alternative and complimentary threads are "natural nuts"? I am on here and I don't consider myself a nut! Just here to get as much info as I can to make an informed decision, I have learned so much from the ladies on all of the threads not just this one, as I like to say "take the best and leave the rest", I try really hard not to feed into the negatives that can occur on these threads, I think people become so passionate about what they feel, that this is where they vent, I try not to take it personally when people PM me and tell me I am crazy to use bio-identicals hormones. I totally understand that bogus people come on here in the hopes of selling something, however I hope we are all smart enough to not buy into their scams, I think most of us are here for the right reasons, at least thats my hope.

I am five years out now, but didn't find online boards until just over a year ago.  Had I know about BCO when dx, the journey would have been better.

I particularly appreciate seeing the research explained in terms I can understand.  Thank you Beesie, you are one I have noticed as being very good at that.

I finished my 5 yrs of Arimidex, and would like to learn natural ways to keep my estrogen lowered, but don't really know where to start.

One of the things I most resented was when a woman who had bc, instructed me to stop my Arimidex and take a miracle cure that can't be sold in pharmacies because .......

Marketing posts tick me off.  They should pay BCO to advertise on our site, not disguise themselves as members.  To me, that is theft.  Why would I choose to buy from such a person.

(Dare I do this?  Yes, I think so...)

thenewme, I really appreciate the link you provided in the Fungal Theory thread.  I read almost the entire excerpt on that website, and I found myself shouting in agreement.  (Not really.  My dh would have come running to see what was wrong.)  Now I'm going to have to buy the whole book.

Among the fascinating arguments the writer offered was this, at the close of the section reprinted on that website:

+++++++++++quote begins+++++++++

Spinoza's Dictum
Skeptics have the very human tendency to relish debunking what we already believe to be nonsense. It is fun to recognize other people's fallacious reasoning, but that's not the whole point. As skeptics and critical thinkers, we must move beyond our emotional responses because by understanding how others have gone wrong and how science is subject to social control and cultural influences, we can improve our understanding of how the world works. It is for this reason that it is so important for us to understand the history of both science and pseudoscience. If we see the larger picture of how these movements evolve and figure out how their thinking went wrong, we won't make the same mistakes. The seventeenth-century Dutch philosopher Baruch Spinoza said it best: “I have made a ceaseless effort not to ridicule, not to bewail, not to scorn human actions, but to understand them.”

+++++++quote ends+++++++++++++

I might have to print out that statement and frame it, so I can refer to it as necessary.

otter

thenewme -- Thanks for starting this thread (your very catchy, clever title caught my eye)!  I agree, there is a plethora of valuable info in the Alt Forum, and I have benefitted from much of the info, and truly appreciate all the effort that those of you with far greater research abilities than I have contributed.

But I cringe when I see info that is nothing more than opinion presented as fact.  As well, having been around basic and clinical researchers for my entire working life, I go a little crazy when I see some posts that denigrate their efforts and accuse them of being controlled by "big pharma".   Something else that bothers me is a poster affirming that what she/he does is working, and therefore everyone should try it.  If we know anything to be true, it is that we may all be just a test or checkup away from having BC return, no matter how great we feel or how much we're doing to keep it away.  There is no certainty with BC.  (sorry to sound like Debbie Downer -- yes, my tests are next week and I'm a little on edge!)

Anyway, thank you again!    Linda

Yep, she just posted it!  But I'll take mine with blueberries!

I've known a number of people in the medical research field - wonderful people who are truly dedicated to finding cures or treatments to better people's lives.  Is everyone in that field wonderful? Of course not, but I too hate it when I read the negative comments about clinical researchers and the work they do or when I see comments that suggest that all research is worthless. 

What's really interesting to me as I read the responses is this thread is how many of us have professional backgrounds that in one way or another help us navigate our way through all the information that's out there about breast cancer. I know that there are others who also keep it to themselves.  Funny how if you read the board, all this great knowledge tends to be drowned out. And funny too how so many of us try to avoid references to our backgrounds. Around here you wouldn't want to say anything that might suggest that you just might have a slightly better understanding of what the data says or what it means than someone who doesn't understand what a percentage is... no, no, you'll be shot down for that!  Sad, isn't it? 

thenewme - I just came across this thread and read your first two posts. I love the no nonsense, anti passive-aggresive message in them, I agree wholeheartedly with your appraisal of salespeople not being as bad as the histrionics of some, and I am sorry that you have been subject to such vitriol. And your thread heading made me laugh! I would say, "hang tight" but I know you already do.

Reading while sipping my green tea. Mmmm..