Does this post make my troll look big?

MaryMeg

barry,I don't mean to imply that any decision-making process is wrong.  We need everyone, and everyone provides new ways to help us see things.

But for each of us there is a different balance of how much of our decision is intuitive, how much is stacking up a list of facts and numbers, how important it is that the decision feel right as well as look right, etc.  We do need to respect that and appreciate that without all types, we're toast.  I've been involved in too many decisions (my organisation works by consensus) where the data all lined up right and one person kept hedging, saying "That just doesn't feel right to me."  We'd grumble, and put off the decision and then all realize in the morning that she was right--and if we hadn't listened to her, we'd have made the wrong decision.

At the same time, if you prefer to go one way, it can be nice to hang out with like-minded people one in a while. :-) It can get tiring discussing things with people whose approach seems different or frustrating (even if we end up in a good place from it).  That's really what it is for me.  I love being in a group like this, and am grateful that we can occasionally split off and be more comfortable before rejoining the wider group.

Hindsfeet

MaryMeg...It would be pleasant if we could have threads of likeminded people. I would like that very much.

In reality, it isn't happening here on the alternative board. It seems that the "intelligent" want their own thread to talk about us behind our back. This is why I believe this thread to be wrong. At least this is my perception...venting against those who don't go all the way with conventional medicine, or talking about a product that iwe use (but don't sell it). Twisting information to make us look like quacks...my goodness, this makes us look bad, doesn't it? 

Yes, it would be nice if we could have threads, where like minded people could discuss a topic without being attacked. How pleasant to discuss the fungal theory without constant stones thrown at us. We are interrupted with put downs and needless drama.

  If people don't like the  fungal theory discussion, don't go there. If others with differing opinions wish to join the discussion in a respectful manner, please do. There is a lot of immature behavior going on amongst these threads, and this is why I have chosen to speak out. It has to stop.  

It is an insult to me, for someone to think that I base a serious decision, cancer  treatment, on a gut feeling. My decision has nothing to do with a gut feeling. I look at the whole picture, the risk factors, and lots of reading from alternative and conventional medicine. I line up the pro's and con's. I'm taking into considerations my autoimmune problems, RSD and much more! I researching everything! I want an informed well thought out decision. I read the threads on tamoxifen, chemo and other cancer treatments. I bring my findings to my breast cancer doctors. I talk to them. Afterwards, I put it all together, and decide what decision I can live with. That sounds pretty intelligent to me.

I may not be a numbers person, but that doesn't mean I can't see the forest for the trees. I am also a professional person. I am an author. I have never and will never advertise it here.  I'm about to publish another book. I am grateful for my editors...:) BTW ... my book has nothing to do with cancer   I am a public speaker, a director and a teacher. I work with professionals. I'm married to a left brain genius numbers person. So...I understand a lot more than you give me credit for.

And, if we knew more about the alternatives bc sisters, you might find that they too are professionals...and the others are just as smart.

I want to add here, I've stood up for my b.c. sisters of differing opinions, when I felt they were unfairly attacked. It can go both ways. I don't tolerate bullies. unfortunately comments are often said out of hurt, and defense. Remember, we're all bc women who needs to be treated with respect.

luv_gardening

Well said MaryMeg.  My intuition often pulls me towards something illogical but I've learned to follow it as I've paid the price when I ignored it.  I can't explain it scientifically.  Also I've come to learn that often following the wrong lead will take us to the answer in a round about way.  To my way of thinking, all research has some potential even when it seems wrong or crazy. 

I have clearly stated on the fungus thread that I don't agree with the premise but I appreciate all the hard work, dedication and enthusiasm going into it and hope it achieves something. To see someone studying a whole new technical subject, (using facts not intuition), is inspiring.

Beesie, I also hit a brick wall when I tried to inform people that stage III is a higher risk.  Several said it was just a different treatment, and that evened out the risk.  The statistics say I'm right but then when others stage III women said they preferred to think that the cancer was surgically removed and they were now stage 0, I realised that if women feel more comfortable with that, then there was no point pursuing it.  And that's the whole point of being here, to feel supported and safe.  So it's pointless getting upset if someone is not getting what we're saying.  Compassion and support must come first.  Also we need to trust that no-one is going to drink a bottle of bleach or anything crazy simply because close to 100% on BCO have followed conventional treatments and if they use alternatives it's to try and prevent progression or to try to minimise side effects from conventional treatments.

Compassion, Trust, Support and Friendship. That's the bottom line.

lago

barry I never said one group was less intelligent than the other. My issue (as well as many others that find comfort here) is when I do support conventional methods I am abused, ganged up on and personally insulted. That is no way to have a discussion.

My other issue is when research is presented. One really needs to understand research  methodology, results and possible flaws. There are a few women/men on this forum that actually have this expertise. Many times when a person questions the research presented that supports the natural or refutes the conventional they are ostracized rather than discussing the issues that might be problematic with the research.

So what it boils down to is respect. I'll use beesie as an example. I haven't always agreed with her (although most of the time we are on the same page) but I do respect her and appreciate what she brings to this forum. We have never insulted one another not do I ever see that happening. 

steps down from soap box 

iodine

Wow, the title of your thread was enticing, and the content absorbing.  Hurrah!  Too late I saw what board it was on. 

I left this one years ago, after a long battle with the coffee enema and "diet will cure you" folks took over.  Hmmm, I've always wondered how they were doing and hoped they were well.

I don't fall into the "intelligent" crowd, nor the research, nor the doctor's know nothing, crowds either.  I am a woman who, so far, made it.  I had my choices, and with reading here and Western medicine information sites (not that many blogs 8 years ago, thank God) seem to have made informed decisions.

I agree with you, thenewme, et al, it does seem that those who provide facts and back them with scientific research, get jumped on like flies to, well, I'm sure you know what.  And the holier than thou NON researchers,, well they just get more angry and to me, begin to sputter.

I take one point from Barry's well thought out and written (from her point of view) posts.  I see no reason that one must be gracious and timid when providing information to those who will not accept it anyway.  I must be gracious to my guests, and I don't have them on this board.  I am a "to the point" person and that's why I cannot bear to visit this board any more.  (I Know, what a loss!)  I  truly wanted information about complimentary treatment but was overcome by the "know it alls" of the alternative world,.

Kudos to you all, well Done!  Such cordial posts, making your points, I am very impressed.  As it should be, of course!

char123

Hi Motheroffoursons:  microbiologist by training..I am very glad to know that about you and I am also very glad to learn what many may have or have not trained in...It does weigh in when the posts are heated debates what all the backgrounds are.... was almost afraid to post once on another thread due to punctuation since my background is purely finance!!  lol..

Husband11

The problem I see with surrounding yourself entirely with like minded individuals is that you become vulnerable to groupthink.  Dissenting opinions need to be encouraged and heard, otherwise there is a false appearance of unanimity and a misplaced confidence that goes with it.

lago

Timothy you are correct but this is more of a hug thread IMO.

AnneW

Dotti, dearest, you are SO much more than you give yourself credit for. I'm one of your biggest fans!

impositive

Hi everyone, I will introduce myself. I'm the crazy woman (lol) who started the fungal thread for those who have not yet been there.  In an effort to find a link I had posted there some time earlier, I did a search and somehow happened upon this thread. Thenewme, your title is hilarious.  Had I found it any other way, the title alone would have made me click on it...brilliant.

I will have to admit when someone first warned me of trolls on these forums, I was confused, I had never heard this internet slang.  Trolls to me were the little cute, colorful, spiky haired little dolls my daughters used to play with (think Toy Story 3).  I soon learned what everyone was referring too though.  I understand that we all need a forum with like-minded women/people, after all, isn't that one of the reason we're all here?  I have to say though, that I have felt attacked by a couple of you here and the fact that I found my thread and my name mentioned here enforces this for me.  Some have said they will have to go over and take a look.  I think what you'll find there is a few of us discussing this theory, with some occasional interruptions of blatant spite and sarcasm.   I will say that I  am convinced, However, none of us are saying it's been proven, we're simply thoughtfully discussing the theory.  It somehow goes awry every now and again because of strong opinion one way or the other.  So just thought I would drop in and say hi to those of you whose paths have not cross mine here.  What comes next is only directed to thenewme and digger so please dont think I'm referring to anyone else here.   

Thenewme and digger,

I'm sure you are great people and just because our opinions differ on this one subject, I cant imagine that we wouldnt agree on others.  I wonder though, if you know why you are referred to as trolls.  When you come to the boards, the discussions seem to turn to you trying to humiliate and degrade, to sarcasm and personal attacks, rather that staying on the subject matter.  I will admit, I have reacted with the same sarcasm.  You ladies must realize the effect your posts have on others, yes?  I know  they bring out the worst in me.  The attacks have started to escalate recently and for whatever reason, that seems to be of great interest to others.  Kind of a form of entertainment I guess.   

I have to bring this up.  I dont remember which of you said it but as you knew barry was waiting for the results of her biopsy, you sarcastically posted that "her thinking was a convoluted stick-your-head-in-the-sand thinking and it was her choice on how she approaches a theory, no matter how out there it is but whatever."  Then you said, "Barry, I do hope your biopsy, the potentially third time you've dealt with cancer, is benign."  Now others reading this here, out of context, may think this was heartfelt, but you and I know it was meant to be a sarcastic, hurtful remark, especially pointing out that this was her third time dealing with this horrible beast.  I remember thinking that no matter what our differences, how could you say something like that to someone experiencing the excruciating wait for results we have all had to endure.  You claim to care for your bc sisters and that's why you post on the fungal thread.  I'm sorry...I dont see it that way and maybe you can see why barry see's this "troll thing" as something offensive. It seems it was started as a disguise where you can come here to dish about others you may not agree with. 

One or both of you have also spoken to another member over on the fungal thread. This poster has lemon sized lesions on the surface of her breasts that her doc has prescribed antibiotics for but has never tested the lesions to determine if it's something that antibiotics would help. She's also on metronomic chemo and a drug to stop her ovaries from producing estrogen but nothing seems to be helping.  To your horror, I suggested she talk to her doctor to test for fungus because her description of the lesions resembled some I had seen in a college text book I own called Clinical Mycology.  This was met by you with requests that she not endanger her health by listening to anonymous internet people (referring to barry and I) pretending to diagnose and prescribe meds.  She has changed from her prescribed antibiotic to an over the counter antifungal and has also been taking garlic, ACV, etc. orally, natural products that most all of us ingest without harmful side effects and her lesions are starting to recede.  Great news, right!  Now, who's to say if it's the antifungals or if maybe the chemo and non-estrogen drugs are finally kicking in but some success is definitely a step in the right direction.  

What we are doing over there is raising questions and having discussions about what we find.  If someone benefits from our discussion, it's a good thing.  I urge you all to come over and decide for yourselves if you think we're crazy by reading ALL the posts, not just the entertaining tit-for-tat and then decide for yourselves if trolls are actually cute little colorful characters as I imagined or internet slang describing someone who posts inflammatory and off-topic comments in an online community.  After careful thought, I'm not sure I'd like being referred to a troll under any circumstance.

impositive

Oh yeah, BTW, MariannaHB, thank you for the laugh.  That was hillarious.  Whew....good thing we can laugh at ourselves.

iodine

Awww, Anne, you know you hung the moon as far as I'm concerned!  Hugs to all, both thinking and feeling, and thinking/feeling.

Hindsfeet

You will probably disagree, but I am going to say it anyway. This thread was born out of the fires of the fungal theory thread.... when thenewme was called a troll. She was stepping on toes all over that thread. If you are going to give it, someone is going to give it back....so it goes.

So she needed a hug. This is your place for hugs?  I saw from the beginning that this thread is a place to vent! It's a place to justify your actions. It is a place to inform newbies to beware of us quacks, misinformation and are trying to sell you a product. Seems like the agenda is more than a hug?

 In the times I have visited the alternative threads, I have seen more people leave due to the "intelligent" harrashing any suggested alternative approach to cancer. Now you all are here to pat one another on the back. I'm glad you all have a support group. My goodness!

Using Beesie for example. Again, she is one whom I have respected and supported. I respect her because she has acted professionally. She defends herself when needs to. She isn't one to call names and etc. She is the only one on these threads, besides a few others who don't beat up people who differ, who actually sounds like she knows what she is talking about.Again, I can't respect people if they don't act professionally.

lago...you said

My other issue is when research is presented. One really needs to understand research  methodology, results and possible flaws. There are a few women/men on this forum that actually have this expertise. Many times when a person questions the research presented that supports the natural or refutes the conventional they are ostracized rather than discussing the issues that might be problematic with the research.

lago...could you tell me who has this expertise? Other than Beesie, I haven't seen anyone acting the part, or giving the kind of evidence as does Beesie. They hit and run. If we don't get their point they call us quacks. 

Also...if I need expertise help I will go to someone who I know for sure is an expert...someone who acts professional, and has the most recent information. Someone who went to school here 30 years ago may not be up to date with the information I need now...old school.

These threads are mostly for support, sharing, caring, and good healthy discussion. No one here is a cancer specialist, unless retired? I'm so glad we have our own doctors.

So (((hugs))) I hope you feel better.

lago

barry That was my point…there are a few, not a lot. Just because someone doesn't post research links etc. doesn't mean they don't have the skills to analyse them. Not everyone wants to share in the same way. Beesie is just one of a few with research skills.

Also my other point is not about presenting the material but truly understanding the research, who ever presents it. For example someone can post 6 different trials all with similar outcomes. The samples for these might be 50-100 women each. That's under 600 women. To me that isn't big enough of a sample to say it was true… doesn't mean it isn't true but until they study more women one can't assume the past science is untrue. That's what I mean about understanding research results. It's of course more complex than that and I'm not saying I'm one of those research experts.

I hope this thread doesn't turn into defending the fungal theory. I still have not visited the thread. Seems to me that the fungal theory already has it's own thread.

digger

I've given this thread and its many comments much thought and really beat myself up about it.  Did I say some things that were inappropriate?  Definitely.  Am I not as articulate as I could be?  Definitely. 

But, I'm keep being drawn into remarks that Beesie said earlier on this thread about research vs. opinion.  And I've been asking myself, why do I read Beesie's research-related posts and not have the same reaction?  I may not be happy with some of the actual results of the research data she has posted throughout many, many of the BCO forums, but from my point of view, the research that is presented is evidence-based, not fearmongering, anecdotal, etc.  I keep going back to what she said earlier on this "troll" thread:

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. 

And that's a real shame that she doesn't come here anymore, and I can't tell you how many personal messages I've received with the same comments of people who have been driven away. 

So, again, I do really apologize for my earlier personal comments, I think I just got so frustrated for talking to a wall and constantly being berated for "not thinking outside of the box."  But I really shouldn't have said what I did, it just fanned the flames. 

But what I can't wrap my arms around is how is someone able to disagree with what is presented on the alt/comp forum?  If you notice, peope who disagreed with, for example, the fungal=cancer theory (which, if one looked up threads in the past you could see that none of the theories presented are anything new, none of the "new" research hasn't been hashed through here before, so it's not this new brainstorm), those posts were very polite at first and really tried to present research-based, evidence-based results.  Because, again, it's not like this is a new theory that  has just suddenly seen the light of day.  But those were all batted away with even more lists and narratives of this trial, or that trial, or this anecdote or that anecdote.  Anyone who didn't agree with the fungal theory was then "attacking." and "bullying."   Then according to some people's logic, disagreement=trolll.  Why isn't it possible to disagree with a particular alt/comp theory? What makes that person a troll?

Barry, one more thing I'd like to present.  A couple posts ahead of this one, you said:  Other than Beesie, I haven't seen anyone acting the part, or giving the kind of evidence as does Beesie. They hit and run. If we don't get their point they call us quacks. 

And yet, do you see that even Beesie has been driven away?  So if Beesie posted research and evidence-based data and results refuting the fungal=cancer theory, would you take that in more readily?  I'm very curious about that.

Take care everyone, and I do sincerely hope I didn't insult anyone on this posting, because I really didn't mean to. 

 

Beesie

kira, Nancy and MaryMeg, thank you!  I'm glad that I've provided info that's been helpful to you. MaryMeg, I'm INTP - which explains a lot, doesn't it?

lago, thank you too!  I will however respectfully disagree with one thing you said. There are actually quite a few women on this board with backgrounds that help us understand and interpret data and research. The problem is, as was pointed out earlier, that many who have this background keep it to themselves because of the backlash that so often occurs when we try to explain a piece of research.

Sheila, the recent discussion in the Stage III forum is one example of what I was referring to but there have been many others. Specific to the Stage III discussion, I can appreciate that many women choose to deal with the future by telling themselves that once their treatment is done, they are no more at risk than someone with very early stage BC. For many of the Stage III women that's actually true and since nobody knows for whom it will be true and for whom it won't, why shouldn't everyone choose to believe this? If the question is about "how do you cope?" or "how do you view the future?", this is great input into that discussion. My concern is when this is brought up in response to questions about risk and prognosis. If someone asks for facts or data, saying that the facts don't matter isn't a valid response. Even worse is presenting this type of "preferred thinking" as fact. That's misleading. Since I'm early stage, I encounter this issue more often from an early stage perspective where there seems to be a desire on the part of many earlier stagers to reinforce that their experience with BC is the same or worse than anyone else's, even those who are later stage. In many areas - the diagnostic process, surgery, treatments - it's true that our experiences are alike, regardless of stage. In those areas, someone who is early stage might go through a rougher experience than someone who is later stage. But when it comes to long term risk and prognosis, it's simply not true. However many early stagers want to believe that even in this area their experience is as bad as anyone else's. Why else do some early stagers say that their long term risk is higher than someone with a more advanced cancer because they didn't get all the same treatments and aren't been watched as closely? Why else do women with DCIS write that they made the decision to have a BMX in order to "save my life"? Huh?  DCIS isn't life threatening. There are lots of reasons why someone with DCIS might choose to have a BMX but saving one's life shouldn't be one of them. The problem is that this type of thinking is reinforced around here. And the result is that more women make these same decisions for these same reasons. I find that to be so sad. That's why I try not to let early stagers (DCIS, early Stage I) get caught in the trap of believing that stage doesn't matter. It does. If you are early stage, you should know that your risk is lower and you should be thankful that your cancer was found early. (There's a thread right now in the DCIS forum that touches on this and I put my two cents in.)

(((otter))) and (((digger)))!

barry, thank you so much for all your kind words. First I'd like to say that I haven't read a single post in the Fungal Theory thread so I don't know about the issues that you refer to there.  My comments here and my support for the women here has nothing to do with whatever may have happened in that thread.  Second, as I said to lago, I'm not alone in having some skills that help me understand and interpret data.  Maybe after 5 years, I've gotten good at how I present my posts but honestly, considering the flack that I sometimes get, I wonder about that!  I'm glad that you've always found my posts to you to be respectful but the truth is that I've managed to tick off a lot of people around here.  So maybe for you, my writing style works but for someone else, it doesn't.  And maybe for you, the writing styles of some of the others posting here don't work but for someone else, they do. All I know is that some of the women posting here, and a few others who have not been participating here, are among those whose posts I seek out because I learn from them.

Lastly, to me this discussion has nothing to do with intelligence. I don't think anyone here is saying that the research geeks are more intelligent.  We simply have a particular skill set and an interest in data and facts.  I'm sure that there are women on this board who have no skills in this area who are nevertheless more intelligent that I am.  And I'm sure that there are women here who are skilled in other areas (emotional counselling, as one example) where I'm at a loss. The issue to me is simply that there are some women on this site who have a particular skill that really can be beneficial to the board and yet our contributions often are discounted and denigrated and we find ourselves arguing about "facts" with others here who don't seem to understand the distinction between fact and opinion.  

If a woman has a problem dealing with her diagnosis and a response is provided by someone who explains that she's a psychologist, the last thing I would do is post and say that she's wrong or even worse, say that all psychology is crap and here's what you should do instead.    

AnneW

Where's the LIKE button??

Member_of_the_Club

Beesie, you rock.

I haven't been following the fungal thread so I don't know what the controversy is all about, but I will say I've been on these boards since 2004 and the contentiousness used to be much worse.  There was, for example, a guy saying he could cure cancer through handwriting analysis and when I disagreed wrote that i was going to die.  There was a woman who bragged about her wonderful attitude and how it was going to save her and when a woman with mets raised the possibility that attitude wasn't going to cure her, woman #1 said yeah, her sucky attitude was going to kill her (and she did die a few months later from bc, a lovely woman who is still missed by many of us).  I think things have actually gotten much better around here. 

lago

Member_of_the_Club shouldn't you be posting all that in the The dumbest things people have said to you/about you thread?

MarieKelly

Good post, Bessie. I couldn't agree with you more.  I've been reading and occassional posting on this board for almost 7 years now, and I long ago came to the conclusion that treatment decisions to the extreme are sometimes being made out of fear and lack of or misunderstanding as to personal risk. What gets written on these various forums does indeed get incorporated into some peoples decisions - and that's why I think it's so very important for people to understand that all breast cancer is not equal in terms of risk. I find it especially disturbing when newbies first begin posting, many of whom don't even yet have any idea what kind of breast cancer theyr'e dealing with, and they get responses from posters encouraging such things as bilateral mastectomy and "hit it with everything".  I don't respond to very many posts anymore because I don't see it being all that productive .And yes, Stage DOES matter. As does grade, tumor size and numerous other prognostic factors. Not all breast cancer needs to be hit with a sledgehammer.  And no, it's definately not "all a crap shoot" as I've seen stated here many, many times over the years.

I always read your posts, Bessie. You do an excellent job trying to educate with factual information and I'm sure you've put an enormous amount of time and energy into it through the years. I'm shocked to hear you've actually gotten hate mail. People are strange, that's all I can say to that.

SoCalLisa

Beesie, I just have to say that I for one appreciate your skills in the research arena.

I am sadly lacking in those skills when I comes to medical reasearch so I have

to listen to alot I simply do not understand. I am thankful for your input...

Cowgirl13

Beesie, i really enjoy reading your posts--you explain everything so well--in words that anyone can understand.

iodine

Beesie, there you go again, making sense!  Well said, standing "O" for you and all the ladies here.

MOTC, you go girl.  MarieKelly, you, too.

Wish I had some sage advice or info to share, but you all have done it so well!  And covered all I would have and more.

Thanks, I do hope the newbies find this information.  It's priceless!

Hindsfeet

I don't think you understand quite where I am coming from, or what I had to say. It seems that there are those of you who feel that this was not the thread for me. I would disagree. It is healthy at times to put everything on the table. To talk. This thread hit a sore spot, and I'm glad to get it out of my system.

 Before I leave your troll thread. I do have a few last comments.

I read your thread because I could not imagine who in the world would respond to such a thread. I probably would not have posted if snide remarks weren't made in reference to myself and a few others, who post on the alternative threads. My perception was that this thread was a way to gather support and affirmation because of the trauma you've been afflicted by the "quacks" as you have called us. Anyway, this is how it reads.

There are times when misinformation, breaking policy or just weird things are posted. You would have more influence if you graciously corrected them rather than name-calling, and putdowns. For those of you who don't visit the alternative threads this happens a lot!  Throwing stones is not the way to win friends or influence people. People are more likely to listen to you if you are kind. You can graciously agree to disagree. I try to ignore rudeness. I brush it off as their immaturity and move on. Unfortunately at times, out of being defensive, my alternative friends have made their share of cutting remarks. Other alternative friends fought back or was tired of the hits we were getting...it was there way of showing support.  

I would hope that everyone would try to work at better communicating here at bco.

I do not know who said that later stage cancer is the same as early stage cancer. Whoever did of course was misinformed. I would hope that someone would graciously explain to her why later stage is always a more serious dx. I would not belittle her for misunderstanding or chat like this about her on the board...like gossip. When I first came on these boards, I'm sure, I made stupid remarks. Cancer was new to me. I was helped when someone gently explained to me the what, why's and so on. I cringe thinking what must have been said about me as a newbie or even now that I dealing with cancer again.  My gut says that talking about someone like this is wrong. This is making fun of people who do not hold your opinion or who is misinformed. Aren't, we here to hold one another up?

Another example,

I posted the Essiac Story on January 12^th. I wanted to know if anyone tried it.

Digger posted on my Esaic story thread...

I really wish you'd head over to the fungal theory thread going on now.  It just gets more and more "out there," if you know what I mean,  and it's basically just a conversation now between two women who are bound and determined to prove everyone wrong.  I guess people want to believe what they want to believe, but if there were a miracle cure, I think we'd know about it.   

Again this was posted on the Essac Story thread...which had nothing to do with the fungal theory...yet digger changed the subject to the fungal theory thread. Besides, what she said was twisted and wrong. There are more than two ladies posting on that thread...lots of posters. No one on that thread said there is a miracle cure. No one was forcing anything on anyone. Plain and simple, she was making fun of us.  

I suppose what gets me is ... Know it Alls, Bullies, Gossip, and Pride.

So the end of fungal theory on this thread.

 To end this seemingly endless dialogue with this thread...I'll leave you alone to appreciate and console one another.

thenewme

Hi Barry, I'm glad you've posted here - as I've said all along, I really do value differing opinions.  However, I think your posts in this thread clearly illustrate your misunderstanding/misinterpretation of my (our?) posts.  I fully admit I don't have Beesie's finesse but I really do try to make my posts fair, clear, and sincere.  Apparently I need to work on that.

For the record, and I speak for myself:

*I'm not necessarily more intelligent than anyone here.  As Beesie so eloquently said, each of us have strengths and weakness that come into play in discussions.

*I'm INTP too. (Myers-Briggs Personality Type Introverted, Intuitive, Thinking, and Perceptive).  In case you aren't familiar with the different types, it's fascinating, and clearly emphasizes that no one type is "better" or "smarter" than another.  

*I started this thread to confront the elephant in the room (hence the thread title).  I've been called so many names and insulted so many  times that I started to wonder if I was the only one who felt like this.  I find it so ironic that the few I feel most "bullied" by are the ones most often calling me a bully.  And I notice most of them are silent the past few days. 

*This isn't meant to be a secret thread to talk behind anyones back.  It's a public forum and I wanted it to be very UNsecret.  It's an invitation to introduce yourself and let us know what you're really about.  

*Disagreement does NOT equal bullying or trolling.  Asking for facts and sources doesn't, either. 

*For me, the best discussions are the ones with give and take.  You (general you) present theory X, then I present counter-theory Y, and we discuss the merits and faults of each and come up with theory Z, which is much more robust and reasonable than either theory X or theory Y. 

*In my perception on these threads, the discussion often tends to go differently.   You present theory X, then I present counter-theory Y, and you call me a bully and a troll and a meanie and throw all sorts of unrelated stuff in, and I  throw up my hands and wonder why I bother.  And none of us have gained anything but frustration in the process.  

*Civil and reasoned debate/discussion is what I'm here for and, again, I sincerely appreciate everyone who has posted on this thread!

Beesie

barry, I too am glad that you've been posting here.  I never saw this to be a thread that was exclusively for one group of posters.  If you have concerns about what's being said, then there is nothing wrong with speaking out and saying so.  It's led me to try to explain why I feel the way I feel and frankly, I'm glad to have be prompted to do that. I agree with thenewme - the best discussions are those that involve a respectful give and take.  I can't speak for any other threads, but I think all the posts in this thread have been respectful. I am interested in how many people view this issue, not just the group of research geeks who are likely to agree. 

To clarify one point from my previous threads, I was not referring to any one individual with my comments about staging. So I wasn't talking behind the back of anyone and I didn't have any particular person in mind when I made those statements. I was thinking about lots of people and lots of posts! Over the past couple of years there have been quite a few threads that have discussed stage and whether stage matters. I have participated in some of those. From what's written in those threads, it appears that the majority of women on this board - just guessing here but probably about 70% - 80% - feel that "stage doesn't matter".  Some within that group no doubt recognize that there is a difference in prognosis between early stage and later stage but simply feel that it's not relevant (as in "anyone can develop mets" and "the fear is the same for all of us" and "we all experience the same things"). Others seem to truly believe (or at least publicly state) that staging is used only to determine treatment and is not relevant to prognosis; the belief seems to be that once treatment is done, everyone is in the same boat with regard to future risk (excluding Stage IV, of course). In threads where this is being discussed, it's not just a question of "graciously explain(ing) why later stage is always a more serious dx." Believe me, I've tried, as have some others (although I prefer to frame the discussion the other way, which is that early stagers face a lower risk). Let's just say that it doesn't go over well; those who choose to believe that "stage doesn't matter" do no want to hear that yes, it actually does. Personally I find these discussions to be very concerning because the implication to those who are early stage is that they should be just as concerned and fearful as those who have a more advanced diagnosis. As MarieKelly said, there are women who read this stuff and incorporate it into their treatment decisions. If there is one thing that I hate to see, it's when someone makes a treatment decision based on misinformation. Even worse is when they are fed this misinformation by others here. That's one of my personal bugaboos!  

Anonymous

To all - I did not read this thread as exclusionary, or calling out any specifics.  Like someone said earlier -there is a bit of a mean girl attitude from many of those that post most often on the alt. forum.  There are many of us that are very interested in conventional and alt. treatment.  I have learned a lot of things that I value, read things that I do  not believe in (vitamin C infusions instead of chemo) AND this is the only forum that i have personally been called names for questioning information. 

I appreciate this thread because it demonstrates that there are many of us that are interested in and read voraciously on the subject of breast cancer and what we can do ourselves to minimize our risk of recurrence.  

This is a forum open to all, and a thread open to all.  Honestly, this forum is the only place I have witnessed name calling, unbelieveable rudeness and moderators actually removing posts and entire threads.  One time Konakat was treated extremely rudely regarding her stage IV status. It was unbelieveable.  

As many of you have mentioned - I so appreciate the research and scientific approach that Beesie, Otter, Deanna from so. cal - cant think of your screen name), Pure and many others that I have witnessed posting great scientific information, and also disagreeing without name calling and personal insults.  Pure for example is huge proponent of an alkaline diet.  I find that very intriguing - I have the Anti-Cancer book, and am following many of the recommendations in it.

Like someone said earlier - when I see many of you post- my interest is piqued.  There are threads that I have questions about, but am reluctant to post in fear that I will be blasted, called names etc.  I think it does a disservice to all members to have a handlful of posters dominant any forum.  

To me, this post is not about calling out anyone, and I don't believe this is directed at any one woman - this is directed at an attitude and energy if you will that dominates this forum.  This thead supports those of us who straddle the line - conventional and alternative, and there are many of us.  

Barry - I think we all are glad you posted on here, and are on bc.org.  For what its worth - I have been taking juice plus for years - along with my kids.  Actually started before I was diagnosed.  I was very low in vitamin D - which I believe was a huge contributor in my diagnosis.  My onc. is totally on board with the vitamin D concerns and tests my vitamin D and estrogen levels quarterly.  Not all onclolgists are idiots.  I love mine.  I would not see her if I didn't.  Yes, I live in an area that has many oncology options, so I guess I'm lucky.  I also have been to Cancer Treatment and Wellness (part of Cancer Care America) and when I went there, they were fine with traditional A/I's but gave me great info on supplements and diet, and exercise.

Once again - thank you to all who post here and on all of BC.org.  This is how we learn.  WHERE IS THE LIKE BUTTON?!  If we had one, I could simply click like, would not have written a novel, and would be on time for work!!!!!!

Peace ladies!

luv_gardening

I spent ages looking through the fungus thread yesterday and noticed that although people are mostly keeping to facts, research, friendly chat and being very respectful, it was very frustrating for both parties when they were unable to accept each other's view. 

Unfortunately that frustration caused some to feel like they were being bullied and assumptions were made and some derogatory terms such as "snake oil" were applied to people trying to "peddle" the fungus theory which could imply people on the thread were in the same camp.  Negative assumptions were made about people's motives and then some new contributors came on just to make accusations or be sarcastic, and that was from both pro and anti-fungal viewpoints.

There's no point getting into details, let the past stay in the past, but I will say that if anyone uses unfair tactics in the future I might be respectfully pointing out their logical errors, assumptions, generalisations, insults and lack of respect, regardless of what "camp" they're in, so they can't claim to be innocent victims at a later date when people react.

Personally I love to have people come on threads with opposing views that are backed up by scientific arguments or valid studies and indeed, thenewme was invited and encouraged to join in the fungal thread and welcomed.

So ultimately, it seems we are all in agreement that civility is the best course and I'm  happy with that so please let's all move on now.

ps, thenewme, I'm also INTP, and probably borderline aspergers too.

luv_gardening

What I failed to say in the above post is that we all need to be wary of generalising.  For example, just because someone who contributes little to the thread uses the word troll, doesn't mean that anyone else thinks anyone in particular is a troll. So there's no need for anyone to think that they are being collectively thought of as a troll.  Likewise just because someone disagrees with our beliefs or conclusions doesn't mean they are bullying, being mean etc.  Nor does it mean they don't appreciate our contribution. 

Actually, taking offence is just as damaging to oneself and others as giving offence.  Please don't ask me to explain that, ask a psychologist or counsellor.  It's incredibly freeing when people realise the truth in that statement.  When we free ourselves of hurts, grudges and assumptions about other people's motives etc it's a huge weight off our shoulders and the world looks like a much better place.  But we can only get there when we're ready.

I find it sad that people are staying away from an entire section of this forum, or a particular thread when they can contribute so much.  I'm always hoping someone knowledgeable will correct the misinformation that is spread so often on these threads.  I have no formal credentials, I just read a lot and try to use critical thinking and compassion.

We're all doing our best in a bad situation.

Beesie

INTPs unite!  How interesting that there are at least 3 INTPs among this very small group writing in this thread, particularly since INTPs make up only about 4% of the population (and I believe INTPs are skewed to men more than women). 

For those interested, here is an explanation of each of the 16 Myers-Briggs personality types:

http://www.personalitypage.com/html/high-level.html

And here's the percent within the population of each of the personality types:

http://www.personalitypage.com/html/demographics.html

And specific to INTPs, here's some of what we are about.  This should really explain some of the posts in this thread, as well as most of our posts around the board!!

INTPs value knowledge above all else. Their minds are constantly working to generate new theories, or to prove or disprove existing theories. They approach problems and theories with enthusiasm and skepticism, ignoring existing rules and opinions and defining their own approach to the resolution. They seek patterns and logical explanations for anything that interests them....

The INTP has no understanding or value for decisions made on the basis of personal subjectivity or feelings. They strive constantly to achieve logical conclusions to problems, and don't understand the importance or relevance of applying subjective emotional considerations to decisions. For this reason, INTPs are usually not in-tune with how people are feeling, and are not naturally well-equiped to meet the emotional needs of others....

For the INTP, it is extremely important that ideas and facts are expressed correctly and succinctly. They are likely to express themselves in what they believe to be absolute truths. Sometimes, their well thought-out understanding of an idea is not easily understandable by others, but the INTP is not naturally likely to tailor the truth so as to explain it in an understandable way to others.... http://www.personalitypage.com/html/INTP.html