How can we make this truly safe, supportive, judgement-free?
Comments
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Joy,
Go to bed and have a good rest! -
No matter who you are, if you want to do anything or nothing, I would support you.
I don't feel I'm morally obligated to enforce the status quo treatments on you or anybody else.
We have a number of enforcers who come over here who feel insulted that we're not doing what they're doing. That's a real insecurity on their part. I assume they have their own problems. We never know what peoples' home lives are like.
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...and we never know what mind-altering medications people are on. And... it doesn't help that the moderators are just pro-treament BC patients either.
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Ok...nastiness prevails once again. I'm not on drugs and I don't believe the mods are conspiring against alties. However, I do believe it's a mistake to promote some black goop as being some sort of tumor expeller when there is no evidence of that....none. If Chilli wants to try alternatives, that's great for her. If you want to support her, great. But claiming its doing something without proof is dangerous. The uninformed may believe it.
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Thenewme said this "In my very humble opinion, it's unconscionable to stand by and watch someone self destruct without having the integrity to intervene." I feel exactly the same way - Himalaya really didn't want to have surgery, it is not wrong to try and encourage her to do it. Maybe if Chillipadi had had people encouraging her to have surgery, she may not have ended up in her situation and she sure wishes she could go back and make that decision again.
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Ok, so I take mind altering drugs.
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Saying people should be nice and then slamming their home lives or implying they use mind-altering substances just doesn't seem nice to me. Or are there two sets of rules?
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Rosemary, I really don't know what mind altering drugs have to do with this topic. I guess if you're on any kind of drug your opinion doesn't count? Logic doesn't exist?
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Apparently, Blue.
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Really intelligent/educated women probably wouldn't be fooled by the wild promises some alternative treatments make.
It must be all of the supplements I take if I sound like I'm on drugs
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Really, if we are all so in favor of being supportive, regardless of where you fall on the alt/conventional spectrum, let's stay away from inflammatory statements regarding medications and conspiracy theories about the mods. Caryn
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Supplements Susie? You're a novice. I think Zuvart was referring to me. I guess you can call L-Dopa a mind altering drug. heheheheehe! IT just helps me move! I take no offense.
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I would like to post an apology for my comment. I'm sorry for implying what I implied.
What I don't understand is why the conventional girls visit the alternative threads at all. Why bother coming here? I don't visit the chemo or radiation threads ever. Why should I bother? Those treatments are not for me so I don't need to waste any time researching something that I don't feel is going to make me better. I do lurk on the afinitor everolimus thread only because my Onc wanted me on that trial so I was curious to see how it is playing out for the participants. I keep my opinions to myself. I certainly would never dream of saying anything because what would be the point of that? I've chosen not to go that route and they have and that's OK.
Again, I'm sorry if I offended anyone.
Thank you Joy for starting this thread. We are very fortunate to have someone as eloquent and diplomatic as you in our corner. Have a good sleep!
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Kat,
Your apology is much appreciated. It takes a real "mensch" to do that in a public forum. I also wonder why people who are opposed to alt therapies come to the alt threads. I have been interested in complimentary tx more than complete alt but I am always interested in learning new things. And yes, I do take quite a few conventional meds as well as supplements. I'm doing very well, am very happy and hope to remain that way!
Caryn -
You answered your self right there exbrn, "I am always interested in learning new things." That is why I read the alt threads anyway. I'm still a noobie with all this stuff and am trying to learn as much as I can about all aspects of treatment. I don't know if alt is the way to go because I don't know anything about it. The same with conventional treatment. I am clueless.
All the wonderful ladies on here, alt and conventional, are such a wealth of knowledge I would be stupid to pass on the chance to learn from them. So I read it all, and try to figure it all out.
EDIT: Missed the part where it says "people who are opposed to".
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My question and I think the question that many have (if I may be so presumptuous), is why those who are so vehemently opposed to alt therapies come to these threads. Caryn
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I can only speak for myself...I've been coming to these threads because I found I was unable to take tamoxifen, and wanted to know what the consensus was on a natural alternative to it, as I also didn't want Lupron shots for fake menopause & an AI. There are some threads that drew me in, and I have kept reading them.
If I'm not welcome here, Kat, its no problem...yours WAS one of the threads I looked forward to reading, but I'll be more than happy to leave.
Personally, though, I do believe that its good to learn about different ideas and treatments, and to see other people's thoughts. I was always taught that intellectual curiosity is a good thing. And I've always felt that whether people agree or disagree, as long as its done respectfully, discussing things is a good way to make your own decisions. It forces you to look at pros and cons, and you might learn something. Being close -minded and not willing to listen, or learn is never a good thing - whether you're talking about cancer or any other life experience. And that works both ways - for both mainstream and alternative treatments.
People are people. We are each fighting this disease the best way that we feel we should. If done respectfully, there is no reason not to express one's thoughts and feelings. Debate is healthy.
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I agree with Maud's comments to the moderators. Make this a closed group for those that truly are using alternative therapies whether alone or in combination with conventional medicine and block the Debbie Downers.
What still confuses me is you have conventional medicine that DOESN"T WORK all the time so why does anyone have a problem with alternative medicine or ideas? And if you decided to throw conventional medicine out the window Momine and go with the sticks...I would cheer you on and respect your decision. It is your life. And who are we to judge how anyone here on these boards walks this journey? We all have our fears. And there are enough cases of people using ONLY alternative medicine to heal their cancer and it has worked. It won't work for everyone just like conventional medicine has not worked for everyone.
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Speaking for myself only, I come here to sift through information in hopes of gleaning some useful nugget that may help me to avoid recurrence. I'm triple negative and I've already done everything I can via conventional treatment but I'm still at high risk for recurrence, so I'm relentless in my research to find things that might give me an edge. I like to leave no stone unturned. I too am interested in learning new things.
When I was first diagnosed, I knew nothing about BC and had a very open (yet skeptical) mind regarding complementary therapies. I still keep looking, but I have to say I've mostly been fairly disappointed by the lack of evidence for any treatment that isn't already pretty much mainstream.
Since I have done so much reading and research for personal reasons, I do recognize misinformation when I see it. It's not about bullying or denying someone their choices or maintaining the status quo. It's about helping to provide facts and evidence-based information in support of making informed choices. I have nothing to sell, no unsavory agenda, no reason to even get involved in these tiresome "attacks" other than a sincere desire to share some of what I've learned with other BC patients who might appreciate the support.
ETA - Sorry, Momine, but I wouldn't cheer you on. I'd give you some evidence-based information to show you why I couldn't agree with your stick treatment and try to offer some suggestions that might have a better risk-benefit ratio, and I'd damn sure encourage you to discuss your options with a doctor. If you still chose the sticks, I'd struggle to support you the best I could.
Dx 11/2008, IDC, 5cm, Stage IIb, Grade 3, 0/9 nodes, ER-/PR-, HER2-
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The Right to Choose Your Cancer Treatment
http://well.blogs.nytimes.com/2012/06/13/the-right-to-choose-your-cancer-treatment/
Cancer | By BARRON H. LERNER, M.D. | June 13, 2012, 2:48 pm- Print
Babette Rosmond
Before there was Betty Ford, the outspoken first lady who brought breast cancer awareness to the wider public, there was Babette Rosmond, a diminutive New York City writer and editor who went public with her diagnosis of breast cancer 40 years ago, three and a half years before the first lady. If Mrs. Ford is remembered for her grace and honesty, we should remember Ms. Rosmond for her courage and persistence. What Ms. Rosmond demanded of her doctors - the right to choose her cancer treatment - is now the minimum that cancer patients deserve.
When Ms. Rosmond discovered an olive-size lump in her left breast in February 1971, she was 50, the author of six novels and an editor at Seventeen magazine.
It so happened that Ms. Rosmond had two friends with breast cancer, both of whom had experienced psychological and physical side effects from radical mastectomy, the extremely disfiguring operation routinely used by surgeons to treat the disease. The operation removed not only the cancerous breast, but the underarm lymph nodes and both chest wall muscles on the side of the cancer, leaving women with hollow chest walls and swollen arms. Moreover, the decision to perform the operation typically occurred during intraoperative biopsies, when women were under anesthesia and had no voice.
Ms. Rosmond would have none of this. She essentially bullied a surgeon into performing only the biopsy. When the tumor turned out to be cancerous, he told her she needed an urgent radical mastectomy.
Ms. Rosmond demurred, asking for three weeks to consider her options. The surgeon, who had never before encountered such resistance, called her a "very silly and stubborn woman." Then he played his trump card. "In three weeks," he said, "you may be dead."
Fortunately for Ms. Rosmond, a few surgeons had begun to rebel against the one-step radical mastectomy. One was Dr. George Crile Jr., of the Cleveland Clinic, who had concluded that the radical mastectomy made no sense for smaller cancers localized to the breast, which were becoming increasingly commonplace because of better screening and awareness. His own studies suggested that a simple mastectomy that removed only the breast was as effective for such cancers. He also offered an option of a partial mastectomy - an early version of today's lumpectomy - for women like Ms. Rosmond whose cancers were very small and localized. The point, Dr. Crile emphasized, was that no one had proved that more surgery was better.
Ms. Rosmond had a partial mastectomy and was very content with her choice. "To me, the breasts yield aesthetic pleasure," she later wrote. Keeping them had been "useful and rewarding" to her and avoided the painful experiences of her friends. Dr. Crile told Ms. Rosmond that most women making this choice also had local radiation to prevent recurrences, but she declined.
As a journalist, Ms. Rosmond knew a good story, and she soon published "The Invisible Worm," an account of her experiences, under the pen name Rosamond Campion. The book's subtitle boldly announced her message: "A Woman's Right to Choose an Alternate to Radical Surgery."
Ms. Rosmond died in 1997 at age 75. Her breast cancer never recurred
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"Judgement" is subjective. It's entirely different and separate from questioning or pointing out facts (objective).
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From my point of view debate and discussion are not the problem. It's when things devolve into name calling, nasty implications and disrespect that the problems arise. As far as helping to provide facts and evidence based information, this may not be a priority for those seeking alternative treatments. Furthermore, they are adults who are probably capable and intelligent enough to research these things themselves. This is the alternative forum for those who have made a conscious choice to not use standard evidence based treatment. Why would anyone who does not subscribe to those views come here to say otherwise? Caryn
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PattyGroves (or is it mattygroves?),
I haven't seen anyone here trying to take away anyone's right to choose treatment. Where does that notion keep coming from?
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Oh, thenewme,
We've told you before there is no such thing as facts, just information that changes from day to day.
This years facts are nexts year's ineffective treatment. It's really hard to enforce facts when they don't exist. Good luck anyway!
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Caryn,
For those posters whose priority is not facts and evidence, my username is one they should add to their "ignore" list.
As to your statement that "...they are adults who are probably capable and intelligent enough to research these things themselves," I think that's unfortunately not always the case. In addition, even after researching things for ourselves, it's still possible to be mistaken, confused, or misled.
Anyway, I've been the target of a lot of the namecalling, nasty implications, and disrespect that you mention, so I completely agree with that. I also know of "conventional treatment" people who have left BCO because of it, and it's a frustrating experience for sure.
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Sue, from what I recall, your encouragement to the women who haven't had surgery has been very kind and respectful. Many have tried and none have succeeded. It seems that people make their mind up and nothing seems to sway them, in fact often they just become more convinced they are taking the right course of action. That's why negative remarks not only don't help or persuade the person, but they upset readers and create a bad atmosphere.
In the three years I've been a member I've seen equal treatment of members by the mods, with those from both alternative and conventional deleted or suspended. Hey, they even deleted me on the last page!!!
I imagine they've been pretty busy with this thread and I'm thankful they are there to keep some sort of order.
Blue, thanks for your concise and amusing comments. You'll have to give me lessons in how to sum up my thoughts in a few words.
Wishing you smooth moves.
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The Mods seem to have the best advice:
"We'd like to perhaps suggest that those members who really disagree with the use of alternative forms of treatment not participate in the discussions in this forum. "
For those looking for information, fine, read. But it has come to the point where the skepticism is preventing some women from participating in this Alternative Forum, and I don't think that's fair. I also don't agree that "intervention" is always an act of "integrity." It can also show a lack of respect for another woman's choices. Now that there's a COMPLEMENTARY Forum, it really does seem important to allow the Alternative Forum to be primarily a source of information for women looking for Alternative treatments for bc.
I hope the Moderators will think about putting their suggestion in the wording uder the Alternative Forum heading.
I think most of the women on BCO who have had chemotherapy, radiation, or hormonal treatment would feel attacked if those choices were denigrated on Forums dedicated to them.
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thenewme,
I really don't want to get into a dust up with anyone but I think you are the perfect person to answer my question (though I don't presume you speak for anyone other than yourself). Since this is a forum specifically for those who eschew standard, evidence based treatment, why would someone who does not agree with that path even be here? As to adults being mistaken, confused or mislead with respect to alt tx, they are adults and free to make those mistakes as well as live with the consequences just as they would with conventional tx. I don't mean to be disrespectful or argumentative, I just find this whole thing completely baffling since this is the forum one comes to if alt is your thing , not to argue against it. Caryn -
Well said sunflowers! Caryn
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Very wise suggestion, Sunflowers.
If I'd had, chemo, rads or hormonal treatment, I would feel I had invested my heart and mind in it and wouldn't want my choices invalidated by somebody who thought they knew better. I would want support that it was my choice. Live and let live.
The respect should work both ways. I don't know why some people feel morally obligated to enforce their values on others unless they have insecurities.
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