How can we make this truly safe, supportive, judgement-free?

orange1

Mardibra -

I don't understand why you say there is no evidence that the black salve will remove tumors.  Chili has reported that some of her treated tumors have fallen off.  That is evidence.  I don't blame her for wanting those nasty things off her chest, I would too.  I think if I were in her situation, I might give it a try.

Some posters that often (wisely) question the effectiveness or safety of some of the alternative treatments don't see the value of getting what you want - just because.  Chili wants the tumors off her chest, the treatment is providing that.  She also wants to be cured.... I can't say I believe her treatment will cure her, but she has nothing to loose.

Though Chili's treatment choise is rational in my opinion, even if it weren't, I would defend her right to have it as long as she is aware of the risks. 

thenewme

IMHO, it shows a terrible lack of respect for another woman's life to not share applicable facts about her life and death choices. 

The complementary forum is substantively no different from the alternative forum, and facts aren't allowed there either, so it's clear that there is no real place for someone like me here.  Wow.

thenewme

Caryn, I answered your question on the last page about why I personally come here to the alt forum.  This thread is pretty busy, so maybe you missed it.   

ETA - BTW, thanks...I'm not looking for a dustup either.

NattyOnFrostyLake

Some might say it's disrespectful of another woman's life to keep hounding her with arbitrary information formerly known as "facts."

People generally are not appreciative of being "straightened out." I hope you understand that. It isn't really working.

Sending kindness and love your way.

Anonymous

thenewme, it really becomes a "circular argument" - there are so many things we experience which we can't "prove."

I see an acupuncturist and treatments have eliminated the joint pain and neuropathy I was having as an SE of Arimidex.  I don't feel it's possible for me to "prove" this to anyone who doesn't accept the validity of acupuncture.  While I respect your need for facts and proof, there are too many situations where that really isn't possible.  How can I "prove" the value of acupuncture?  You'd have to accept my experience, and that probably wouldn't be called a "fact."

I respect your intentions to help, but I don't think it's a lack of respect, to allow every woman to make her own choices, based on the criteria that is important to her.

thats-life-

Statistically Sue, it is 'intelligent/educated/middle class women who are most likely to try or be interested in alternative treatments. You can google  for that statistic, or i will for you when i have more time. I feel the most frustrating aspect for me when it comes to the need to discuss alternative treatments (and its an important topic to discuss) is that stage IV women and men have a very different situation. We have been told that conventional medicine cant cure us. Only at stage IV would you be able to comprehend how that feels. We are also aware that overall survival is hardly increased by the many treatments we are put through, and yet we do them...believing, hoping that those conventional treatments will work, for a while, as reesie said.

I want to talk about, discuss, disect, every alt and conventional option...but i have been so disheartened by the crap here, that i am very hesitant now to post anything. I have seen some of the above posters laugh and joke about having a go at a new alt poster. Im not so convinced there is genuine concern. This is not a laughing matter, This is very important. 

Thenewme: diet can help with triple neg BC, have you read the study results in the stgae IV alt thread?, please do, and let me know if you feel they are unproven.

thenewme

Sunflowers, your example of acupuncture is perfect.  Of course you don't need to "prove" it works.  But that's hardly comparable to the scenario we're talking about here.

Once again for the record, I'm NOT in favor of taking away anyone's right to choose, based on whatever criteria they have.  

You're right, though.  This is a circular argument.  I'm out.

1Athena1

Joy: I feel safe when you post. You are a voice of reason.

What part of "mind your own beeswax" do people not get? You are NOT going to convince people of your point of view simply because you strongly believe in it. The Crusades should have taught us that - I am not joking.

I think people have to understand boundaries. Unspoken boundaries. There are just areas in another person's life that we don't have a licence to tread on. I simply cannot understand the narrow mindedness of conventional diktat with an incurable disease that kills 1/5 to 1/4 of those who get it regardless of treatments. I further fail to comprehend how people use their belief in science to act like Spanish Inquisitors. I don't get it, and I did the conventional treatments. The science is far from settled. People and individual circumstances are unique and we need to learn tolerance. 

Living with cancer IS living with uncertainty. If we were talking about a completely curable, easily treatable condition, I'd understand the conventional narrow-mindedness, but cancer is a mystery even to our oncologists - the good ones have no problem admitting as much. That's why so often they go by stats - often because it's all they have. I am not belittling their know-how - I have an onc myself, but for Heaven's sake, let's recognize the complexities and limitations of what we are dealing with here. 

By the way, the same applies to any altie who preaches the diktat of alternative medicine everywhere and tries to belittle conventional methods - just as narrow and rather more concerning. I find flat earth-ers....let's just say, worrisome.

CLARIFICATION: It's ok to share our knowledge and wisdom. And I agree with correcting fact errors and misstatements of general knowledge (eg: "the heart is in the brain"). But it's NOT ok to push and push your advice when it is clear that the person has heard you and decided differently. It's this domineering pushiness that I can't understand. It's obnoxious, off-putting and ineffective. If someone comes to you for advice, that is one thing. But if they don't and you have spoken, and they still decide differently, BACK OFF.

These unspoken boundaries are hard to see in a support forum where we all come to disclose information that many of us don't disclose in real life, but they are there, and they need to be respected.

Finally, I don't think it's proper for us to discuss or speculate on the choices of specific individuals when we know they are not here conversing with us.

One more thing....BLUE: Maybe they were referring to me - lol. And all I can say is, the world is a better and safer place with me on mind altering medications!

Lucidly,

"A"

luv_gardening

Beautifully said Sunflowers and Caryn.

Natty, you bought up invalidation. Precisely.  We have to put up with enough of it from friends and family and come to the forum for emotional support, not more invalidation.

I sometimes wonder what it would be like to visit a third world country where people get minimal treatment if any, and people with untreated deformities beg for money from tourists.  I belong to a Facebook page for one of my primary schools that I attended in Zimbabwe, Africa from age 8 to 10. The school was for white immigrants only when I was there but now is mostly black natives.  There is constant talk about the inhumane thrashings they get there as punishments from teachers where they can't walk for days afterwards. I have to refrain from advising them that it's not acceptable in developed countries.  We all want to rescue others to some extent, but people and countries alike need to learn in their own time.

I believe this forum problem all stems from others wanting to rescue those they feel are somehow disadvantaged or misinformed. I couldn't help those in other countries by telling them they've got it wrong. It's not our job to do that.

thenewme

Thats-life,

Thanks!  Yes, I've read about diet with regards to TNBC, and I do consider it very useful and (dare I say it...?) proven.  In fact, it's not alternative or complementary at all.  It's completely mainstream.  I'm also in the ENERGY clinical trial, in which the aim is to investigate the effects of healthy diet, exercise, and lifestyle on recurrence.  

1Athena1

That's-life - Your observation about who uses alternative therapies piques my interest. It's late in my corner of our planet, so I can't easily find data on it right now.

Here is some information from the US government. The problem is that they don't distinguish betwen comp. and alt - but here it is, FWIW:

Many CAM approaches are used by a large percentage of people in the general public and cancer patients.

The 2007 National Health Interview Survey reported about 4 out of 10 adults used CAM therapy in the past 12 months, with the most commonly used treatments being natural products and deep breathing exercises.[2]

One large survey of cancer survivors reported on the use of complementary therapies.[3] The therapies used most often were prayer and spiritual practice (61%), relaxation (44%), faith and spiritual healing (42%), and nutritional supplements and vitamins (40%). CAM therapies are used by 31-84% of children with cancer, both in and outside of clinical trials.[4] CAM therapies have been used in the management of side effects caused by cancer or cancer treatment.

Source: National Cancer Institute

http://www.cancer.gov/cancertopics/pdq/cam/cam-cancer-treatment/Patient/page2

Mardibra

Orange - just because a website and one poster says its true doesn't make it proven fact. I could create a website in an hour stating that banging your head against a wall will eliminate brain tumors. Just because it's written, doesn't make it true. As someone else mentioned, if the black goop is actually expelling tumors then let a medical professional check it out. The goop is clearly doing something but it's not clear what. If Chilli feels it is doing something for her, then great for Chilli...she should continue. But, let's not mistake it for fact.

sweetbean

I have to say, even though I feel that the studies on diet and BC have proven that diet can be an important factor, just try wandering off the alt and complementary forums and say that.  See how far you get.  I can pretty much guarantee you that for every one person that agrees with you, there will be ten who say, "I-ate-just-fine-and-still-got-BC-so-I'm-not-giving-up-pizza-because-then-cancer-will-have-won."  Or some version thereof.  Trust me, most women on this site do not consider this settled science, despite a lot of studies, and they get quite offended if anyone suggests that diet makes a difference.   And considering how useless my nutitionist was in terms of diet and cancer, I'd be hard-pressed to say that the anti-cancer diet is now mainstream.

riley702

Athena, I think your comparison to The Crusades is right on the mark. Each side fervently and sincerely thinks theirs is the only true way, that "God is on their side" metaphorically and that they're going to "convert" you for your own good.

And I'm in the 'mushy middle', thinking each has some good points, but neither is the ONLY answer. I'm obviously not opposed to conventional treatment, and in fact lean heavily in that direction. But I am open to whatever might help me avoid a recurrence or make my daily life a little easier. If that's alt., so be it. I think I'm capable enough to sift through information and decide for myself. During the REAL Crusades, both sides would have considered me an 'infidel'. As unpleasant as this has been at times, I'm glad it's "only" a war of words. And now I'm out, too.

thats-life-

thenewme: i wasnt claiming diet was an alternative practice, i actually just wanted to make sure you knew about the studies. Sweetbean, its very true that when some innocent mentions a change in diet etc on the stage IV forum (where i frequent) there is an eerie silence, or eventually a few comments to the effect you mentioned. I have no idea how to change the pervading atttitude to discussion about our therapy options. Unfortunately, im sure many women and men, like me, end up researching in private, coming to our own conclusions in private, and journeying in private. Quite sad, when we could have such a healthy, informative, balanced forum.

thats-life-

Hi Athena: different socio economic groups use different 'alt' 'comp' therapies. odd that prayer is considered a therapy. Prayer is used in large % in certain groups, alt treatments by others,  i have hesitated to post this information in the past...but wanted to respond to sue's comment on the intellectual capacity of those who explore the options. The study i found was looking at who uses alt therapies. I had it on my old comp., and lost it in transition via usb! 

Hindsfeet

I'm thrilled to see that's life is back. She too is a voice of reason. She's been around the cancer corner and back. I appreciate her perspective. It's people like that's life that make the alternative threads balance and real.

I don't know how many times I've been to the alternative threads and seen the same group of naysayers jump all over someone recommending an alternative, or using alternatives like black salve. My goodness, we don't jump all over those who choose convetional harsh treatments that could hurt them with some horrible side effects.  I say glorybe if it's working for chillipad. Just remember convetional medicine doesn't always work...this is working for her...I'm happy. We need to happy when something is helping someone no matter how it happens. This is good news.

If I posted on the Stage IV thread, I am sure the mod's would ask me politely not to post there and or the ladies would asked me not to. Actually, one time this happened. I didn't post on the stage IV forum, but someone thought I did and jump down my throat. I'm not going near there. I know better. I would hope for those of us who choose either both alternative/conventional, or alternative alone would have a forum like the stage IV ladies.

I know that if I was doing something insane one of my alternative bc sisters would pm me and ask me what, why and given me reason to consider problematic concerns with a choice I made. They are not going to put me down here or call me a quack or stupid. Not all of the alternative ladies agree with one another, but we respect one anothers research and choices. We are here to help one another find our way through our cancer journey.

Stormynyte

I'm slightly offended by the comparison of the Alt topics and the Stage IV topics. I have a choice to use alt treatments or not. I don't have a choice about being Stage IV. I'm sorry but they are not the same.

Momine

Kat, that was a nice apology.

I am not "against" alternative treatments. Not at all. When young, I had recurring yeast infections. I would go to the doc, doc gave me monistat (also given for chemo thrush, btw), symptoms went away and then returned the next month. I finally solved the issue by quitting birth control pills and taking acidophilus.

I would love to know what alternative therapies are out there and which one work. The chances of my cancer being back one of these days are really good, and having been through very aggressive treatment, my options will be somewhat limited in the second round. However, I have always approached conventional and alternative therapy the same way, i.e. I question both and I want a sensible explanation of the whys and the hows.

There seems to be quite a few alt people who subscribe to the idea that if it is "natural" i.e. a herb or root or similar, then it can't harm you. This is obviously silly, and "chemo can harm you too" is not a reasonable response.

Another idea that seems prevalent is that alt treatment should be taken as is, on faith and if you even dare ask how it works, you are an "unbeliever" and should be gone. This, to me, is really not a serious approach. We are talking cancer treatment here, and I will no more take some herbal supplement on faith alone than I will take chemo or do rads. 

As for comments like "there are no facts" or suggestions that alt treatment is by definition NOT evidence based and that this is just fine, I admit that I simply do not understand this way of thinking, nor do I in any way think that you need to think this way to be interested in and use alternative therapies. I would call it "magical relativism," and I do not see why one should have to subscribe to it in order to try to learn about alt strategies.

Momine

double post

Momine

About the diet stuff, it seems clear from all I have dug through that keeping blood sugar low and steady and staying thin may both help prevent cancer recurrence.

As a result I have adjusted my diet significantly. My doctors are in favor, but simply not very knowledgable about diet. I have found this to be the case with doctors generally. I find it odd, but such is life. A couple of mine told me to go easy on the sugar. They had obviously seen the studies, but didn't really know how to translate that to practical advice. It is not sugar itself that is the problem, but rather blood sugar. The most responsive and helpful of the docs was one of the onc residents, whose mother has type 2 diabetes. 

However, although I am convinced that diet can be helpful and beneficial in holding the cancer at bay, diet alone can't cure cancer and I can completely understand why someone with stage IV may choose not to go nuts with the diet stuff.

luv_gardening

The debate around alternative vs conventional is interesting but not the topic of this thread but brings up an important point.  Even if people using alternatives were not very bright and not educated, they would still have the right to be left in peace and not treated with condescension.

Eve, You mentioned how people didn't use the stage IV forum if they are early stage.  In the same way, I doubt the christian groups would appreciate an atheist going there telling them the "scientific facts" and implying they are misinformed.  Would any of us go on the lesbian forum and tell them "scientific facts" about the birds and the bees?  It seems alternative health choices are one of the areas where minority groups are being harassed but we (society) haven't yet realised the problem. 

Since we legally and morally have the right to choose our own treatments it seems like a cut and dried case of discrimination if anyone makes disparaging comments about our choices.

People have the right to keep their medical records confidential for a reason.  It's a private area of our life that we are sensitive about.  That's why it feels so awful when someone oversteps our boundaries and criticises us.  Thanks to Athena for talking about boundaries.

Sorry about the bold but I think this is the crux of the matter.  

Momine

Joy, I completely agree with you that there is no excuse for disparaging comments, nastiness and name-calling.



Where I have trouble with your comparisons is in the fact that cancer treatmnet is not a matter of faith. This is the alt board, not the faith-healing board.



Absolutely people should be polite and respectful, but I honestly do not see how, for example, asking how a given supplement acts in the body is either nasty or disrespectful.

luv_gardening

Momine I agree, just as no one would mind if I asked someone a religious question. That's a general enquiry. But when someone tells me or implies I'm using the wrong treatment then they have crossed a boundary.  And if people constantly come on here asking the same things, questioning our integrity, then it feels like harassment.

As far as knowing how an alt treatment works, that's nice to know, but they didn't know how aspirin worked till relatively recently.  The fact that it worked was good enough.

luv_gardening

People have a belief in a set of principles, I can't think of the right words now, but the beliefs are strong. Whether those beliefs are about the importance of celebrating a public or religious holiday, the need for cleanliness, how we treat our environment, vegetarianism, anything really, they are deeply ingrained and dear to our hearts.  We all want our deepest beliefs accepted, and often those beliefs are part of a system of beliefs such as how we raise our children, politics or religion.

Maybe someone who has studied sociology can help explain what I'm trying to say.

sweetbean

Hi thatslife!  Glad to see you back!  What gets me is when people say, "Well, diet can't cure or prevent BC, so I'm not going to include this in my cancer-fighting strategy."  As if ANYTHING we do can cure or prevent BC.  If we knew what could cure or prevent BC, I bet we'd all be doing it.   And yes, Momine, I feel the studies are strong about blood sugar and weight in terms of cancer, not to mention the other benefits, like reducing your risk for a bunch of other illnesses and injuries (even 5 extra pounds starts to stress out your knees).  But I think it can make a difference for women of all stages of cancer.  But I'm off my soapbox now.

Anonymous

Once again, I think the Moderators had the best advice:

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. "

This is the Alternate Forum, not the "Prove it Works by MY Criteria Forum."  I read for information, and will research what  interests.  I don't accept or reject based on anyone else's criteria.  There is no RIGHT or WRONG about this Forum.  PLEASE, PLEASE can't we at least agree that this Forum should be a welcoming, SUPPORTIVE place for women with bc seeking information about Alternative information.  Everyone is free to apply their own criteria to the information in their own life, but I don't think it's fair to apply an individual's criteria to the Forum.  Trying and failing to say, please keep your skepticism to yourself, if you don't want to try what is being discussed, then don't, but please don't subject the poster to your own criteria especially when it is so harsh, and critical of what is being discussed. 

A woman who had TRIED everything, maybe later in her treatment, but she was seeing a doctor who gave her no options, why denigrate what she WAS willing to try?  Salve is a very different word than "goop."  While I may not want to use it, I honor this woman's courage and FIGHT FOR LIFE and think this Forum was created as a SAFE PLACE for her to post, and expect support, a person with no options left was subjected to criticism for what she was trying to do to heal - AND expected to justify HER CHOICES to other women who were skeptical of it.  

Thanks again Joy, for trying to create a SAFE place.

KatRNagain92

Joy and Thats-Life...I believe your main sound bytes are that it makes no sense for folks to undermine anyone's confidence with their treatment plan.  I also believe the Mods are on board with this as well.  I love the idea of creating a caption to the forum in regards to just that very thing. 

Last night my husband and I watched "Contagion"  with Matt Damen, Jude Law, Kate Winslet and Gweneth Paltrow.  The parallels between conventional and alternative methods are really quite similar to what we have going on here. Jude Law was the alt guy and Kate Winslet was on the conventional team. I wish it were wrapped up in a nice neat bow at the end but it wasn't and truthfully, I don't see how it could be without the directors taking a stance one way or another...which they did not.

Sweetbean, your soapbox is a good one.  Removing sugar from ones diet should be the first thing anyone diagnosed with breast cancer should implement.  At the very least, being sugar free has dramatically improved my overall sense of well being. 

A friend in my offline community was a stage III esophageal cancer. He is now a stage IV. They are waiting to try yet a new chemo combo on him but he has to have his big toe amputated first since a callous that he had on it became infected down to the bone. He stated "all from a callous gone bad probably from chemo"  Unfortunately, osteomyelitis (infection of the bone) is very difficult to treat...Usually 3 months on heavy duty IV antibiotics but he doesn't have 3 months to spare for that treatment so they're going this route.  He is a huge proponent of chemo and he can't wait to get started on his new round to "cure his cancer." 

All I can do for him is offer my support and prayers.  It would be unacceptable for me to even broach an alternative subject with him. 

exbrnxgrl

Well said once again, sunflowers. Those who are committed to alt tx whether as a first line tx or as a last resort are not looking for paternalistic "help, advice and truth" that some feel compelled to offer. And they certainly are not going to be swayed when that info is offered again and again even after it's been made clear that they have chosen a different path. Joy brought up the Christian ladies forum earlier. I have never read it but I don't imagine that atheists or non-Christians are going there and knocking their belief in the power of prayer (at least I hope not!). Perhaps if someone feels strongly about exposing what they feel is fraudulent about alt tx, they can start their own thread outside of the alt forum. I hope we can carry on on all bco threads with civility and respect for personal boundaries. Caryn

Momine

Brnxgirl, I think this is where I get really confused basically. What your statement says is that alt treatment is based in belief rather than in rational choices and that it should be accorded the same respect and "hands off" as religious belief. Joy touched on a similar theme. If this is really your conviction, then I can see how any questions at all about any therapy would be deemed offensive. However, outside of actual praying and faith healing, it never occurred to me to think of alt treatment this way.



By the way, thanks to everyone for engaging in this discussion frankly and respectfully. Hopefully it will help to understand everyone's views better.