Simply reposting a thought from a censored thread

1Athena1

The terms "slash, poison and burn" were coined by none other than Dr. Susan Love, MD one of the most respected authorities on BC. Far from inflammatory, they are well known and not new. The intent of these terms is to make the point that breast cancer treatment continues to be a war of attrition against the cancer; that our understanding of the disease itself remains slim and that all we have are therapies that destroy and not necessarily ones that heal. It is a commentary on the state of the science; NEVER one on the women that endure such treatments.

I would highly recommend the documentary "Pink Ribbon Inc." The idea is not to criticize conventional treatment, but to point to the limited options we as BC patients have. That intent is never to criticize womens' choices. That should be sacrosanct. The sad fact though is that if you get BC, your choices are not very good.

I took the treatments that were available.

I think WOM has been maligned. However, Mods, I think taking this thread off Active Topics contributes to "Pinking" - the Komenization of BC in which only the rah, rah, rah positives are shown. I know that's not your intent. But patients dx'd with a life threatening disease deserve to be treated as men would - with intellectual respect. They should be afforded EQUAL access to the good, the bad and the ugly.

I never realized how sexist American women were until I got BC. Every other illness I had, the literature treated me with respect. I get BC, and I see pink crap, "you'll be ok" crap and other lies....

People need to know about these "fights." I don't have a dog in this fight. I took what conventional I could believe in and tolerate and what complementary made sense to me, and went with it. My superb medical team had the wisdom to understand the scientifically ambiguous territory in which we all stood and respected my choices. Their advice to me was ethical and well intended.

But the fights we have here stem from the fact that we are dealing with a disease with no known cause, cure, no unified etiology and that confounds us all. People deserve to know this.

But WE must also bear in mind that we are more united by our desire to rid ourselves of cancer than we are divided by our choices.

Again: what unites us is stronger than what divides us. Let's remember that.

Let's not jump on other people's choices as though we, smugly, had the answer. We don't. We only fool ourselves if we believe otherwise. Remember: there is no KNOWN cure for BC, no KNOWN cause either. We are each doing our best. This is the bottom line.

newfmama

Well stated.  

exbrnxgrl

I like that, "We are each doing our best". Let's take that and add a generous helping of kindness and respect . Caryn

Moderators

Athena and others, we have locked that thread, and have asked WOM to please repost her question. Sometimes a new start can get things back on track. 

Lifeafter

Excellent post.  I have no idea what thread was locked but your post can be interpreted to be about any of the other heated threads here.

"But patients dx'd with a life threatening disease deserve to be treated as men would - with intellectual respect."

Well said!

Michelle

camillegal

Good post--it's kind of funny (not at all) when my Mom had cancer in the 1950's well the word wasn't even said, but I was very young and I don't think they staed it then or made all the groupings they have now, but my mom's was probably caught the day after she got it, she had a full mast. and no chemo-Nothing and lived another over 40 years. But i do remember My aunt and her talking about it quietly and they said how could they not know what makes this happen --so they didn't know then and they really don't know now---What a wicked disease.

cheryl1946

Very well said Athena.

wildrumara

I know several women who are from the "slash, cut and burn" generation who have lived 40+ years with their cancer.  Hmmm???    I have been slash and cut but Im not letting them talk me into "burning". 

pupmom

I was slashed and burned but my MO ruled against poison. Guess a few of them aren't under the thumb of Big Brother, er Pharma. 

Mardibra

I've been slashed, poisoned and burning is coming within the few weeks. I'm fine with doing all I can do to make sure I survive this. I'm not into conspiracy theories.

Ang7

Agreed.  Do whatever it takes to be with my family...

rosemary-b

My medical onc is not under the thumb of big pharma or anybody else.

ali68

Ladies when you talk about slash, poisoned, cut & burn it scares the f****ing shit out of me. I have had Cancer from December 2011 and I'm still scared. What do you think new ladies will feel like reading this. Can you remember what you were like in the beginning how scared and frightened you were.

Maybe you think it's ok but me and others reading this think how horrible it sounds.

Sorry if you guys don't like what I've said but as you say, we must all have our say.

Mardibra

Ali - your right.  This "slash, burn, poison" stuff is from another poster on the old thread.  I wasnt happy with that terminology and said so.  Mentioning it here was intended to be sarcastic but didnt come across that way.  For my part, I apologize.

etherize

Wow, Athena, I became "acquainted" with you and your eloquent posts just this weekend, after spending hours reading the now-locked thread.  I heartily applaud you for reposting your thoughts here.

I'm disappointed that thread has been "locked" as I learned so much from it, and didn't have a chance to finish reading it.  The OP may have been maligned on a page that I didn't get to -- but what I read was earnest women (and one man, I believe) trying to come to an understanding of what we are facing, and what our choices are.  Occasionally someone got their feathers ruffled, but it was quickly resolved.

Again, I'm very sorry that thread has been "locked" as I think there was a lot of value in it.  

Ali68, I don't think you should be scared by three words.  I am scared, too, but I'm scared of the realities I face, not words used in these forums.

edited to add:  I am not a die-hard proponent of either conventional or alternative treatments.  I think both have their place and everybody has a right to choose what's best for themselves. 

pupmom

Hi Ali, I agree with Mardibra. My post was sarcastic, in reference to what others have said who are totally against conventional medicine. I can tell you and everybody else that the "slashing" and "burning" was nothing like those terms imply. I recovered from surgery easily and you can't even tell from my skin that I received radiation. SO sorry if I scared you and others! 

ali68

Maradibra, now I know that's ok it just sounded horrible.

Etherize, I haven't had surgery or rads yet and I'm pooing my pants just thinking about it.

I am very worried about rads as I have very fair skin and bad solar urticaria.

1Athena1

That thread crystallized a lot that is discussed elsewhere -both conventional and alternative-- on this site. Some of us had posted valuable information about prevalence, etc....toward the beginning of the thread. WOM's situation brought out the hopes and fears of many - and the personalities. It's what BC is, for better and worse. It was a conversation that deserved to cotinue, but likely won't now.

Mods, you can't really expect WOM to feel free to post her question - "have others with my dx. done alternative treatment" and feel safe in being responded to any differently, can you? With all due respect, isn't that being a bit disingenuous? The OP was accused, at various points, of

--not having her childrens' interests at heart (accusations levied by total strangers)

--lying, 

--secrecy,

--holding back information on the cure.

And it goes on. Is that the way you treat your neighbors? Who DIED and made some of you feel free to speak to someone like that???? This is not the Roman coliseum and she is not an enslaved fighter. Just a patient, like the rest of us.

And it's not a healthy or constructive way to project your own fears about your treatment choices, which I think lay at the heart of some of the criticism.

I have a final question, just for the ether, and just because this conventional treatment supporter is BLOODY SICK of the victimization of those who choose their own path:

It so saddens my when a sister has as much to fear from her fellow bc-ers' attitude as she has from the cancer itself.

I'll repeat that:

It so saddens my when a sister has as much to fear from her fellow bc-ers' attitude as she has from the cancer itself.

If untrue statements of fact are made, we can correct those. I'm, not talking about the Big Pharma/Boig Herba fights - those were relatively absent in this thread. This is NOT what this was about. This was not really one of those threads. It was deeper, and intellectually more complex, as well as humanly so. A young woman's life was and is hanging in the balance.

Permission to express my true feelings here:

Thank you for listening to my rant. :-)

Maybe this is a chance to look at ourselves as much as anything else....ETA: and you've all just had a good look at my throat. :-)

Mardibra

slash, burn, poison.....chemo kills....ya Athena, your just a victim.  Please.  If your unhappy with the direction of the thread (many of us are) then dont just accuse others.  Hold up a mirror.  I have.

Anonymous

The current conventional treatments for breast cancer are extremely brutal, so referring to them as slash, burn and poison are accurate, even if the terms make someone promoting them uncomfortable. 

Everyone who has surgery has scars.  Some more disfiguring than others, but common to all.

Virtually everyone who has radiation has burns as a result of treatment.  The severity varies, but the burns are not some rare side effect, they are expected.

The drugs currently used in chemotherapy are poisonous in the doses given to cancer patients.  Those administering the drugs take significant precautions to avoid contact with the drugs because they are so very damaging.

People do die from chemo, although usually from the side effects of the treatment and only very very rarely during the infusion.  Those deaths would include women who develop infections or cardiac damage from chemo that they die from as well as those who develop a secondary cancer as a direct result of their treatment.

It would be great if conventional treatments were safe and effective with benefits that far outweigh the risks for every patient, but they are not.  Trying to pretend that they are wonderful won't make them so.

If an alternative treatment were ever proposed that significantly damaged every patient given it, killed a few, and may actually help fewer than 5% of the patients given it, those proposing it and inflicting it on patients would be prosecuted, and yet, we have chemo.

Chickadee

So now we have, in a way, resurrected the thread in a different forum so everyone can keep beating a dead horse.



How about everyone go back to the business at hand, discussing treatments and what works or doesn't work in whichever forum is appropriate and keep on keeping on.

pupmom

I want to say that I do have a scar from my lumpectomy, but don't feel it is a great big deal. My skin on the radiated side is EXACTLY like it was before radiation. There are NO burns and no wrinkling. The breast has NOT shrunk.  I haven't had chemo so can't speak to that. I am on Aromasin and only have the side effect of numbing hands at night. However, this has greatly improved since I started taking Glucosamine, which is good for me in other ways. It's the pits to get bc and have to give up time to deal with it, plus go through all the crazy emotions associated with this dx, but the treatments are definitely doable. I can't say I feel 100% safe at this stage in my bc journey, but I feel pretty good about my odds. Best wishes to all fellow travelers!

1Athena1

slash, burn, poison.....chemo kills....ya Athena, your just a victim. Please.

Huh? I don't even understand what this is in response to. It's good to read carefully sometimes because my opinion of that term is nowhere present, so I don't know what you are getting at. I'm not a victim of anything, BTW... Never mind.

The real issue is how we treat people like WOM - incredible how that isn't mentioned where I can read. Incredible. It belongs on the comments forum frankly because the mods closed that other thread and because the fear with which someone in her shoes has to post begs the question, IMO....

Let's take time to see how we treat someone like WOM - that's the salient thing, I hope.

Hands up if anyone here thinks she will really simply re-post her question. I am "on all fours."

dunesleeper

I think people ought to be scared of "slash, poison, burn." Not terrified, but enough to think twice. I can only speak for myself, but when I was diagnosed, it was like the medical system took control. I was all set for the standard treatments. I didn't know any other options -- even though I have been exposed to alternative/complementary medicine through my acupuncture training. So, even though I felt that mainstream treatment was wrong, I started to go for it. While recuperating from my mastectomy, I got books. And that is ALL it took. Just knowing that there were options out there. I knew I most likely would not accept further standard treatment. I went for the tests for my own information. I hooked up with a naturopathic doctor. I learned a LOT about nutrition and I made drastic dietary changes (which I should have made years ago). And for now I am NED. I intend to continue eating properly  . . .

and I would like to emphasize that eating properly means not eating cake and cookies and brownies and all these other things I am hearing bc ladies eat. Nor does it mean drinking alcohol on a regular basis. . . .

So I cannot apologize for frightening people with "slash, poison, burn." Everyone ought to know exactly what they are getting into. Maybe they will pick up some books and find a less toxic path to wellness.

1Athena1

How did this all become about three words

*headdesk*

Let's try harder, folks, think deeper. This is about WOM, treatment choice, cancer prevalence treatment and following a very ill woman on her journey.

*headdesk*

Outfield

Athena, great posts.  It's very interesting to me that many responders are not addressing the crux of what you have presented, which is not the terms "cut, slash and burn," but is how WOM was treated.

Mardibra

athena - 

On the previous thread, it was suggested that it is inflamatory to use terms like "slash, poison and burn" and "chemo kills".  Those (and other comments) is what causes folks to get all heated and causes the thread to move off point.  Your response was to defend it by posting the following:

 The terms "slash, poison and burn" were coined by none other than Dr. Susan Love, MD one of the most respected authorities on BC. Far from inflammatory, they are well known and not new.  

The original issue was not about the qualifications of who first said it.  Rather, it was about the passive aggressive nature of such comments and the ability for those comments to blur the original intent of the thread.  

"I have a final question, just for the ether, and just because this conventional treatment supporter is BLOODY SICK of the victimization of those who choose their own path: "

You did in fact claim to be a victim in the above sentence, right? 

We have all gone off path.  We all have to recognize the role we each play in making these threads so hostile.   You cant play the victim while also being the aggressor.  That is my point. 

1Athena1

You did in fact claim to be a victim in the above sentence, right?

No. I was referring to WOM being the victim - others like her too, but mostly WOM since we were following her story. I was never victimized. My personal situation was irrelevant there, It was about WOM. I mention that I did conventional precisely to drive the point home that I was not the victimized one. I was standing up for the OP.

1Athena1

Outfield, thank you. And thank you others. There are important issues that we as a community need to address - not the soundbites but the meat (no lioness pun intended!).

Mods - Not my business so I understand if you don't respond, but did you let WOM know you had locked her thread? She doesn't post that often and might not be able to find her way around as well. She may be relying on her thread for what support she got while traveling for treatment.

Chickadee

Personally I think WOM is apparently in good hands and from the hints she has dropped, I can't help but feel that she is part of some potential TV, book launch for the treatment and clinic she is being treated by. Hence the need to control how much info can be shared Maybe a Dr Oz segment. Who knows, only time will tell.

Mardibra

Ok then, WOM cant play the victim while also being the aggressor.  Same point.