Survivors who have used only alternative treatments
Comments
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Athena: Yup, for a disease that's been around since the dawn of man.....we're still in the dark. I think it was called "consumption" back in the day. Your opinion makes sense to me.
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Ha, ha!!! So that's what it was, eh? Maybe you are right. It's a better word than cancer, IMO.
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I was wrong. I just looked it up....it was tuberculosis, not cancer.
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The idea of being "cunsumed" is very apt, though.
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Athena, Athena, Athena. More people die from a cold than stage IIb cancer? You know better. My prognosis, even with everything I threw at it, was 80% chance of long term survival (at time of diagnosis). I would have much preferred a cold. But I do agree with you about all that pink nonsense and cutesy slogans about boobs. I particularly hate the cutesy slogans about boobs.
I think before we speculate about AIDS someone should post how much is spent on AIDS and on breast cancer research. My guess is that actually more is spent on breast cancer research, though i could be wrong about that. In any event, I am not comfortable with the comparison. A huge almost incomprehensible, percentage of people in sub-saharan Africa have died of AIDS and still die of AIDs. And I have lost more people I love to AIDS than to breast cancer. let's not pit one against the other.
And i disagree about breast cancer not getting the fundraising pitches. I see FAR more fundraising for breast cancer than any other disease. I'm not going to disagree with the idea that the organizations have become rich and pompous, but geez, they are still out there beating the bushes. This is why I have switched all my fundraising efforts from breast cancer to brain cancer, which killed my mother.
When Magic Johnson announced that he had HIV, his prognosis of years of survival was in the single digits. I remember it well. This was before the introduction of protease inhibitors, which have extended the lives of people like Johnson and many others.
Finally, i can get frustrated with Big Pharma and the profit motive too but I truly don't buy that they find the lack of a cure more lucrative. The company that develops the cure will reap enormous, enormous, financial benefit. A more realistic concern is that they will develop such a cure and make it prohibitively expensive. Nor do I believe for one second that my oncologist and surgeon are keeping some kind of cure from me so they can make money, or are part of some such effort. Not for a second. if you believe that about any of your doctors, you need to find other doctors. Thats just silly.
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"Consumption" was a name for tuberculosis. Hippocrates wrote about it as the "great killer" of the 5th century BC.
With the conquest of a lot of infectious diseases, and better nutrition, and huge decrease in maternal deaths in childbirth -- a lot more of us are living long enough to get cancer!
EDIT: oops, I can't keep up! Sorry for the cross-post!
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But, member, that is WHY they are still dying of AIDS in sub-saharan Africa. Not because the treatment isn't available, but because they need our donations to give it to them. My point is that those with AIDS made enough of an impact to INSIST on a viable treatment; anything less was unacceptable. What's wrong with expecting the same for cancer? Especially after all these years and billions of dollars.
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I can't believe the trouble I am having getting my point across so let me re-state: NO ONE dies because there is cancer in (to use my example): a 3.4cm area of the right breast and three lymph nodes, a.k.a. Stage IIB.
You die because there is cancer in your vital organs. At that time, you are no longer Stage IIB. You are Stage IV. People who die as a result of breast cancer are all stage IV. Never stage 0, 1 or 2.
What is so hard to understand about that?
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This conversation made me curious about government funding for cancer, so I looked it up. Interestingly, even though breast cancer is only the third most common cancer, it gets twice as much government funding as any other cancer type -- about 600 million per year. By contrast, lung cancer, which is the most common type gets about 247 million dollars per year.
http://www.cancer.gov/cancertopics/factsheet/NCI/research-funding
I don't think we should compare AIDS to cancer either, because AIDS is transmissible. Unchecked, AIDS could sweep through the population and pretty much kill everyone (or at least, everyone who has sex, which is 90+ percent of the population.) I'm pretty sure that is a big part of why AIDS got so much attention/concern/funding.
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The main obstacle to achieving a cure for breast cancer is that it is not one disease; the distinctions between ER+/ER-/HER2+/TN etc etc are only a part of the picture.Each individual tumor is made up of several different oncogenes, and until these are all identified and mapped, sucessful treatments will remain haphazard.Some will effect a cure, others will not.
We can but hope that this line of research will yield results in the very near future.
Athena - I do understand what you are saying.....but actually as I pointed out before, a tumor which remains in the breast CAN fungate and the resulting septicaemia CAN kill you.
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C'mon, Athena, it's misleading at best.
It's not a stage of cancer that kills you, it's the cancer itself. Stage only indicates how far along the cancer is when you catch it.
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I think cancer has reached epidemic proportions as well. I admit comparing AIDS and cancer is uncomfortable and probably wrong, but it's the only disease I can think of that was continuously being brought before congress, had rallies of thousands, had people screaming in the street. Maybe that's what it's going to take for someone to finally hurry up and find a cure. It's harder to ignore when people make DEMANDS, instead of sitting idly by and hoping. I remember one lady posting that it's high time everyone stopped "running for the cure" and sat down and find it already. I always liked that analogy, and unfortunatley, if it takes me kicking and screaming to do it, that's what I'm going to do. I simply can't bear the thought of my kids getting cancer....and though it may be morose, I think it's a matter of when, not if.
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Beeb75: While lung cancer is the most common kind of cancer, it is probably also the most preventable, also. I think that 90 percent of people who get it are smokers. I say spend more money on the cancers that are not preventable, and perhaps work harder to keep people from smoking.
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Wornoutmom, you must just be sitting back in horror, wondering WTH your thread has turned into. I'm so sorry, but I just can't seem to keep my big mouth shut when it comes to voicing my dismay at conventional treatments and still having no cure, or at the very least, better treatments to give someone with mets a longer life. I apologize.
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Beebe - sure. Of course. I know how disease progresses. I don't want to get stuck on a small point.
The road by which I come to insist so (admittedly) harshly that anyone survives Stage IIB cancer is because I want to make the point that the cancer establishment, by using terms such as "survivor," is artificially creating "heroes" in a battle that has not been won. It's easy to be a "hero" when the bar is set deliberately low.
And why would that matter? That is a reasonable question. In fact, it doesn't really matter in itself. If an individual person wants to call herself a "pink survivor warrior who fights like a girl" and wield her pom poms and ribbons, it's her civil right I suppose. You are entitled to your version of events.
What should not be acceptable is when this phenotype (yes, I will call it that) is sold by powerful groups as an accurate representation of the power that humans have over this disease. It matters because it amounts to a false declaration of victory. And when victory is declared, the public and even patients become deluded into thinking that the status quo of cancer is at an acceptable stage. Complacency sets in. Research is slower or less effective. Small discoveries and improvements are celebrated as miracle cures. The truth itself, in other words, falls gravely ill with Stage IV cancer brought on by a mutation of information by at times well-meaning but misguided groups. What follows are: ridiculous salaries for the non-profit CEOs, hugely wealthy charities like the American Cancer Society hoarding their cash, expensive studies with a high risk of failure but that could also come up with a cure being ditched in favor of cheaper studies, and very little progress anywhere except the land of delusions.
If one individual wants to say that she is King Tut and no less because she got cancer, that is her business. When an entire establishment sells that tripe and succeeds, then the millions of people dropping dead from breast and other cancers will continue to die in vain.
"Editor's note:" To be fair, spectacular progress has been seen with selected cancers, especially childhood leukemia. Chemo does actually cure a small number of cancers, and other treatments can cure other ones. So the above "condemnation" refers mostly to breast and, implicitly, other large organ cancers in adults.
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well, Gracie, I apologize for my hotheaded response. I think you are on to something, though, and I think it was Athena who posted something about this dilemma a while back:
we have been pinkwashed into submission. we are supposed to be perky, sassy, perfectly pedicured/manicured, fabulous fun! wigs, etc etc. i think one reason why AIDS/HIV community won what they did is their fierce commitment. they took to the streets, the halls of Congress, their legislators - whatever it took. they were mad as hell and determined to kick in the teeth of anyone who patronized/condescended/ attempted to sell the snake oil of "if life gives you lemons, make lemonade!"
we need our own version of ACT-UP. now.no more campaigns with pretty scarves, yogurt tops, bedazzling pink ribbon pins.
j
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So true....I cringe every time I see another 'pink' offering...and the people who feel so virtuous for buying it.
And the general perception at large that perpetuates the myth that once you reach the magical 5 years you are cured. And the strange looks you get when you try to correct that falsehood, knowing that they probably think you are being paranoid and 'negative'.
And being told that none of us knows what the future holds.....why, a bus might be on the horizon.......
Sorry, I digress.....but maybe we really do all need to get angry and kick up a storm to get the appropriate attention that breast cancer research requires.
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Brilliant post, Athena.
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Beeb75 I was actually told by my onc in my case I would have a 58% chance of dying of cancer in the next 10 years if I didn't do any further treatment after surgery. I'm stage IIB
Lynn18 AIDS in not always preventable. Many got it from blood transfusions. Although rare now it still can happen. Condoms/safe sex is not perfect. I think I even read you can get it from organ transplants. Remember that HIV doesn't always show up right away. It can take years.
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Good point, elmcity69. Maybe we can learn from AIDS activists and do the same.
The yogurt lid thing is ridiculous. You spend 50 cents to mail in 10 yogurt lids. You spend your time to clean them off and put them in an envelope. Energy is used to mail them across the country. Then someone is paid to what, count them? Then a dollar is given to who? The Komen fund? How did we get to this?
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sam52: "why, a bus might be on the horizon"...got me laughing.
But, you're all right. We need a cure. And I feel science is probably getting close, now that we have the ability to observe genes within cancer cells and understand how they operate. The emergence of "targeted" therapies like Herceptin, Gleevec....all bode well. I think we'll have a cure for cancer this century, though probably too late (in more ways than one) for all of us. I don't know how to speed up the process.
One thing that I think has been an obstacle, is how the best minds of the younger generation of working adults (i.e. my generation) turned away from science and medicine to make their fortune in finance. I've seen this up close and personally. I think that tide is turning now, but I believe a chance for progress over the past 15 years was lost. But that's probably a topic for another thread.
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Athena, I totally agree with you about eh whole pink warrior thing, but your posts about how only metastatic bc kills were insulting. I get it, I knew it, but I didn't understand what you were saying initially.
Lets be careful about lung cancer. I will not blame the patients. There are actually quite a few people who don't smoke who get it (remember Dana Reeves?). In fact, there is a form that seems to strike middle aged women and they think it may be estrogen driven.
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Member: I think your response is directed to Lynn, as she is the one who wrote this:
".....While lung cancer is the most common kind of cancer, it is probably also the most preventable, also. I think that 90 percent of people who get it are smokers. I say spend more money on the cancers that are not preventable, and perhaps work harder to keep people from smoking....."
And Member, I totally agree with your response. lt is important not to end up implicitly blaming people for their illness! (even if that's not really the goal in putting it this way). No one ever asked to get such a terrible illness to deal with for the rest of their life.....
Athena: you are a very powerful writer. When you write this: "..... What follows are: ridiculous salaries for the non-profit CEOs, hugely wealthy charities like the American Cancer Society hoarding their cash, expensive studies with a high risk of failure...." There is nothing else to add; you have hit the nail on the head and demonstrated why cancer research seems unable to move ahead at this time.....
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Member: I agree with you, Dana Reeves was a non-smoker that developed lung cancer. I heard that second-hand smoke may have contributed to her lung cancer. I don't want to blame anyone for getting sick. However, if a person smokes their entire life and ends up developing lung cancer, do you think they bear any responsibility for that? Is there no cause and effect?
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Athena, I get it. I know what you're saying. But I disagree with how you're saying it.
A diagnosis of Stage IIb is a snapshot in time along the BC continuum. At one point is was a Stage I. If it wasn't removed from the breast at IIb, then in a matter of time it will be III or a IV. At Stage IIb it's in the nodes--a local spread. If it can go there, it can go anywhere. So it all being about the mass in the breast is moot and misleading,. to me.
No, that lump alone will not kill you. It's what happens to the cells that have already gone rogue and run off the nodes or the blood stream.
AIDS, fortunately, is the result of ONE virus, so targeted therapies were more easily developed. If we had a clue about any or ALL the causes of breast cancer, we'd be getting closer. That said, I'd rather have the devil I know that the devil I don't know. Yet that's easy for a Stage 1 girl to say.
And, FWIW, I despise the pink ribbon campaign and cutesy sayings!
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Lynn,
Am I responsible for getting breast cancer because I haven't had children (yet)? Supposedly, there is a cause and effect.
Edited to add: I don't mean that to sound snarky, I'm really curious. If various factors correlate to developing cancer (for breast cancer, reproductive factors, use of birth control, or other hormones, etc.) are those of us with cancer responsible for our disease because we chose those factors?
I think it's interesting that we're more willing to "assign blame" to smokers for "causing" their cancer.
It's not just for lung cancer. I very much detect the sentiment even for myself, and I think it's because people want to feel that they are "protected" from cancer. If they can think of a reason you are responsible for your cancer (too many cookies!) they can make sure they don't make the same mistake.
I think the media, and perhaps science itself, is responsible for this because of the constant messages about eat this, drink that, avoid this, load up on that -- and you'll prevent "X" cancer.
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Beeb75: Not having kids may be a risk factor for developing breast cancer. Having many kids may be a risk factor for developing triple negative breast cancer. I don't see a cause and effect there.
Tobacco use is the most preventable cause of death. Period.
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Lynn, you are probably right about that.
Still, I think we (society) should also search for a cure for lung cancer. Its victims don't deserve the suffering and death either. And about 15,000 never-smokers die of the disease each year.
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I really don't know much about the causes of. BC and certainly never paint myself as an expert. And this is probably off topic, but every time I see the thread "Natural Girls," my immediate reaction seems to be to ask myself, does that mean I'm an "Unnatural Girl" because I'm somehow not being pure enough? Can only really pure girls (and that's another thing...we're pretty much all past the age of 18, right? So aren't we women?) be noble enough to be on the alternative forums? Do only natural girls have the tenacity, commitment, and dedication to live pure enough to treat, or prevent, their own BC?
I don't know...I think every time I see all these conjectures of what causes BC, all these supposed ways to prevent or treat it, it just seems to show how confusing everything is.0 -
AnneW not all stage IIB is in the nodes. I'm a nodeless stage IIB but I do have a big tumor.
If you've ever watched someone try to quit smoking unsuccessfully over and over again I think you'd understand that this is an addiction. Many of these folks started young and actually do want to quit. I've watched my husband try over and over again. He watched his mom pass from lung cancer (heavy smoker that passed at age 86). He know's what's in store. She didn't do chemo but he got that experience with me. He's still trying.
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