Survivors who have used only alternative treatments
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Athena, just accept the fact that breast cancers deaths have declined, significantly. Progress is insufficient, I wouldn't call it abysmal. And this idea that women are somehow growing less dangerous cancers (its not the treatments, its the cancers waving the white flag) just can't possibly be true. The average age at diagnosis has been steadily declining, meaning younger and younger women are getting bc, when it is at its most aggressive. There is certainly no indication that breast cancer has decided to become a less dangerouos disease.
Breast cancer deaths are declining because of early detection and because the treatments have become substantially more effective. I realize this doesn't square with your fixed ideas, but its the truth.
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Also add to the 24% drop, 2.2% more every year since 2003.
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Athena,
The info...
In 89' breast cancer killed 33 out of 100,000 women; in '03, that was down to 25.
...is in this study published in the Journal of Clinical Oncology in 2007:
http://jco.ascopubs.org/content/25/13/1683.full
And it's not a teeny tiny percentage, it's 8 lives saved out of every 100,000 women. Let's do more math. In 2003, there were about 288 million people in the U.S. About half were women, or 144 million. That is 1,440 groups of 100,000 women. From each of those groups, 8 women's lives are saved. So, 8 times 1,440 = 11,520 lives saved.....(per year!)
If the '89 breast cancer rate persisted, we would have more than 50,000 breast cancer deaths each year. Instead, we currently have about 39,000.
11,000 women who "beat" breast cancer rather than die from it....every year.
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You can also look at this chart, from the National Cancer Institute, which confirms the numbers mentioned above:
Mortality was around 33 per 100,000 women in 89, now approaching 20 per 100,000 women
http://www.cancer.gov/aboutnci/servingpeople/snapshots/breast.pdf
* this chart breaks women out by race and doesn't include a line for all women (why make it easy?) For the mortality chart, I'd suggest the line for white women pretty closely represents the overall rate for the U.S. since the higher mortality rate for African-American women would be somewhat counterbalanced by the lower mortality rates for other racial/ethnic groups.
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so just out of curiosity WOM..
did you find any triple positive, stage III gals who have 'done well' choosing non 'medical' treatment.. alternative treatments?
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Member, I don't have fixed ideas. I wish to God you were right, though - especially about early detection. Beebe, again, death prevalence rates cannot be used as evidence of cancer treatment success because too many external factors may skew those results (one factor close to cancer that could skew this is the discovery that HRT could cause BC - that may have been a milestone that saved lots of women from getting BC. But it does not tell us about treatment itself, because these women never fell ill). A better measure is to answer the question: what happens if you get cancer - do you die - today versus at X time.
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Thank you to all who have provided links to statistics which could have taken me a long time to find. I haven't looked at them all yet and I'm wondering about the effect on the statistics of tamoxifen and AI used for the elderly.
As women live a lot longer now after a diagnosis, therefore a lot of older women would now die from other causes rather than the cancer that would have killed more before tamoxifen (and later AI's) came along. This must affect the statistics and I'm wondering if anyone has the data for different age groups at diagnosis.
Edited to add AI's.
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I wouldn't be surprised if Tamoxifen was the one thing that skewed things a little bit in favor of lots of people. Sheila - since Tamoxifen is given to premenopausal women I don't think there is data on the elderly. If it is given to post-menopausal women I don't know about it. But the elderly would get aromatase inhibitors.
Oh - if youi are asking how people may do 10-15 years down the line, there are some studies but each with methodological oddities. There is a larger dataset compiled by a program known as adjuvantonline (www.adjuvantonline.com).
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Athena,
Just wanted to tell you. I met with an RO tonight at a seminar. He sat and talked with me for an hour.
He said radiation does not affect survival rates significantly, but local recurrence rates were statistically significant. Sound familiar? lol
He also said odds (statistics) mean nothing to a single person..that we're in a yes/no situation. Yes we'll take the treatment, or no we won't. I'm not expressing this right, but basically it was the same conversation echoed here.
I was a little surprised at his candid responses. But I appreciated it.
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Yes, TonLee, thanks. Too few people understand that. I am not feeling well so I don't have the energy to hunt for more links, but one should never just trust a number because it is printed. Find out how it was gotten and what it really means 0 and who is giving it.
I've got an interesting one for you. It is said that babies are delivered by storks. In the 1880s, an Austrian statistitian conducted a study which proved that. He noticed that the rise in births recorded in Vienna one summer coincided with a rise in the number of storks.
For more on how statistics are misused, I am taking Orange1's recommendation and suggesting that people read the very funny Andrew Vickers, a statistitian at Memorial Sloan-Kettering.
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Athena, I edited my post to include AI's before I saw your post. Before AI's all women got tamoxifen. I'm on tam although I'm 60 as I have osteoporosis. All the hormonals add to the time to remission and death in a lot of women. I don't see how all factors can be taken into account and that's why I never trusted the Adjuvant! statistics. I think doctors and pharmaceuticals have a stake in believing all the promising data, but when looked at in a truly unbiased way, the statistics are probably very biased in favour of treatments.
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Here is an interesting article about stiatistcs from a somewhat different angle - about howe things can change depending on how they are presented:
http://opinionator.blogs.nytimes.com/2010/10/24/stories-vs-statistics/
EXCERPT:
Consider the two boys problem in probability. Given that a family has two children and that at least one of them is a boy, what is the probability that both children are boys? The most common solution notes that there are four equally likely possibilities - BB, BG, GB, GG, the order of the letters indicating birth order. Since we're told that the family has at least one boy, the GG possibility is eliminated and only one of the remaining three equally likely possibilities is a family with two boys. Thus the probability of two boys in the family is 1/3. But how do we come to think that, learn that, believe that the family has at least one boy? What if instead of being told that the family has at least one boy, we meet the parents who introduce us to their son? Then there are only two equally like possibilities - the other child is a girl or the other child is a boy, and so the probability of two boys is 1/2.
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What is your point, Athena? That breast cancer deaths haven't gone down significantly? First, it was old data, then it was theories (breast cancer has just become less bad on its own), and now statistics can always be manipulated. No one is manipulating these statistics. They are drawn from national data. Death from breast cancer has declined significantly. We have treatments now that are saving lives, lives that would have been lost 20 years ago. you can make all the arguments you want about long term side effects and the like -- fine, but thats a different argument. The fact is that for an increasing number of women with breast cancer, these treatments work. And if women decide to forego treatment they shouldn't do it because of some myth that mainstream treatments don't work. They don't work for everyone, but for most women they do.
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Sheila, I agree. There was an interesting case in the 70s or 85 in which a Canadian journal published a survey of oncologists and scientists, 75 percent of whom said they would never administer a chemotherapeutic agent (it was a specific one - cisplatin) to themselves. An American oncology journal them set out to prove that data "wrong" but surveying different oncology health care provers at a conference several years later and coming out with 65 percent being in favor of using the chemo agent on themselves. Interestingly, it didn't seem to faze them that the number still fell well short of 100 percent. So who is right? Does the agent kill or cure? These numbers don't really tell us anything. They only speak about intentions and about one agent. But the American journal immediately jumped to the assumption that the Canadians were not thinking correctly. Evidently, though, this shows that some of these things are truly a matter of opinion. I've never seen data on Cisplatin. It probably doesn't exist in pure form either.
Member -who said anything about long term side effects (I hadn't even gotten there)?
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This conversation keeps going in circles.
* Jane says X
* Other posters prove that Jane is wrong and X is false by showing numerous studies, fact sheets, charts, articles, etc.
* Jane then claims that all statistics are unreliable.
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You can't believe everything you read- no matter which side of the fence you sit on or even if you are on top of the fence. When you drill down to many of the published reports it is amazing to see who is excluded, included, etc. TonLee- it is a rare doc who is so candid- I remember being at a dinner several years back and sitting next to a neurosurgeon (top in his field- Houston Medical Center) as we talked he admitted- I could never be a neurologist and have to figure out why or what will be, etc - it is so much guessing and hoping...As it is, I just go in and remove and hope for the best-I am a glorified mechanic.I about fainted. And then I hugged him. Same with a top onc years ago when my dad was in the end stages of colon cancer- I brought his records to the head guy at MD Andersen...he told me he could most likely keep him alive for another 2 years or so but NOT TO DO IT...since he had for his father and it was the most horrible thing he had ever done. It was so crazy to be having that conversation with him on such a personal level. The two men had very similar stats. Thank god I heard what he was saying and that he was so honest. Anyway, I am not sure this even fits in here but it taught me something. People may advise certain things in public and an entirely different thing on a personal level. Even the top docs. Is all conventional medicine bad? Hell no. That would be foolish to even utter. Is it all good? That just as foolish. As was said, apples and oranges -we are all so different- I said in another thread that even something as innocuous as shrimp can be widely dividing. I can gorge on it for hours and land up with a big burp while just one could kill my husband in a very short time. And another thing..people need to remember that natural does not equate safe in any way. Very potent medicines and sadly some unscrupulous people do concoct potions that actually include active ingredients of traditional medicines without labelling it as such...A few years back thousands were flocking to natural energy pills...basically speed...but they used different names-ephedra- mu huang, etc...speed of a different nature but spped nevertheless taken by people who would faint at the idea of taking an illicit drug...I could go on and on...but I think you get my point...we just have to make the best decision for ourselves. And when someone has made it and it proves to be wrong not rush in and tell them I told you so. For maybe it was not wrong for them. Who really knows in the end? I do know the nastiness is not healthy for anyone nor the veiled insults hurled at different ideas. It is already stressful. I want everyone to beat BC...hell, I am an old woman by many standards being 54 and I have news for everyone...I plan on dancing when I am 84. And the news of a cure for BC has been premature- it has set up a mindset in many who are not affected in thinking that those of us with a lower stage are somehow faking our pain and confusion and fears. It is all BS. I amthrilled for those who get a BMX and then go climb the Matterhorn the next day...but I refuse to feel like a slacker when I give in to a good dose of crying or my body hurts. I tried to be the poster girl for quick healing and it walloped me in the &ss after the fact. When I hit the reality of it all and realized I had to be on my toes to fight this with all I have-all I decide...that is scary. But it is, in the end, all what we have to do. Educate ourselves and and pick a course of action. We can change our minds or not. BUt some folks need to stop attacking when someone chooses something different. Or demanding someone to accept facts. For the fact is, facts keep changing. Personally, I hope like hell my choices are right. I cannot know the answer yet. But I remain open to learning, which in the end I think will save my life - or should I say extend my life.
Dance like nobody is looking.
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Beebe - I have never said that all statistics are unreliable - never. Again, for the last time, prevalence rates say nothing about cancer treatment success - those statistics are reliable for prevalence - not as barometers of treatment. Ask any expert.
I am done with this topic. The tyranny of conventional wisdom is a tragedy.
Annettek, I loved your post. Dance like nobody is looking - great advice. I am doing many things differently these days.
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Athena,
You say:
"Death prevalence rates cannot be used as evidence of cancer treatment success because too many external factors may skew those results ...A better measure is to answer the question: what happens if you get cancer - do you die - today versus at X time."
You are right, a better measure is seeing what happens to those who are diagnosed with cancer. And this data is the slam-dunk proof that treatments are saving lives, because the absolute number of breast cancer diagnoses has generally been rising over time and yet the absolute number of deaths has been dropping.
It's hard to find this data because everyone prefers looking at rates (per 100,000), but we can spot check easily.
For example, in 2000, there were 182,000 breast cancer diagnoses in the U.S., and about 48,000 deaths from breast cancer. (http://www.aafp.org/afp/20000801/596.html)
In 2010, 209,000 breast cancer diagnoses and 39,000 deaths.
More diagnoses, but fewer deaths....Why? Because the treatments are working for many women.
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"He also said odds (statistics) mean nothing to a single person..that we're in a yes/no situation."
Talk about unreliable statistics. I hear this over, and over (more in the naturopathic-only camp, I'm afraid), from posters and doctors. It drives me bananas. Even WITHOUT treatment factored in, Stage 1 is NOT Stage IV, the statistics are entirely clear: the former can live a life without recurrence, a scant few in the latter can dream of it.
I'd like to hear that doctor tell that to the adoption agency that we are working with--they block Stage IV patients from adoption on the basis of statistics. There is, sad but true, a really good reason they do that.
Regarding whether treatment works, I believe comparing the US to our sisters in third world countries (a dear friend is now grappling with Stage IV as I write this after finding her own massive lump) might show earlier, effective treatments save more lives. I could be wrong, but it's a hunch.
Oh, wondering where all the equipment goes when we upgrade to digital mammography? It gets sold off to countries like where my friend lives.
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I'd also like to add: if conventional wisdom looks like Member and Beeb, I'm in. There are so many posters here who provide rich information, I'm grateful to so many of you. Whether we agree or not, there is a lot of rigor on these boards in many cases,and it has guided my way.
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oh...i swore I would not comment...but here goes...Beebe, respectfully, to my unscientific mind here is what I see when I read stats like that..one has nothing really to do with the other...it is a small majority (thankfully) of BC patients who die the same year they are diagnosed. Too many factors play into both numbers. Now a look at the second number-actual deaths- that is a good drop for whatever reason. But personally I don't believe it has anything to do with the number diagnosed in the same year. I think people are living longer in certain cases and at certain stages (again-not a guarantee from a lower stage and thankfully i have been priviliged to meet a LOT of stage IV warrior sisters who have lived much longer than they were originally led to believe or that odds would give them) as a result from a multitudeof things...including conventional and alternative treatments, alone or combined as well as the one thing nobody should forget- genetics. That is where medicine is going (eventually as it is very expensive) - targeted research and resultant therapy based on a person's genetic profile rather than their affliction. But even at that, you then have to factor in environmental influences. As I mentioned, my dad passed from colon cancer...it was a friggin sin since he was the original health nut and at 76 he had the body of a man at 50- but the fact that he was a steamfitter in some of the nastiest most toxic plants around the country gave him and 75% of the men in his crew colon cancer. They ranged in ages from 35 to Dad..he was the oldest and I imagine his body repelled it for so long because of his health but in the end, the environmental toxicity ruled. It is just the way it is.
Diagnosis rates rising are a good thing. In some ways. On one hand it means more can be caught early and possibly successfuly treated. MOre awareness leads to more seeking tests. I worry in some cases that some are being overtreated. And that snags funding dollars away from research for more advanced stages. It helps a cure rate when you are curing something that was cureable. Which again, is a veyr good thing for god's sake. But, it can be misleading.,I not only want myself and other early stagers to survive, I want the rest as well to be up there in the stats. I do not know if they break it down, I have never seen it done that way, They are always sums and averages and mean figures, blah blah blah. to the point that everyone (general public) thinks eurka no big deal its cured. Put on a pink ribbon and sing,. It ticks me off big time. I say they break it all down and give honest sectors of just what has been diagnosed and who is surviving...and the research money goes to the sector that has the worst stats. I feel like an *ss half the time when I am graced in a discussion with someone fighting a monumental battle for their life...(which to be sure I am in my own way but realistically, at this point, on a completely different scale) and they are comforting me. It frustrates me that I cannot help more or in a real way. What good do cheery numbers do for someone who keeps getting bad news? Where is her piece of victory? I can't rest or accept blindly any stats until there are more victors. Many started out at Stage 1 or 2-that is a fact. And they did everything right. Everything. For them I won't shut up. For any of us. We will stand on our heads and drink the milk of a tetse fly while singing Old MacDonald had a Farm if it will help us make it through to the elusive other side of health. But I can't slap lipstick on a pig and call it beautiful. Hope is essential but fairy tales (the real ones) all had a cautionary tone.
Oh geez...it looks like i am in one of my moods....I could have just said...question everything...it is your right, or if you choose not to, that is your right too.Find a bully if you are too shy and have them ask questions for you. It is too easy to slip into a passive mode and give it over to the "Doctor". I am not saying go in there swinging but it is the one times in our lives not to nod our heads and say ok. Even if your answer turns out to be ok, we owe it to ourselves to know what they know...and think...so we can think in turn.
Night all....sleep tight and sorry for the ramblings.
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It seems like most of you who are arguing against conventional treatments are not HER2+ve. It's a total other ball game!!! Stage III HER2 is not to be messed with. Sure, it's not nice having chemo but it's sure better than being dead.
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Hi Annette,
Of course...the breast cancer deaths in a given year are almost certainly not from the diagnoses that year. It's the trend that is important. And the trend has been -- more breast cancer diagnoses each year... and fewer breast cancer deaths each year.
The discussion here stemmed from wornoutmom's original post which suggested she would skip chemo, anti-hormonals, herceptin in favor of "natural" alternatives. So we've been offering up all kinds of information related to those topics.
Some of the information posted here has simply been false, so there's been a lot of energy and "ink" expended to try to get at the truth, as best we can.
Absolutely, we all want this disease (cancer of any kind, and all other diseases) to stop killing people. No one will argue with that.
But the magic bullet hasn't been discovered yet, so we deal with what we've got instead, and try to survive.
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suepen~
I love how you tell it like it is...
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Thanks Ange - it just breaks my heart to see people question having herceptin when I know it has saved so many lives. I did mention 2 women on these boards who are Stage IV and now NED - what a miracle!!! We did ask my onc if he would want his wife to have chemo/herceptin in my situation and he said "definitely" and I was only Stage 1. BTW we have known this onc for more than 8 years as he treated my DH for bowel cancer and then a recurrence in the lung - all clear now!!
Sue
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Here's what I came up with for projected statistics for the US for 2010 from The American Cancer Society
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Page 9
An estimated 207,090 new cases of invasive BC are expected to occur among women in the US during 2010; about 1,970 new cases are expected in men.
Deaths
An estimated 40,230 BC deaths (39840 women, 390 men) are expected in 2010.
Page 11 - Survival at 5 years
The 5-year relative survival for female breast cancer patients has improved from 63% in the early 1960's to 90% today. (10years = 82% 15 years = 75%)
Local (Stages I and II) 98 %
Regional (Stage III) 84%
Distant (Mets to distant lymph nodes or organs) 23 %Age at diagnosis from 2004 to 2006 for women
Birth to 19, 0.49% (1 in 206) - 40 to 59, 3.75% (1 in 27) - 60 to 69, 3.40% (1 in 29) - 70 and older, ~13,806 at 6.50% (1 in 15) - Lifetime, 12.08% (1 in 8)
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I had to type that as it couldn't be copied and I changed the format a little so it was easier to read. I'm not 100% sure what they included in local, regional and distant as the explanation could be interpreted differently, so don't quote me.
What happened with the introduction of anti-hormonals is they delayed stage IV diagnoses and then prolonged life in stage IV. So many progressions and deaths moved from 5 years to 10 or more, and many of the 13,000 diagnosed over age 70, plus some in the younger age group, would have died of other causes instead of BC which in the 60's may have taken their life much sooner. This improves the statistics so that improvements from other therapies such as chemotherapy can't be assessed.
Unfortunately comparing developed countries' statistics with undeveloped would not work as they generally have a shorter lifespan. Also many in undeveloped countries never even get issued with a birth certificate, have access to doctors or have a death certificate. As far as I know, data from such countries is estimated from the more developed cities where the privileged have access to doctors, medical facilities and treatments that the masses don't get.
(Edited to correct 'that' to 'what' which changed the meaning.)
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WOW, been following this mind numbing discussion from the beginning. And must be in a very weird place tonight because I just want to SCREAM! I don't give a damn about stats, figures, numbers, etc. The only thing that matters right now, this minute is that I am here, alive and kicking, to love my husband another day. To sew another project, to watch another sunrise, on ad infinum.
I went through hell, and kept on going. And I'm here. Will I do it again? Probably. Yes, I did the chemo sets, surgeries, rads, more chemo, more surgery, and still have more to go.
Shoot, the stats, the doctors, those who were "all knowed up" - told me there was no way - that their figures gave me about 18 months - and that was 2 and a half years ago. I'm NED, and have been
NED for over a year now.
But this is a PERSONAL CHOICE, and even with all the stats that can be expounded upon - the only stat that matters to me is my life. If there is a 1% chance, I want to be that 1%.
Sorry if I'm not making sence here - my head is spinning with all your numbers and differences of opinions.0 -
scuttlers - you are a prime example (like the other 2 women I know on here I mentioned before) of how chemo/herceptin etc can save you. I love your signature - you're ALIVE!!!0
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Just found this article that warns about "alternative" treatments - worth the read.
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hi suepen,
we certainly need to be wary of quacks as well as doctors (conventional) who would overdiagnose or overtreat someone to death..
thake for example, Shin, a Korean woman who really believed in conventional medicine,,, we all knew that she died not because of cancer but ebcause of an infection in her lungs..
http://shinscancerblog.blogspot.com
she has been immortalized through the media here in Singapore, but the overmedication was played down so much..
but the honesty in her blog-- even if she 100% believed that conventional medicine have all the good intentions... conventional medicine itself killed her.. read her entry dated January 2009..
she have to die a very painful death that her morphine has to be increased..
we have to be wary of both quacks and insensitive conventional doctors..
specially if you fall in the category of Her2+ agressive BC.. everyone is naturally inclined to fight agrression with agression,,
mind you Singapore is a developed country.. so you cannot tell me that the hospitals that treat her are not equipped with the most current technology and medical knowledge..
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