Survivors who have used only alternative treatments
Comments
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I don't suppose white willow bark would be a clean stand-in for aspirin? Isn't that what aspirin was originally made from --the salicylic acid in the bark? At least you'd know where it was grown and it wouldn't have contaminants. Mountain Rose herbs or some place would carry it.
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Thank you grace1. I appreciate your perspective and I pray for your healing.
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Claire, I still have to try cross-country skiing. Hopefully next year unless we get more snow. Last week I went snowshoeing for the first time. It was so much fun. My husband and I were on the trail for four hours and didn't run into anyone else the whole time.
I exercise everyday as well, with cardio, resistance and flexibility training for an hour. I don't take aspirin, but many fruits and veggies contain salicylates. If you get enough servings, you could reach a small aspirin dose.0 -
Love that Hey Apple video...........
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i do too.. my kids watch those silly videos all the time.. including the bananana one.
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Beeb75, you wrote:
They are the women who have Stage 1 or 2 or 3, who, after surgery, have no evidence of disease by current imaging methods. They get "adjuvant therapy" -- chemo or hormonals, or whatever -- and never have a relapse.
See: that's the point on which you and me have agreed to disagree: most of those Stage 1, 2, and 3 women had cancers that were just simply not going to progress, with or without treatment, be it conventional or alternative.
Chemo, chemoprevention, SERMs, and AIs do not improve overall (or real) survival, no matter how much we all want it to be that way.
Several independent scientists have pointed time and again to the fact that the only reason why chemo, for instance, may reduce your risk to a certain extent, is by causing menopause.
I won't post any additional links to prove my point: we have agreed to disagree
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I don't understand how you can say these cancers won't progress when they already have. If the cancer is in the nodes, it knows how to travel.
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Yazmin,
This is not a disagreement between you and me. This is a disagreement between you and the scientific studies.
You say, with no proof to back it up, that those things don't improve survival. I say "These studies show that these things improve survival." Who should people believe? You? Or the studies? The links to these studies are all right here in this thread, so everyone can read them for themselves. The studies typically report both disease-free survival AND overall survival, both of which were better for groups treated with chemotherapy, radiation, and tamoxifen. Someone else posted great data on Herceptin, which also notably improves disease-free and overall survival.
If you, or anyone else, would like to post studies that show otherwise, and let the science prove your points. I would love to see them. Instead I only see opinion and obfuscation and things like "PM me and I will point you to the studies." Why not post the links right here? Are you afraid they won't stand up to scrutiny?
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Beebe,
Your studies were refuted by other studies including ones on this website. No overall survival.
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Hi mathteacher (God help our children)
Specifically, which ones?
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Scroll back and read the thread.
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Yeah, I must have missed this. There was something about outdated SEER data, but the more recent data does show an increase in survival.
Fixed ideas. Nothing, no date, no studies will alter them.
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The study I linked to (it's not my study, it was done by the Early Breast Cancer Trialists' Collaborative) was a meta-analysis of 78 randomized treatment comparisons, including 42,000 women. It included cancers of all sizes/node involvement, etc.
The study posted on this site, titled (ironically) "Radiation benefits women with small cancers after lumpectomy," by Gnant et. al. says: The "standard of care" recommendation is based on many large studies that compared lumpectomy plus whole breast radiation to lumpectomy alone. These studies showed that radiation therapy after lumpectomy significantly reduced the risk of the breast cancer coming back in the same breast. The studies also found that women with node-negative disease lived equally long lives after lumpectomy alone or lumpectomy plus radiation. Women with node-positive disease had an increase in survival."
Gnant's study only included node-negative women and confirmed what large studies have shown. It didn't include node-positive women, you know, the ones who had an increase in survival after radiation, according to breastcancer.org.
The link, again.
http://www.breastcancer.org/treatment/radiation/new_research/20060217a.jsp
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Beebe,
You deleted the conclusions of the study which contradict your theory.
"There was no difference in overall survival in either trial between women who had radiation treatment and women who did not."
The link, again is:
http://www.breastcancer.org/treatment/radiation/new_research/20060217a.jsp
Believe what you want.
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Ah, lago, you said "I don't feel bad about my post count...I think many others make me an amateur when it comes to word count." Guilty as charged!!! Many apologies for such wordiness.
grace1, what an eloquent posting. You have given me some much-needed encouragement for today. Thank you.
Apple, I loved your earlier post with piano and paintings. My dream is that someday I will be able to play piano again - the chemo gave me peripheral neuropathy so I dictate my email using Dragon (hence it is easy to get carried away with too many words) as I cannot stand to do any tapping with my fingers on ANY keyboard - computer or piano. Had I known this would be the reward I got for playing the statistics/fear of statistics game, I might have chose an alternative path.
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I have no theories, I have only facts.
The trials we are talking about here (by Gnant et.al.), reported on BCO, only included post-menopausal, node-negative women with tumors that were hormone-receptor positive and were under 3 cm. These women ALL got a lumpectomy AND took hormone therapy afterwards. If Gnant found no survival benefit from radiation for these specific women, I'd tend to believe him.
But Gnant's study does not "refute" the meta-analysis I linked to, as you say above. It adds some information to the available literature on radiation, but applies only to a very specific sliver of patients. If you're a breast cancer patient who doesn't fall within that sliver, you better make sure you're not relying on Gnant's conclusion and think the study that applies to you. Mathteacher, that seems to be what you would like everyone to believe.
So what about those who are node-positive? Who have larger tumors? Who are ER negative? Who refuse hormonal therapy? Well, they're not covered in Gnant's study. They ARE covered in the meta-analysis in the Lancet from 2005 that I linked to in an earlier post, which found that a breast cancer death was avoided for every four local recurrences prevented by radiation. That is, there is an overall survival benefit from radiation.As I said before, everyone should read that study themselves to see specifically how radiation would help them (or not.) Or ask your rad onc who will know the numbers like the back of her hand.
I'm not saying that everyone needs radiation, or that radiation helps everyone. Just like I would never say all breast cancer patients should take tamoxifen. There's data out there on who benefits from what and how much. It's worthwhile to find and understand it.
But not all studies are created equal. Gnant's, it seems, was never even published in a peer reviewed journal. The Lancet article is considered a gold standard.
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I have trouble with the grand conspiracy theory about why our oncologists recommend treatments that you claim (against the evidence) don't work. I understand the argument that pharmaceutical companies are motivated solely by profit. I think the truth is more nuanced than that, but OK. But what about our docs? My oncologist heads a cancer center at a university hospital. He cares very much about his patients. And he's not stupid, or unable to read studies or whatever. He doesn't follow fads. I know this because when some oncs were giving their patients the test that would supposedly tell if they could metabolize tamoxifen, based on limited studies, he said that he wasn't convinced it was worthwhile and subsequent studies have support him them.
So why would this lovely, intelligent man recommend chemo and radiation and hormonals that weren't going to do anything? Why do you know better? He reads all the studies, he runs a major cancer center, but you know better? Also he has a medical degree and years of experience.
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All cancer treatment efficacy data - especially survival data - is, by necessity, a few years old, or outdated. Adjuvant!, which oncs routinely cite, has to be "outdated." How else are you supposed to have five- or ten-year outcome data for people who begin treatment in 2010 any sooner that 2015 or 2020?
Remember cancermath? They have 15-year outcome data. How recently do you think cancer cases there began?
Issues like overall survival require even older data. Given that the average life expectancy is somewhere in the late seventies, it would also take ages to know what happened to whom. We need epidemiological studies. They are imperfect, but they are what we have.
SEER data consists of tumor registries. It is the data from which both adjuvantonline and cancermath derive many of their calculations. It is also the data that fuels many US studies.
Herceptin has no long-term outcome data, so any statement that it has a good long-term record is fiction. It MAY end up having it; we won't know for years, though. The same goes with the oncotype test.
The cancer world is finally changing. Mammograms and the myth of early detection are being debunked (except in the world of BCO). To a greater extent than even a few years ago, women with positive nodes but low-grade tumours are now being pardoned from chemo, as doctors come to realize where overtreatment is taking place. People with my node profile may be excused from radiation. I was a borderline case partly because I chose a BMX. We are seeing a lot of paradigm shifts just since I was diagnosed, but the pioneers in the field are the first to complain that doctors are slow to follow the science because patients are scared and demand treatment, thinking that more treatment equals a greater likelihood of success, even in cases where the science says otherwise. The doctors are also afraid to tell patients there is nothing they can do. These are good people dealing with impossible circumstances.
I like my onc, that good man who did everything he could to persuade me to do chemo. He was honest with me and I believe he was acting ethically. He did what he had no choice but to do, and I did what I had no choice but to do. He answered all of my questions, telling me that science had no way to know whether I needed chemo, would benefit specifically from A, or C, or Taxol or Taxotere, etc... He also told me that almost every oncologist in the country would encourage me to do chemo. He told me about ten-year recurrence rates based on (for humanly obvious reasons outdated) adjuvantonline data.
In short, he did the best that he could do for me in this day and age based on what is known about cancer, what is known about human nature, the nature of fear, the moral obligations of the Hippocratic oath, and is one of the most respected oncs in town. He went further and accepted my final decision and worked with me. The treatment that I did take nearly cost me my life. I had to forgo it, and he stayed with me. I like my onc. He has no good options or treatments for ME, but it isn't his fault.
I agree with you on one thing, Member, there is huge money and profiteering from alternative medicine. I am not a conspiracy theorist either and do not think it is merely about big money. Fear is a much stronger force.
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Mathteacher - again...(Also for Athena) - not sure why you say no improvement in survival
Math teacher - you say no improvement in survival from Herceptin. Absolutely not true. Significant improvement in survival was found for all the large herceptin trials. Google BCIRG006. Look for for 3rd (latest) update for trial BCIRG0006 from bcirg.org. Significant improvement in disease free survival and overall survival in all populations of Her2+ patients... Overall group, node negative group and high risk group (4 or more positive nodes.) The other large Herceptin trials showed similar or better results - but I have no easy link to them. If you care to check look for published results of the HERA trial and the "Combined analysis trial" for Herceptin. You may have to pay to see the articles for the last two I sited, but can view the BCIRG 0006 results for free. For node negative - absolute reduction of 8%, relative reduction of > 50% for ACTH arm at 5 yearsFor high risk (>4 positive nodes) disease free survival improved from 61% to 73% at 5 years because of herceptin. Absolute improvement of 12%Overall survival for the group went from 87 to 92%. Absolute improvement of 5% at 5 years.
Math teacher - Can you seriously say that if you had a 5 year risk of death from BC of 39%, you woundn't take Herceptin to up your odds to from 61% (chemo only) 73% (chemo plus herceptin)? I know you reject recurrence data (which is much more impressive than OS in the Herceptin trials), but for Her2+ BC recurrence usually predicts death since most recurrences of Her2+ BC are aggressive metatstatic disease, about 90% fatal, not the local non-lethal that is common for run-of-the-mill low to mid grade HR+ BC. Also overall Metatstatic BC has a cure rate of approx 2%. Thanks to Herceptin the cure rate of metastatic BC for Her2+ women is around 10% - sure absolutely dismal, but if it were me, I'd want that hope. I hate printing these numbers because it scares some women. But because you keep printing false information, I feel like I have to.0 -
Athena~ I could not agree more with your last post. Fifteen year survival statistics are based on treatment from the 1990's. My onc, who I adore, admits that they are making educated guesses on what is the best treatment. I asked my onc how the "cancer stats" could truly predict MY recurrence/survival rates because were all those women premenapausal? Were all those women physically active? Were all those women not overweight? Were all those women healthy eaters? The last 3 variables also being "known" as "treatments" that help prevent cancer recurrence. How are the "cancer math stats" comparing apples to apples for MY situation? He admitted that it's a valid point and there is no answer.
Since I am early stage it is easier for me to be more cavalier about aggressive treatment. If the cancer had been a higher stage I would have had tougher decisions to make. But as we all need to remember...we don't HAVE to do any treatment we don't want. We all have choices.0 -
As far as I understand it, in science there are no facts, only theories. So many solid well researched 'facts' from the past have been discredited that scientists prefer to call everything a theory, hence the theory of relativity etc. Most medical theories rely on statistics and imperfect research. Statistics can be used to prove anything, so the data may be correct but the collection and interpretation of that data are subject to error.
What a lay person would call a theory is really a hypothesis. What we would call a fact is a theory, and mathematics is the only discipline that can claim to be based on fact, subject to the above interpretation errors.
A brief study of the history of medicine shows that many old practices were quite ridiculous. I imagine that in the future, current forms of chemotherapy will be viewed as well intentioned but often harmful and very weak in effect. Not to mention a huge drain on health care costs. I'm being extremely polite here.
As to our well meaning medical specialists being right because of their intelligence and education, that doesn't stand up to scrutiny. Why is it that so many extremely intelligent and well educated people have opposing views on many subjects? (religion, climate, economics, seemingly everything) Simply because people tend to believe what they are taught and grew up with. In schools and universities, students have to go along with what they are taught or fail their subject. So people are, for the most part, pushed along a conveyor belt with little chance to jump off.
That's why I'm skeptical about everything, conventional or alternative. No one has the answers and to think otherwise is the perfect way to stagnate and never come up with the cure we all so badly want. We need people who are prepared to see things differently and not get shunned by established ideas and practices.
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Great post, Sheila.
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Cancermath is not only outdated it is not of any use for anyone with a tumor 5cm or larger or someone with more than 10 positive nodes. It also doesn't have outcomes for many of the chemos being used now or herceptin.
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Oops, my fourth paragraph doesn't make sense. To clarify, if we are all educated the same then we wouldn't have opposing views, but our views differ on the more controversial issues that are influenced by our families, friends, religion, politicians, media etc. But in medicine, universities and training hospitals are the biggest influence along with what the research journals decide to publish.
Those of us who follow alternatives do tend to ask 'why' a lot, but some like Mercola seem to always follow the alternative path no matter how weak the evidence. There is good and bad in all which makes me question the extremes. Are they just rebelling for the sake of it?
Athena, thanks, I spend at least an hour putting these posts together as my language skills are lacking and I'm always hunting for better ways to put things. I find your posts, along with Yazmin and Grace1, well put, well thought out and thought provoking.
I had to laugh when you doubted long term survival rates due to their being out-dated and then short term studies because they hadn't been around long enough to get the data. The sad part is that I think both views are right. I don't believe studies today have had enough of an impact to be taken seriously. As long as we are arguing their validity then the improvements if any are minimal. I hope you'll all agree that we need research that will be so blindingly obvious that there is no doubt and the benefits are obvious.
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Athena...I have to say this in support of mammoagrams..if I had skipped mine last fall as I was about to after eight years of squish, I can only wonder what would have happened with my 5 mm tumor? Great radiologists (same ones that maked my microcalcifications eight years ago with a little pin they left in after the biopsy) got it and I was able to have it out very early, BMX by my choice. So, while I know mammos don't uncover all, they uncovered mine. Minute changes. Could have been a very different story had I chosen to forgo it. I push everyone to get one.
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amen Sheila!
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Sheila: On the "outdated" part I was responding to some comments here disputing certain data on the basis that it was old. My response was that there is no way for the data or survivorship not to be old (you can't know if you survived cancer the day after treatment ends). If you want to know how something went in cancer you have to wait many years. Can someone please tell me how we, today, can have 15-year survival rates for people treated in 2010? It has to be "outdated." This isn't heart surgery outcomes or the flu. On the other hand, those same people are singing the praises of Herceptin with no knowledge of its long-term efficacy.
Anyway, if anyone has time and interest, here is other reading on cancer:
http://www.nytimes.com/2009/07/17/health/17screening.html?_r=1&ref=fortyyearswar
An interactive graph:
http://www.nytimes.com/interactive/2009/04/23/science/0424-cancer-graphic.html?ref=fortyyearswar
http://www.nytimes.com/2009/11/20/opinion/20aronowitz.html?sq=cancer lymph screening radiation&st=cse&scp=11&pagewanted=print
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Beeb75, you wrote: "...........Yazmin,This is not a disagreement between you and me. This is a disagreement between you and the scientific studies........" No, that's incorrect: the disagreement is between the scientific studies you have chosen to believe, and the ones I have chosen to believe. And the reason for this particular disagreement is the INTERPRETATION and PRESENTATION of said statistics (which, I have pointed out before, happens even between Governments on this planet, in Macro-economics (that's international economics)). And Member, you wrote: ".........I don't understand how you can say these cancers won't progress when they already have. If the cancer is in the nodes, it knows how to travel. ....."As is often the case, you are absolutely right: I did not mean to include the ones that are already in the nodes, and then say that those were not going to progress
.....I am talking about the Stage 1, 2, or 3 tumors that are and remain just that: some of those will simply not progress (towards death), even without conventional or "alternative" treatments.That's why I feel Research needs to apply itself to finding tools to determine WHICH treatment really benefits WHO, and also to reducing dreadful side effects. I know, I know, easier said than done: our scientists are brilliant and doing their very best; unfortunately, it is simply NOT easy to solve a (less than funny) "riddle" like breast cancer. In addition to the scientific difficulty inherent to understanding a complex phenomenon like cancer, exciting research is all but STIFLED by financial interests. Alas....... 0 -
Wornoutmom....how are you doing?
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