I may decide not to do chemo and radiation
Comments
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Beesie,
You've always got the right stuff! I think it was very important for you to point out that if looking at research, one needs to look at numbers for groups whose bc is most similar to yours. Comparing the considerations of a stage I woman to a stage III woman is apples to oranges.
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Yes -- Thanks for providing such clear language for naturalhealing to consider, Beesie.
A.A.
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In this scenario all women with this certain stage of breast cancer diagnosed are statistically considered the same. with as you say probably those doing alternative factored in. but no especially group of women is the same one to one. each has different medical histories for instance & genetic information. weight, etc etc which havn't been & probably can't be factored in. & I would think the study would need to be repeated a number of times in order to have a woman base a decision on it
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I' ask who funded these studies. there are so many ways statistics can be fudged. then I'd ask what do the survivors have in common? ethnicity? number of children (though in my personal data base most of the breast cancer women I've known have had children: 10 out of 12, but then most women do have children. ) weight? no family history?
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Abigail...we are moving in the direction where treatments will be "N of 1." That means treatments will be tailored individually, based on each person's unique genetics, history, lifestyle, etc. Furthermore, because we can better collect data, studies like the one my 89 year old mom participates in, The Nurse's Health Study, gleans valuable nuggets of info that can help create better studies leading to better treatments.
The bottom line is that I see a future where "alternative" and "conventional" will be blurred and eventually disappear. Until then, evidence based medicine, in its current state remains the gold standard that fuels medicine.
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Abigail, the CancerMath calculator isn't based on a single study, and the results have been verified in several ways
"The Outcome calculators are based on observed outcomes for United States
cancer patients from 1987-2007, with greater weight given to more
recent patients. Thus they do include data for any treatments used
during this time period.
However, the calculator may not reflect the full impact of treatments
developed later in that time period, or not widely used until later in
that period.
The breast cancer treatment calculator does take into account the
specific drugs (or analogues) listed in the treatment selection menu,
with the impact of the drugs calculated based on clinical trial results.""All calculators have been verified against cancer patients diagnosed
between 1987-2007 in the United States Surveillance, Epidemiology and
End-Results database. The breast cancer and melanoma calculators have
also been validated against a database of ~30,000 breast cancer and
~7,000 melanoma patients seen at Partners Hospitals""When verifying the accuracy of the calculators against independent data
sets (using different patients than the patients that the model
parameters were dervied from) the mean and median error across patient
stratifications are typically ~2%
Thus, if a calculator outputs a projected 15-year mortality of 16%, the
actual value may in fact vary between 14-18%. The accuracy is generally
higher for the most common types and sizes of tumors, and lower for the
rarer and the most advanced tumors." -
Beesie...I'm glad you make mention of the "United States Surveillance, Epidemiology and End-Results database," also known as SEER.SEER was created by two physicians who decided to be part of the information age! Here's some background I tore off of Wikipedia regarding it's history:
http://en.m.wikipedia.org/wiki/Surveillance,_Epidemiology,_and_End_Results
"SEER began collecting data on cancer cases on January 1, 1973,[citation needed] in the states of Connecticut, Iowa, New Mexico, Utah, Hawaii, and the metropolitan areas of Detroit and San Francisco-Oakland. By 2001 the program included information on major population centers in Georgia, Washington, Louisiana, New Jersey, Puerto Rico, Alaska, California, Kentucky. This includes specific Native American populations in Arizona, Alaskan Natives, and Hispanic populations in California.National Cancer Institute funds for the program are combined with funding from the Centers for Disease Control and Prevention (CDC) through the National Program of Cancer Registries[4] and with funding from the involved states.NCI staff work with the North American Association of Central Cancer Registries (NAACCR) to guide all state registries to achieve data content and compatibility acceptable for pooling data and improving national estimates. The SEER team is developing computer applications to unify cancer registration systems and to analyze and disseminate population-based data. Use of surveillance data for research is being improved through Web-based access to the data and analytic tools, and linking with other national data sources. For example, a web-based tool for public health officials and policy makers, State Cancer Profiles,[5] provides a user-friendly interface for finding cancer statistics for specific states and counties.Quality control has been an integral part of SEER since its inception.[6] Every year, studies are conducted in SEER areas to evaluate the quality and completeness of the data being reported." --------------------------------------------------------------------------------------------------------------------------- The amount of data collected from SEER has truly led to better treatments and outcomes for cancer patients. I cannot stress the enormous contribution the SEER registry has made to cancer research in the United States and abroad. Furthermore, as I mentioned earlier, numerous developed and developing countries are doing the same. Between the SEER database and the NIH's pubmed.org website, there is world wide transparency in cancer research. -
VR I am very familiar with pubmed as well as widespread fraud in cancer research. I understand that many people put their faith in these numbers because they believe they have been derived from credible competent sources.
Beesie,I wonder how many they wrote off as dead because they couldn't be followed.
Massive Government funded research studies, are flawed due to extraneous variables---big politics and big money.It's a mafia out there. Research is and always has been full of corruption.
http://articles.mercola.com/sites/articles/archive...
http://www.google.com/url?sa=t&rct=j&q=&esrc=s&sou...
http://cancercompassalternateroute.com/cancer/corr...
http://articles.mercola.com/sites/articles/archive...
http://www.ahrp.org/cms/content/view/734/55/
http://theamericanscholar.org/flacking-for-big-pha...
"This perversion is such an open secret that in 2003 the British Medical Journal
published a tongue-in-cheek essay instructing researchers in the fine
art of “HARLOT—How to Achieve positive Results without actually Lying to
Overcome the Truth.” David L. Sackett, director of Ontario’s Trout
Research and Education Center, and Andrew D. Oxman, director of the
Department of Health Services Research at Norway’s Directorate for
Health and Social Welfare, wittily summarized strategies by which
drugmakers use clinical trials to tart up drugs that are poorly
performing, dangerous, or both.""this expertise can also be used to introduce intentional bias in
order to attain the desired result: for the determined adept, there
exist many ways to subvert the clinical-trial process for marketing
purposes, and the pharmaceutical industry seems to have found them all"I can't allow allow outdated statistics from a severely flawed and corrupt system to outweigh my better judgement and common sense. The stats just don't jive with reality.
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So who's to say the opposite isn't' true with results from using alternatives instead? Conspiracies live all around us. Are our doctors being lied to? Are they lying to us? Is the guy pushing the cannibis oil for a "miracle" seeing $$$? I remember the comedian Andy Kaufman traveled across the world for a miracle and used "natural medicine". It was a hoax unfortunately. I'm not putting all my eggs in one basket. I am researching what else I can use when I'm finished with the traditional treatments. The best of both worlds you could say.
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Home mom- it's been happening on all fronts for ages. It's just that with the bigger money, there's bigger chance for corruption...more $ to gain, more $ to lose.
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Light and wind, just curious about your diagnosis, I see you do not have that in your bio. Helps to know where you are coming from.
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light...there is nothing stopping any researcher from having their studies published in journals and having pubmed.org publish their abstracts and full articles. In fact, researchers and clinicians are encouraged to publish. Following the Vioxx debacle, journals now dedicate space for researchers to declare conflicts of interest and where their research money is coming from. Again, making blanket generalizations is flippant. Unless someone lives under a rock, everyone knows that there are many ways that bias makes its way into studies. But that doesn't mean that ALL studies are biased due to money. You insult your intelligence and mine as well by making such generalized statements.
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Meadow, stage III, grade 3 ER+PR+ HER2- with positive lymph nodes and a high mitotic score. I had mx and oorph. I believe in the power of alternative medicine. The anecdotes that I read about aren't just a few. I can talk to the people and ask them questions. By and far I am witnessing mass destruction when chemotherapy, especially in the doses prescribed in "standard of care" is used. It hurts me deeply to see and I can't let that whole side of the truth be suppressed here on the alternative forum that was I think intended for people who use alternative medicine.
I think it is sad the members that have been on bco for years receiving support and getting to know other members, would have to go somewhere else to receive support because they didn't have any more better options than to seek alternative. It's just sad.
I don't have a problem with people educating people with information as long as it is supportive and kind and respects their choices such that Beesie had posted. But when no one is speaking up about the hazards of chemotherapy...I figure someone has to do it.
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light...just wondering if you ever read the NCCN professional version of the breast cancer treatment guidelines and if you have read the footnotes including the criteria for the various levels of evidence?
You do understand that the standard of care for all types of breast cancer have different levels of evidence. My level of evidence was "2B." Not a slam dunk type of level. The DH is going to begin doing a heart treatment that is a level "2B" as well.
So, bear in mind, if "alternative" researchers and clinicians do wish to be included in guidelines, getting published is the first step toward garnering an established level of evidence for treatment.
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When I asked, my onc told me the risk of life-threatening complications from chemo is less than 1/2 of 1 percent, with most (not all) of those being elderly who have other serious health problems. For the women for whom chemo is recommended due to their tumor type/stage, the risk is there, but much lower than the risk from not doing the treatment. I went ahead and did dose dense ACT for my triple negative stage 2. My choice based on weighing the risks and benefits.
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I would say that I also went for the "what else can I do"? This, after opting to participate in a study where I got SIX dose dense each AC followed by Taxol. I exercised throughout treatment, of course scaling things back. My goal was to land on my feet and I did.
I was about two years ahead of most people with the exercise. This was 5 years ago. After treatment, exercise is the single most important thing you can do. This has been shown on both sides of the Atlantic with meta analyses of BC patient data. Not to mention the health benefits. Because I don't want heart disease or diabetes either.
The other one, and we won't have clinical data on this for at least a decade....is Aspirin. This was found via analysis of the Nurses' Study data. Talk about something cheap!!! Much cheaper than cycling as anyone who has had a bicycle tune-up or bought ski tickets can attest.
Both of these independently reduce the risk of recurrence by ~40-50%. I have no idea what combining both does, and I don't care, just that I plan to do both for the rest of my life.
The person who made the Aspirin discovery is looking for funding for clinical trials. So we will eventually know. I'm not waiting as I tolerate Aspirin very well. (Those of us who cycle something like 35 miles which I may do later today are usually hurting somewhere anyway.) I was able to start Aspirin three weeks post chemo, so what I did.
The other mentioned is maintaining a healthy weight. I am a bit on the "overweight" side, but my internist and oncologist aren't worried. Because a lot of this is muscle.
Some of the most interesting stats are not SEER or NCI data, but from two of the top cancer centers....MD Andersen in Texas and the Seattle Cancer Care Alliance at the University of Washington. At SCCA, they were astonished to learn that currently 90% of Stage III patients live 5 years or longer; MD Andersen has similar statistics for "regional cancer", which is what it would have been called back in the day.Did I mention that I get to eat????
How much exercise do I do? I use a formula that makes sure I can eat and not gain weight. So most often 40-60 miles of cycling, 2 5k runs, 3 evenings of 2 mile walks. Plus a routine of free weights and one of crunches each weekday. I participate in at least 4 cycling events each summer to make sure I train. I have one coming up in 2 weeks. 60 miles of HILLS to help with supporting local women in need of protection from abusive relationships.
Looking back at chemo, it was a not fun time in my life, but I have had others. I got through just fine, and I will be forever grateful to my friends. Now, I am stronger and fitter than ever and doing interesting and challenging work. I have a new beau (who I met at a cycling event).
I feel beyond fortunate and blessed. Because 70 years ago, I most likely would not have been here to enjoy this part of my life. I was on a course to not be here a couple of years back. About 80% certain, and the surgery would have mutilated me.
So a long post with the point being that in my book Alternative has a place, but when the odds are dismal otherwise, you go with the best medical science has to offer. Suck it up and move forward. Figure out how to land on your feet on the other end. Dial your life down and keep going. Because life can be wonderful on the other end, and for most of us, this hardly the end, but no worse than one of life's sucky moments. - Claire
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Clare, good points. Post treatment, I drink no alcohol, dramatically boosted my vegetable intake, and am working on the exercise. These are non-medical steps that reduce recurrence risk for TNBC.
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claire!!! You sound GREAT!!! I have to laugh though about the Nurses study which my mom is a part of! She is 89 strong and fills out her survey every year since the inception of the study. When she declares an illness, she receives more follow up questions. When she was diagnosed a few years ago with a very rare favorable lung cancer, she said she could only imagine the number of follow up questions she would have to answer on the comprehensive Nurses study! Suffice to say, she is doing extremely well! And yes, she does take a baby aspirin! But here is the kicker, she has never dieted, drinks beer and eats ice cream, loves to gamble and of course is also a voracious reader! Go figure!
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it's been proven that plant based diet + exercise are the way to stay in remission. Tell me something I don't know.
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I'm wondering if Aleve has the same protective benefit as Aspirin. I take Aleve pretty regularly to deal with my sciatica. Hate to further risk stomach issues by also taking a baby Aspirin.
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Light thanks for sharing your diagnosis, and I am thankful your treatment path has worked for you. And I agree, it is on this very forum that alternative treatments should be discussed and shared in a non threatening atmosphere. I come over here to add the wisdom of the naturalpaths in to my conventional world...I know there are amazing natural things to help me fight the beast and stay NED. ButI know I needed chemo to survive the past year...My cancer is too aggressive, stage 4 at diagnosis by my oncologists standards, and time was of the essence. I am not a statistic junky, they just dont stick in my brain, but my Onc said I had one year if the chemo did't work. Thank God it did, and now I can turn my diet and life on a more healthy path to add that to my arsenal for good health..Do you see how I needed both conventional and natural? The risk to others is to only advocate a natural path for them, when we are all so unique and it really takes each person judging what is best in their own situation.
I find strife and discord to be very upsetting to me these days, I so hope those coming here to learn and discuss can continue to do so in the kind manner we all need. We all really do have our own and each others best interests at heart.
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VR I would think that the gross generalizations made by the cancer industry, with research that was created by the cancer industry (well known to be corrupt), and their calling it math (something we all rely on) would offend you more than a generalization from little ol me.
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Meadow, thank you. Your heart came across in your message and I wish you continued success. I'm very sorry if I have upset you.
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Thank you Lightandwind, you are sweet to say that, and I am ok.
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Meadow, I love your post. As a fellow Stage IV, I know exactly how you feel. Much love to you.
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love to u too leggo!
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yorkie - the thought behind aspirin being beneficial for cancer patients is based on its inhibition of cox enzymes which are connected to inflammation. Aleve is naproxen, an NSAID, which does this also. I wouldn't think you would need to add aspirin.
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Thanks Special K. Those were my thoughts also.
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Claire's post points out the strength about non-chemo measures -- doing everything possible to get rid of unhealthy habits plus making consistent use of healthy habits as common sense measures. The weakness of that is that those things are not usually measured and not easily measured routinely as part of studies done to measure effectiveness of therapies such as chemotherapy.
My understanding is that chemotherapy is believed to produce a helpful effect in somewhere between 1/5 and 1/4 of those who employ it as a strategy. Without any consistent concurrent measurement of such non-chemo measures as diet and exercise, etc., there isn't any way to know to what degree the positive effect in 1/5 to 1/4 is due to the chemo or to non-chemo measures or both. If such genuinely disciplined research was being done, we wouldn't have to be here arguing about it. We'd have proof. Desperation is one basis for rationalizing the failure to find a way to concurrently measure accurately the benefit accruing to patients that would be due to non-chemo strategies and encourage the rather poor success rate of 1/5 to 1/4 when using chemo as a strategy.
As hard as it is to do such treatments as chemo, there is a tendency to believe that products such as chemo treatments that have a purchase price somehow stands to be "better" or "more effective" than "non-chemo" treatments like weight maintenance or healthy/non-synthetic diet, or consistent exercise. That belief is fostered by the heavy emphasis on researching synthetic chemical treatments and the failure to put that same effort into measuring "non-chemo" strategies like diet, exercise, etc. And that results in a bias favoring such strategies such as chemo, where the stats would be less truthful.
A.A.
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VR, one thing about the "future" therapy that you mention, N of 1, that is still unclear to me is the method involved in discovery and production of the therapies matched precisely to each individual patient. I am trying to visualize just how any entity would go about financing the discovery and production of perhaps millions or trillions of "medications" (treatments) that would be applied for one-time individualized tailored treatment to each patient characteristics.???
A.A.
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