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Will 30% of Early Stage (1-IIIA) go on to metastasize??

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  • jojo68
    jojo68 Member Posts: 336
    edited November 2013
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    Amylutya...I am so sorry to hear this.  Wishing you all of the best and sending huge hugs....xxoo

  • jojo68
    jojo68 Member Posts: 336
    edited November 2013
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    @Yorkimom...we had to limit ourselves to our own forum because we could not share comfortably w/out being ridiculed and attacked on the regular forums.  Doesn't much matter, as we still get ridiculed and ripped apart on 'our own' forum.

  • [Deleted User]
    [Deleted User] Member Posts: 1,017
    edited November 2013
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    MOMINE - THANK YOU.


    Susan ( original poster) would you please add Momine's post to the beginning of YOUR original post, I think it will help many to don't read the whole thread ( which sadly has gone into a usual for BCO "argument" about treatments)


    THANK YOU MOMINE


    tracked down that 30% thing, because it just didn't sound right. The statement is attributed to Dr. Iman Mohamed, a breast cancer specialist. I tweeted her to ask what this number means. She kindly responded that this is the average recurrence of all breast cancers if not treated with systemic therapy (chemo, tamox, AI).

  • rozem
    rozem Member Posts: 749
    edited November 2013
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    ... I need to jump in here. Joellelle your signature line says you had DIEP - Im sure your plastic surgeon made a good load of cash on that surgery. Money makes the world go 'round - yes the big pharmas and ins companies make money but so does every business including your alternative med providers. I have nothing against complementary approaches but saying that the reason chemo and other meds are used is SOLELY to make money is grossly incorrect in my opinion. Talk to all of us ladies who have had Herceptin and tell us that that drug isn't worth the money - yes Im sure genetech has made lots of money on it but it has also saved thousands of lives (it takes a hundreds of millions to bring a drug like that to market), they deserve to profit, it allows them to invest in finding new targeted therapies which is the way of the future

  • jojo68
    jojo68 Member Posts: 336
    edited November 2013
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    My argument has never been based on profits etc...Only reason I mentioned profits is because that is ALWAYS the argument thrown back at me when I make any holistic comment.  Selenawolf threw the 'conspiracy money making' at me and I answered her money making comment.  That is never what my stance is solely based upon.  Of course, I know my plastic surgeon made some money on me...nothing compared to what chemo etc makes...but she made some.

  • jojo68
    jojo68 Member Posts: 336
    edited November 2013
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    Look, I really don't care to argue anymore, that was not my intention.  I really could care less what treatment we each do.  I was merely sharing another train of thought to those who may be interested...and, of course I get things thrown at me.  Why is it okay for you all to share articles but not someone coming from a holistic point of view?

  • jojo68
    jojo68 Member Posts: 336
    edited November 2013
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    There does happen to be some concern with cancer stem cells surviving chemo/rads and becoming stronger.  There is no denying this fact.

  • [Deleted User]
    [Deleted User] Member Posts: 1,017
    edited November 2013
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    Sorry this thread has turned into a "for or against" treatment. There is an Alternative Forum just for the kind of imformation Joellelee seems to be looking for. Thank you rozem for your comments.


    Joellelee you write in your post:


    "I guess I knew this would be a touchy subject and knew some of you would be closed minded. This is the complimentary forum where we all provide ALL sides of info. Of course, those of you so close minded are the ones trying to rip my posts apart. So much for freedom of info and info sharing!"


    THIS IS A STAGE 1 Forum. It was a discussion about the original posters comments. Interjecting an article about the "dangers" of radiation, with the disclaimer at the end, as kindly emphasized by another poster, was just trying to incite anger, response.


    THIS IS NOT THE ALTERNATIVE FORUM.


  • SelenaWolf
    SelenaWolf Member Posts: 231
    edited November 2013
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    Joellelee...

    As a practising witch, I have a very healthy respect for natural supplementation, just as I do for conventional pharmaceuticals.  I have a very large herb garden which combines medicinal, culinary and magical herbs, and I use them all.  However, being a witch, does not mean that I ignore other compounds that are also what I consider "natural".  If it is of this Earth, then it is natural.  That makes conventional treatments such as chemotherapy and radiation "of this earth" just as much as Vitamin D and natural supplements.   Chemistry, physics, medicine, are all "of this earth" just as much as the grass, the trees and the ocean and are - equally - valid.  I have no problem using natural substances, in fact I prefer it.  Almond oil for my face, a home-made calendula ointment for my hands and feet and various herbal tisanes to help with my raging insomnia.  I prefer the "whole food, slow food" approach.  I avoid, when possible, highly-processed food or food that is heavily preserved.  I try to live as healthily as I can in this great wonder that is Mother Earth.  I don't take any medication unless it is absolutely necessary.

    And, for the most part, I have absolutely no objection to different opinions about how to treat cancer, but what I struggle with is when people put their own slant/bias on things and present something as a fait accompli when it really isn't.  The study you quoted did, indeed, discuss that cancer stem cells can be resistent to chemotherapy and radiation.  This is a known fact.  But the original source, in no way, stated that chemotherapy and radiation make cancer stem cells more malignant; it just stated sometimes these cells were resistent to any- and all treatment.  Also a known fact.  And, in no way, did the article suggest that you should be afraid of chemotherapy or radiation because of this; in fact, the doctor quoted in the article stated - most emphatically - that radiation was and still remains a safe and effective treatment for breast cancer.

    Being a witch does not close my eyes to alternatives; it does just the opposite.  I read with interest all the articles about nutrition and supplements, and how what we eat can affect us.  But being a witch does not mean that I throw logic and critical thinking out of the window, and take everything on faith alone.  If someone is going to make an absolute statement about something, i.e., "... chemotherapy will kill you..."  then: 1) I want to see your source; 2) I want read through the article myself, and check all the references and studies cited; 3) I want to see who funds the research in order to isolate bias; and 4) reach a reasonable conclusion based on the facts.  I do the same when someone states that, "... echinacea will cure the common cold...": I want to see the source, read the article, double-check the references and studies cited, see who is funding the article, and research the credentials of the author(s).

    The creed of the witch  is "... to know, to dare, and to will ..."  Not to accept blindly and without substance.

     

  • [Deleted User]
    [Deleted User] Member Posts: 1,017
    edited November 2013
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    SelenaWolf, thank you AGAIN for your perspective, for "Drawing Down the Moon."

  • SelenaWolf
    SelenaWolf Member Posts: 231
    edited November 2013
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    Merry Meet, SunflowersMA.  And thank you.

  • lago
    lago Member Posts: 11,653
    edited November 2013
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    joellelee I'm sorry you feel ganged up on here. I know I had that happen to me when going through chemo… and these gals were really mean, nasty, attacking my personality and stalking my posts back in 2010. There was no separation between alternative and complimentary back then. I actually stopped posting because although I was interested in complimentary and the mean gals attacks didn't bother me I found that others on the threads were getting upset. Sometimes we forget that there are people newly diagnosed and currently going through treatment. They have made a decision and no need to have them upset or 2nd guess at this point. While there is nothing wrong with you presenting your choices sometimes people feel can feel you are suggestion they made the wrong choice.


    In my case there was a 40% in my case (according to my onc) that I didn't need any additional therapy beyond surgery and would still be NED in 10 years. For me the odds were a bit different from this stage I group and a bit closer to your odds although I was HER2+. Adding another 46% was worth all the treatment I had. In your case you might be right. There is always a percentage that don't need further treatment… and some of those alternatives may work but until there are double blind studies proving it most of us aren't willing to take that risk.


    Ironically last night watching an old law and order the issue of alternative quacks was addressed. Yeah they are out there.

  • ruthbru
    ruthbru Member Posts: 47,134
    edited November 2013
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    I am 100% pro-complementary, but I am also 100% glad that I did the standard of care treatments as well....standard of care because of brave women who volunteer for clinical trials; which through the gathering of data scientifically has shown what are the most effective treatments known at this time (sadly, we all know that 'most effective' does not mean 'always effective'). Of course, it will be a wonderful day when doctors can say with certainty, "Yes, you are, for sure, cancer free & no more treatment is needed." or even, "You absolutely, for sure, need (fill in the blank)." But we are not there yet.

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,933
    edited November 2013
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    Joellelee,


    Forgive me and my limited knowledge. I misspoke , as I imagine we all do. Although I said the yew tree stuff, not the tree itself. Granted, it was not very articulate, but I didn't mean the tree. Taxol is patented, not the yew tree. I humbly clarify my earlier statement and hope this elucidates what I intended to say. Joellelee, you can come correct papers in my class anytime!


    Caryn

  • [Deleted User]
    [Deleted User] Member Posts: 1,017
    edited November 2013
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    "ganged up on" - really, are we going to start call it "bullying" again when someone brings a slanted/biased report into a thread, and then complains that report, which doesn't apply to the topic under discussion, is not getting a "fair hearing." This is NOT the Alternative Forum. It is a Stage 1 Thread.


    If someone wants to discuss Alternative approaches, there is an ENTIRE Forum now open for that approach.

  • beesie.is.out-of-office
    beesie.is.out-of-office Member Posts: 1,435
    edited November 2013
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    "Not speaking of conspiracy...speaking of big business and money...speaking logically. People use the word conspiracy as a fear mongering tactic so as to not look at the issue any further."


    Big business and money? jojo68, the author of the article that you posted has served as a consultant to the natural products industry and the health and wellness field. Natural products.... now that's big business! That's how he makes his money. So speaking logically, wouldn't you expect him to be just a little bit biased in what he presents and how he presents it? Or maybe a lot biased? He has a product to sell just as much as any pharmaceutical company, and he has an image to maintain. He is selling himself.


    And fear mongering? jojo68, you said "Was just food for thought for those 'on the fence'...I would be very scared as well if I had done chemo and/or rads." How is your statement not fear mongering? And isn't fear mongering (raising doubts, raising concerns) exactly what you are trying to do by posting this here in the Stage I forum?


    Given that "we still get ridiculed and ripped apart on 'our own' forum", why did you think you would get a positive reaction here in the Stage I forum? Why did you post this in the Stage I forum?


    .


    EDITED to change joellelee's name to jojo68, her new screen name. jojo, did you think that maybe people wouldn't know that all of us were referring to you and your posts if you changed your screen name? Loopy

  • [Deleted User]
    [Deleted User] Member Posts: 1,017
    edited November 2013
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    Beesie - you make me smile ThumbsUp

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,933
    edited November 2013
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    I'm not too sure many of us have our minds closed. I do know that many of us do, however, require evidence based research and trials when making tx decisions. Anecdotal evidence, while a good start, is simply not enough for many people. I lived in a third world country. Most healers and remedies were traditional, natural and based on centuries of anecdotes. The average life expectancy for men was about 45 and lower for women. Child mortality was 50% until age 5. Natural immunity was very big there and it did work for the 50% of kids who actually did live past 5. Pollution was limited as there was little industry, relatively few cars, no commercial cleaning products or personal care/cosmetic products. Foods were grown without pesticides (looked ugly, tasted great) and people shopped daily so everything was fresh. Many of these are very good things but they did little to lower childhood mortality or extend lifespan. Smallpox had finally been wiped out a few years before I lived there, but only due to vaccination programs. The anecdotes, stories and centuries of traditional healers just don't provide the evidence many of us seek.

  • AlaskaAngel
    AlaskaAngel Member Posts: 694
    edited November 2013
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    The focus of this thread was to find as much info as possible to determine how people felt about the statistic of 30% and what that 30% actually referred to. I'm glad the OP stayed with the discussion and edited her original post to reflect what she learned from it.

    With such a complicated disease where practitioners freely admit they can't garantee that ANY particular treatment will definitely prevent recurrence, the discussion includes how people FEEL about what the statistics mean to them. 

    The edict that there can be only one forum that can discuss perceptions about treatments that are not "conventional" is in itself a forced bias against open discussion and favoring conventional treatment. That restrictive focus demonstrates the insecurity about treatments based on scientific experimentation.

  • voraciousreader
    voraciousreader Member Posts: 3,696
    edited November 2013
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    Dr. Eric Topol (The Creative Destruction of Medicine) recently interviewed Dr. Paul Offit for Medscape regarding his terrific book, Do You Believe In Magic.


    This interview that Dr. Topol has with Dr. Offit is an EXCELLENT summation of Offit's book. Hope some of you have a moment to either read the summary or watch the video. Will NOT disappoint!

    "Introduction


    Dr. Topol: Hello. I am Dr. Eric Topol, Editor-in-Chief for Medscape. We have a great session of Medscape One-on-One today with Dr. Paul Offit, who is the head of the Infectious Diseases Division at the Children's Hospital of Philadelphia (CHOP).


    He has written a very interesting book that takes on the whole supplement, vitamin, alternative medicine, and complementary medicine era. It's really a delight to be able to welcome Paul to Medscape. Welcome, Paul. It is great to be with you.


    Dr. Offit: Thanks, Eric. Thanks for having me.

    Positive Reaction to a New Book


    Dr. Topol: Back in June, you published the book Do You Believe in Magic? What has been the reaction so far?


    Dr. Offit: It has been overwhelmingly positive. It is surprising, actually, certainly from academics or those interested in communicating science or health to the public, it has been embraced. People are glad that somebody stood up and tried to explain this in a reasonable way. But not surprisingly, I have also gotten some pretty negative responses because, in a sense, I have attacked the church of vaccines and dietary supplements, and that belief system has been defended by some.

    Exploring Linus Pauling's "Dark Side"..."


    http://www.medscape.com/viewarticle/811569

  • voraciousreader
    voraciousreader Member Posts: 3,696
    edited November 2013
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    ....BTW... The profits from Dr. Offit's book will be donated to charity.

  • AlaskaAngel
    AlaskaAngel Member Posts: 694
    edited November 2013
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    I'm skeptical of the gurus at the extremes of either end of the discussion, both "scientific" AND "natural".

    As was pointed out earlier in the discussion, the "scientific" statistics are limited to referring to 5 years or 10 years or 15 years. This forum is for people to discuss stage 1, in which the vast majority would never recur even if they had no treatment beyond surgery. But by presenting studies that only show such limited time frames, those "statistics" create an invisible bias because they cannot show how many patients would or would not live longer than the time period studied. Where this is of really significant importance is if we fail to understand that with stage 1 the recommendations for treatment are exposing a vast number of patients who we know probably will not ever recur with anything more than surgery, in order to treat the few who would recur -- and of the few who would recur, some will recur regardless of treatment. As the predictors indicate, we do not yet know whether we are hastening worse outcomes for the many due to treatment who would never have recurred otherwise.

    In addition, there are no nicely laid out statistical numbers provided to indicate the percentages of patients who recur due to treatment, even within the 5-, 10-, or 15-year range. That possibility is genuine, yet is not accounted for in the predictors that we "rely" upon for being "scientific". Why isn't that information provided, or at least indicated clearly to be a possibility for us to consider?

  • claire_in_seattle
    claire_in_seattle Member Posts: 2,793
    edited November 2013
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    Thank you for this link. Just fascinating. I thought many of the written comments about the video were just frightening. A lot of these people are practicing medicine!


    BTW....I am all for an "integrative approach" and I will count exercising through chemo as part of this. I think that anything that relieves and promotes well-being is good....but not as a replacement for evidence-based therapies.


    Research that produces game-changers in the world of cancer treatment is extremely expensive. Years of work developing (and getting approval for) a single drug, and only a very small percentage of ideas tested yield a medication that is effective and relatively safe. That is what is reflected in the cost of medicines that have not gone generic.


    Producers of supplements do not have to incur these costs. Or even test on patients for effectiveness.


    A key point with vitamins....something close to the recommended daily dosage is probably a good thing. But taking something 100x this strength is something I would want to question....


    Oh..... and I get my resveratrol the "natural way".....SALUT! - Claire

  • voraciousreader
    voraciousreader Member Posts: 3,696
    edited November 2013
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    Claire... I too, was surprised by the comments. Very surprised.

  • ruthbru
    ruthbru Member Posts: 47,134
    edited November 2013
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    Interesting link, thanks. Like everything else in life; if it is too good to be true....it probably isn't.....

  • SusansGarden
    SusansGarden Member Posts: 754
    edited November 2013
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    Whoa, what happened? I haven't had a chance to read through all the posts but things appeared to have worked themselves out. :) I did add Momine's comment to the original post. Maybe I will BOLD it. Anyhoo...I appreciate the continued discussion and look forward to reading through them.

  • SusansGarden
    SusansGarden Member Posts: 754
    edited November 2013
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    AlaskaAngel, you bring up some interesting questions! And I also am skeptical of those at the extremes.


    VR ~ I'll have to check out your link when I have more time - looks interesting.

  • corky60
    corky60 Member Posts: 453
    edited November 2013
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    This has been one heck of an interesting discussion. It has ranged all over the place but has managed to get back on topic several times. Does the 30% statistic include the BRCA1 and BRCA2 cancers? I was telling my husband about this thread and he wondered that. I had to tell him that if this was discussed then I missed it.

  • JaneB1
    JaneB1 Member Posts: 2
    edited November 2013
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    Very interesting discussion. I didn't realize that the 98 percent figure includes DCIS and LCIS. What is the percentage without those? I too think it is misleading to include Stage 0 cancers.


    As for chemo and radiation as well as Herceptin and Tamoxifan etc., yeah they are not necessarily ideal treatments as they can cause other problems, but they are all we have at this point and they have been demonstrated in many reliable studies to work! I know a Stage 4 woman who is on Herceptin and doing wonderfully -- living and enjoying life. That's nothing short of miraculous.


    Having said that, there is still the fact that thousands of women die every year from breast cancer after enduring all recommended treatments, so treatments, while proven effective, are not a panacea. We need far more research.


    And no one should forget, ever, the huge amount of money involved in all aspects of cancer treatment -- and that money is a huge motivator. There was an excellent cover story in NY Magazine a couple of weeks ago entitled "The Cancer Drug Racket". It detailed how oncologists at MSKCC and elsewhere are refusing to use certain new cancer drugs due to the fact that their price is not justified by the increased survival which is sometimes only 3 or 4 weeks at most. I have a friend who works for a big pharmaceutical company and she says oncology rules that place. Apparently, other drug classes don't even come close to cancer drugs in profit-making. Yet the article goes on to detail certain new drugs that are highly effective and extending lives by years. It then asks the question of what price do we put on truly effective new drugs? Is $500,000 per patient per year reasonable? If so, what about $1,000,000 per patient per year? All very interesting with no easy answers.


    Does this mean we should all turn to alternatives? Absolutely not. Alternatives are so unregulated and untested in the U.S. (thanks, Senator Hatch), that one cannot reasonably rely on anything claimed about them.


    There does seem to be some support for the notion that diet and exercise help with recurrence. I have read and tried to follow the suggestions in "Anti-Cancer". I am thrilled to have lost the extra weight I carried around for several years. But, will it prevent recurrence? Don't know.


    Cancer is a horrifying and notoriously cagey and creative killer. We need more research -- not just for new drugs but for the root causes and how to prevent it. At present there is a bias toward treating it rather than figuring out how to prevent it. Why? Because treating it is so lucrative. Unfortunately, charities, drug companies, etc. want to perpetuate their existence -- not put themselves out of business!


    There is a potential vaccine for breast cancer that stops it dead in its tracks in mice. Cleveland Clinic has finally found venture capital funding to start a Phase 1 clinical trial (after having been refused funding by several well-known breast cancer charities). It will be several years before we know whether it is effective in humans. But, it could be a real game changer in breast cancer if it is.


    I continue to hope and pray that someday people will hardly remember a time when women died of breast cancer -- before the cure was found.

  • gemini4
    gemini4 Member Posts: 320
    edited November 2013
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    debDylan, very interesting and true about how many differences there are in breast cancers, and how it's really hard to look at statistics that group all the different types as a single disease. In "real life," (unlike this board where most members have a sig line with their particular type of cancer) it is difficult to compare stories with others who've gone through BC because of the many variables. At my lowest point during treatment, when I needed to decide between a MX or LX with rads, I lashed out a bit at my well-meaning sister who was urging me to talk to a friend who had had BC to help me decide. I said, "unless she had stage 1b invasive lobular carcinoma, I don't think she can help me!" And even one of my oncologists remarked that it's true that many times Stage 0 can warrant a MX because of its scattered nature where a larger stage tumor can often be removed with LX and rads. But for the most part, breast cancer is simply considered breast cancer -- without taking in to consideration the many different types and stages. When I hear of someone having BC, my first question is, what stage, what hormone/her2 type?