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Survivors who have used only alternative treatments

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  • 1Athena1
    1Athena1 Member Posts: 672
    edited February 2011
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    Gracie, thankls for remindiing me. Cancer death rates cannot be assessed in crude numbers or in per 100 000. Age and population- adjusted data is best. There are other complex variables involved. I posted a link to a Nyt article on expert consensus that death rates from cancer have scarsely budged in 40 years.

  • luv_gardening
    luv_gardening Member Posts: 362
    edited February 2011
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    lago, those charts are for ages up to 69.  I wonder if the reason for the improvement in overall survival is that the most common age for primary diagnosis of BC is the 50's.  So now we have the hormonals, which delay the onset and survival time of secondaries.   That seems the most likely reason for the noticeable change around 1990. Those women in their 50's are more likely to survive past age 69 so they are off the chart.  And of course for older women they are now more likely to die with their cancer rather than from it, so there is an overall improvement.

    So women get a clear advantage from the hormonals but eventually they stop working and the women die later than they would have.  They are not cured by their primary treatment or ongoing hormonals, but obviously the hormonals have improved our situation dramatically if we are estrogen positive.

  • leggo
    leggo Member Posts: 379
    edited February 2011
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    ...and yes Athena, I am surprised by the misunderstandings as well. All anyone has to do is ask their onc to know overall survival does not change. I would hope they (oncs) know what they're talking about.   

  • Member_of_the_Club
    Member_of_the_Club Member Posts: 263
    edited February 2011
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    Athena did you see the charts?

    Sheila, I don't know what you mean by die with their cancer.  The studies I'm familiar with indicate that hormonals don't just postpone recurrences, the prevent them.  I also question the stat about most common age for diagnosis as it is my understanding that more and more younger women are being diagnoses with bc.  Maybe that would average age, but then as many are younger as are older.

    The fact is that the charts and the data behind them show a dramatic drop in deaths by breast cancer. 

  • AlaskaAngel
    AlaskaAngel Member Posts: 694
    edited February 2011
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    Just in case Worn Out Mom might be still reading to see if anyone answered her question... I am posting because there seems to be a blind spot throughout the responses about one particular important factor to consider, whether one favors addressing it with chemotherapy or not.

    When I was considering what to do as a HER2+++ in 2002, neither trastuzumab nor any aromatase inhibitor was available for adjuvant treatment. At that time I asked an onc (who was considered to be one of the best) if choosing to accomplish ovarian ablation (which is a major goal of chemotherapy) by having my ovaries taken out surgically, plus adding hormonal therapy  with tamoxifen would achieve the same level of treatment with less toxicity. I wanted to see where he had done his homework for that question, and I wanted to see the numbers. I did not get any answer to that question from him.

    Were I diagnosed today I would be asking for a clear answer to that question or ones similar to it. Where has the homework been done on this, given that ovarian ablation is a major target of the use of chemotherapy? One of the reasons chemotherapy fails in youger women is because it is so hard to make younger women truly postmenopausal. If you can accomplish it in a less toxic manner, why not at least use THAT in your approach? Becoming menopausal so young is a problem whether you do chemo or you don't, since it changes bone health. So you would need to address that over time (weightbearing exercise, supplemental vitamin D3, supplemental calcium, etc.)

    In regard to being HER2 positive (grade 3), I do speak from actual "alternative" personal experience, since I did not receive any trastuzumab, and by the time it was offered at 2+ years out from the treatment I completed, I refused it. You will also note by my signature that I have refused the use of any aromatase inhibitor, and I cut short the recommended length of time for taking tamoxifen. Please note that I did so as a an older woman at age 50+ as a high-risk stage 1 patient, and take that into consideration.

    I personally ended up doing chemotherapy. However, I have had no taxane as part of treatment, either.

    I am 9 years out and have had no recurrence. I regret doing chemotherapy because to this day there still has been no clear answer to the question I asked my oncologist, only more and more trials wtih toxic drugs, as if there is no need to bother to prove that less toxic therapy either works for some, or not. There are women out there like me who would be willing to be the participants in that kind of a study. I would have been delighted to do it at the time of my diagosis.

    In the same inexcusable and unscientific manner, since trastuzumab trials for the most part excluded the healthiest and broadest section of breast cancer patients (stage I's under 2 cm OR node-negative) there is no clear evidence one way or another to show whether trastuzumab ALONE used for the vast majority of breast cancer patients who are HER2 is adequate without chemotherapy. They have some data indicating that it improves upon chemotherapy, but they haven't "bothered" to verify how effective trastuzumab is all by itself -- without the collateral damage from combining it with chemotherapy and all the support drugs used with chemotherapy.

    By some scientific magic, despite not proving one way or another what the effect was for stage 1 breast cancer patients who were node-negative, they then decided to apply its use to that group as a rule. Remember, that is the group of HER2 patients that is the largest group of all the HER2 positives due to earlier detection rates, and the healthieast and least likely to ever recur, to begin with.

    I accept that trastuzumab may be worthwhile for what I understand is about 50%, and of that 50%, for a considerable number it later fails. It is substantially expensive. I certainly think it is worth a shot for worn out mom if she can get access to it. Most of the women in this world cannot.

    Because chemotherapy is given with support drugs, the trials also have not done anywhere near an adequate job of determining how the outcomes are affected by the use of the support drugs, such as the extensive use of steroids. Since it appears that weight gain goes hand in hand with higher recurrence rates, and since steroids given with chemotherapy can cause weight gain, and since patients who accomplish menopause usually end up with weight gain and a metabolism that has slowed down to a crawl almost "overnight", have oncologists done their homework to find out how many of the patients they have "saved" with chemotherapy then recur due to the obesity caused by the support steroids used during treatment?

    I don't know what other people have experienced in that regard. I was well within a normal weight range at time of diagnosis after 5 decades of maintaining a normal weight. Since then, my new norm has been 25 pounds heavier, even after struggling and achieving over a 6-year period a weight loss of 25 pounds. According to the most recent data, those over age 50 will need to spend one full hour a day 7 days a week to maintain in a normal weight range. This weight gain caused by treatment also increases the risk for all kinds of other types of diseases in the body.

    Have you received counseling explaining the high risk of SE's involving sexual response due to actual aging of the body with dry vagina and lower libido? Or are your medical providers not providing that information to you either? Most do not get a "round tuit", given that it is not their sexuality that is at risk.

    If I had it to do over, I would find an oncologist who HAS done the homework, and ask for trastuzumab, and surgical ovarian ablation, and perhaps hormonal treatment. But that is just me. I like proof, not fear tactics.

    AlaskaAngel

  • luv_gardening
    luv_gardening Member Posts: 362
    edited February 2011
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    I just mean that a woman diagnosed in her 70's is more likely to die from other causes even if she gets mets whereas before tamoxifen or AI's she may have died from BC mets.  It's a common saying, to die with an illness rather than from it.

    I believe deaths are postponed, not stopped, which is a great way to improve 5 and 10 year statistics but does not necessarily improve overall mortality.  And of course I am all in favour of a longer life and take tamoxifen myself.

  • Member_of_the_Club
    Member_of_the_Club Member Posts: 263
    edited February 2011
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    It was not my experience that there were enough steroids during chemo (and I had 8 rounds of chemo) to cause weight gain.  I lost a little weight and I was told the steroids were below the level that would cause weight gain.  I do know that many women have their metabolism change through treatment, and go through menopause, which does cause weight gain.  In a sense its because of treatment but it would eventually happen because the norm is to gain weight during menopause.

    This wasn't my experience, BTW.  I lost weight during chemo, gained it back and eventually, while on hormonals, lost more.  I know this is not the case for everyone. 

  • lago
    lago Member Posts: 11,653
    edited February 2011
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    I gained 8lbs on chemo because after tx4 is just couldn't work out the way I was working out… so I am now exactly the same weight I was a year ago before I started working out. If I lose 5lbs I will still be what my doctors consider thin. I have no doubt that I will lose the 8lbs. It took me 6 months to do it last time so it might take about the same this time but I know I can do it.

    Yes menopause can slow our metabolism and we do tend to gain weight but that doesn't mean it has to be 25 lbs. Yes you should be working out 1 hour a day. As we reach middle age we tend to sit on our asses more so 1 hour is really nothing. We also need to eat smart and portion control. There is no reason to have a major weight problem after menopause if you didn't have one before or don't have some new health issue (like heart issue, bad knees etc) or medication that is causing the problem.

    Chemopause is a SE of chemo. It is not the goal of chemo to shut down the ovaries. Not all women have hormone positive cancers. 

    Of course early menopause is different but it appears many younger women do get their periods back. The closer you are to menopausal age the less likely you are to go out of menopause.

  • 1Athena1
    1Athena1 Member Posts: 672
    edited February 2011
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    Member, now that I am on a proper computer screen, I see the data you point to. 

    Very important to clarify:

    The World Health Organization's data is prevalence data. It shows that the prevalence of cancer as a cause of death relative to all causes of death has declined. And there is no dispute about this, but it doesn't tell us anything about treatment nor survivability, which is at issue here in this thread. 

    With the prevalence of cancer declining in the cohorts studied, we logically infer something else: that death rates for other causes have been rising. That is a valid inference. So all we know is that cancer has gone down and others must have gone up. We do not have a reason and this data cannot provide us with one because there is not enough information. This isn't me talking. Ask any researcher or statistician. He or she will tell you that this information is insufficient to answer the question: has cancer treatment led to lower death rates. 

    So many things can happen that kill more now than they used to. Wars, new epidemics, natural disasters, etc... that is why this data cannot be used.  

    Experts on the topic say that you have to look at what happens only to people who get cancer not to all people. If you get cancer today, versus in 1950 or 1974, do you die just as one would have before? The answer is that death rates have barely budged, I'm afraid.

    Also important: the simple fact that death rates have barely budged is not, by itself, sufficient to prove that cancer treatment has abysmal success rates. It is merely one indicator. A telling one, a vital one, but not the only indicator, and I certainly would never base my statements on it. In conducting my own research, I also looked at individual treatments, etc... But we are talking about the graphs.  

    SEER data and data from the National Center for Health Statistics have the answer. Go to the NYT links I posted earlier on this thread because they explain it all better than I could. I only looked at US prevalence rates but looking at European rates is just as well if you have the right data sets - and I don't know if the WHO collects information from tumor registries. SEER data gathers tumor registries in select cities in the US and looks at the numbers in all sorts of ways. I took an online tutorial, as a matter of fact, and it is fascinating what the numbers can reveal. But, again, I refer you to the NYT news story links because it's all there, including an interactive graph by cancer type showing that death rates have barely budged. 

    So, again, neither raw numbers nor raw prevalence can be used; nor can you extrapolate anything from lower prevalence rates. An easy way to understand this would be by using an extreme example: imagining the impact of World War II in a country like Poland, which lost one in five citizens to the war. Imagine how the prevalence rate for flu deaths and cancer deaths must have plummeted during that time period. A Martian looking at those numbers could well wonder whether a miraculous cure had been found for all of these killers. Of course, we know that isn't true. No miracle cures accounted for the drastic shift in prevalence rates. But if the data had merely been presented just like the WHO data is presented in these graphs, we could speculate endlessly, but we would have no answers. That is why this data does not prove anything about survivability from cancer and therefore cannot be used to make such a case.

    Edited many hours later only to append the following note: SEER = Surveillance, Epidemiology and End Results. Data collected by the National Cancer Institute, which is part of the National Institutes of Health.   

  • Kine
    Kine Member Posts: 10
    edited February 2011
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    1Athena1, regarding the links in your posts; the 1st link refers to cancer in general, not breast cancer. The 2nd link points out that there is no cure, and that the prognosis is bad wheb the cancer has mets. It also says for breast cancer there are treatment pre metastasis that can work.



    So the lesson learned from link 2 as I see it, is that the treatment available is not as good as it should be, and that some treatment will actually work if done in the early stages of breast cancer.



    To me that would translate in to treat stage 3 BC rather aggressivly to avoid metastasis.



    I think everyone can agree that treatment needs to improve - alot, but that does not mean that it is wise to reject available treatment to avoid metastasis.


    Regarding overall survival vs cancer free; many studies and statistics only covers 5 year period. Even if the OS going out of those 5 years is not much changed by treatment, I would very much prefer to exit those 5 years without metastasis, as this will have a positive impact long term. I would focus on the stastics covering 10-15 where available.



  • apple
    apple Member Posts: 1,466
    edited February 2011
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    I've reread wornoutmom's original post.  She is seeking to hear from those who pursued an alternative approach and are doing well.  It is logical to compare women at the same stage she is but I don't see any evidence of that occurring in this thread.

    She doesn't want to hear that side effects may be minimal.. that I for instance have continued to work as a pianist and teacher and apparently thrive in spite of treatments and progression, that many women recover without much scarring or damage.

    She may be searching in the statistics for justification to not pursue treatment. she feels that the harm of treatment will be worse than the cancer.  I can't answer to thriving without treatment, but I can answer to living with stage 4 cancer. 

    My neck swells every morning.  I cough throughout the day.  I fear the cancer will travel up the nodes in my neck, infect my ear and balance and lodge in the brain. I am angry with my darling kids because they have no sense of urgency and are totally messy.  They don't realize thay they are going to be on their own and will have to figure out a way to keep the house clean.  They are so used to me being the super efficient houseslave.  I guess I'll have to hire a housekeeper before I die so things don't go too far south. 

     I am comforted to know that my sister in law, who lost her husband, (my husband's brother) to liver cancer,,, a man who NEVER smoked, drank or indulged in drugs, a man who was an Iron Man triathlete, will make a marvelous wife for my marvelous husband. She is smart, beautiful and delightfully sexual.  I have always regretted that I am not the best mate for my husband because well, I just am not into the bedroom thing, altho I am seriously aware of the importance of  my conjugal duties..   Her daughter will move in and thrive, playing my grand piano. *   I have it all planned.  My niece is so talented.  My husband will see that she is loved.  She has yearned for a daddy all her life having lost hers at 16 months.

    I had  hope for a while.. the oncologists thought they might treat my cancer as locally advanced, but it was too aggressive in spite of 24 chemos, surgery radiation and now 3 hormonals.  In spite of all that, my life is fun..... I play with an ensemble and play the organ around town for funerals.  I worry about my students, if I should send them off before I deteriorate further... spare them the emotional distress of seeing their beloved teacher sicken and die.

    My kids are so cool. I couldn't have been more fortunate.  They don't study as much as they could, but they are bright, funny, principled and wonderful to be around.  They are absolutely beautiful kids.  I hope I live long enough to see them graduate.  I made it to the my daughter's first period.   Son #2 is graduating from grade school and being confirmed in the next several months.  We are trying to figure out career paths.  I appear to be thriving so they don't have the sense of urgency that I do.  I really do hope I'll be around for a decade or more, but I know it is unlikely.  Who'd a thunk? 

    Statistics don't mean sh*t.  Cancer harms one's body far more than effective treatment.  I suspect I have a few more years.  I'm going to try another oral med and then maybe another before I go back on chemo.    Who knows?  Sure wish I had picked up the big guns sooner. 

     Say la vee.

    my boys -

    and my darling girlie

    * check out my paintings.  If I my fingers get screwed up and I can't play the piano, I'll take up painting again.

  • heidihill
    heidihill Member Posts: 1,856
    edited February 2011
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    This is from the Komen website.





    Home > News > Komen News

      







    Circulating Tumor Cells Linked with Recurrence of Early Breast Cancer



    Among women with early breast cancer, the presence of circulating tumor cells (cancer cells in the bloodstream) increased the risk of cancer recurrence and shortened survival. These preliminary results were presented at the 2010 San Antonio Breast Cancer Symposium.





    Among women with metastatic breast cancer (cancer that has spread to other sites in the body), detection of cancer cells in the bloodstream has been linked with shorter time to cancer progression and shorter survival. Less is known about the significance of circulating tumor cells in women with early-stage breast cancer.





    To evaluate the impact of circulating tumor cells among women with early breast cancer, researchers evaluated more than 2,000 patients. The test to detect circulating tumor cells was performed after surgery and before the start of chemotherapy.





    Circulating tumor cells were detected in 21.5% of patients. Women with circulating tumor cells were more likely have node-positive breast cancer than women without circulating tumor cells.

    Compared with women with no circulating tumor cells, women with one to four circulating tumor cells were almost twice as likely to experience cancer recurrence and death.

    The presence of five or more circulating tumor cells was linked with a fourfold increase in recurrence risk and a threefold increase in risk of death.



    These results suggest that detection of circulating tumor cells may provide information about recurrence risk and prognosis among women with early breast cancer. In a prepared statement, the lead researcher on the study noted, “Our study suggests testing [circulating tumor cells] may prove to be important to help individualize therapy for early-stage breast cancer…” Studies to further evaluate the role of circulating tumor cells are underway.





    These results should be reviewed as preliminary by women with breast cancer and their doctors.  Testing for circulating tumor cells is not indicated for women with early stage breast cancer.  Other studies will have to be performed before this approach should be used in routine clinical practice.





    Reference: Rack B, Schindlbeck C, Andergassen U et al. Prognostic relevance of circulating tumor cells in the peripheral blood of primary breast cancer patients. Presented at the 33rd annual San Antonio Breast Cancer Symposium, December 8-12, 2010. Abstract S6-5.



    -----------------



    The CTC test is not approved for non-metastatic cancer, which means one will have to pay out-of-pocket. Also it might not work for everyone as a diagnostic tool.



  • heidihill
    heidihill Member Posts: 1,856
    edited February 2011
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    In case this hasn't been posted yet, here's a blurb about Suzanne Somers.

    http://well.blogs.nytimes.com/2011/02/25/suzanne-somers-cancer-expert/?partner=rss&emc=rss



  • pickle
    pickle Member Posts: 70
    edited February 2011
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    Apple: Great post. Wow piano and painting. I admire talented people. I can't draw a thing and i don't have an ounce of music ability.



    The pictures of your kids are wonderful. Handsome boys and your sweet little girlie must be the "apple" of your eye.

    Wishing you a joyous, peaceful Sunday

    Hugs

    Beth

  • lago
    lago Member Posts: 11,653
    edited February 2011
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    Member The point that Athena makes about understanding the statistics is quite relevant here . One of the reasons the death rates for breast cancer have gone down is not because of the new treatments are cures but that we have more early detection (which includes more DCIS  and LCIS). People may be living longer with breast cancer because the treatment is managed better and newer treatments like Herceptin, ALs, other 3rd generation chemo, etc. are working and in many cases less toxic compared to what they had in the 50's as well to be closer to curable with dianosis of DCIS and LCIS.

    I agree that you can't look at statistics all cancers. IMO that statistic have little meaning to a specific cancer. As we know some cancers have a much better cure rate. Breast cancer doesn't even have a cure.

    There are some general statistics on the Komen site (US only) that might be easier to understand: http://ww5.komen.org/BreastCancer/Statistics.html  

    More US stats here:
     http://www.cancer.org/Research/CancerFactsFigures/BreastCancerFactsFigures/index  

    --------------------------------------------------

    apple  thanks so much for sharing. Great looking family. I don't run into you much on these threads but I do enjoy reading your posts when I come across them. For some reason you avatar cracks me up and makes me smile. I think it reminds me of the orange videos on youtube.

    ---------------------------------------------------

    I too wish that wornoutmom heard from a few stage III HER2+ women that rejected conventional treatment. Yes I do believe they exist because there is always a percentage of folks that don't need further treatment even in stage III. But as we know there are more that live longer with treatment then those who don't. There's always a chance any one of us will fall into that category but the science to day doesn't know who those people are.

    My onc was quite honest with me about that when I first met her. I asked "how do we know this will work" regarding chemo. She said "We don't. We don't even know who that subset is that really doesn't need it. If we did we wouldn't be recommending chemo to them." The stats she showed me indicated that 40 out of 100 women would be alive and NED in 10 years with surgery only.  If I did chemo & ALs I could more than double my odds (to 84%).

  • Yazmin
    Yazmin Member Posts: 218
    edited February 2011
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    Member, you are SOOOOOOOOOO right in saying this (let me cut and past it here again, that's how right you are):

    "........It sometimes amuses me how folks on this board will question each and every treatment except surgical.  Somehow the knife is more acceptable than drugs.  It amazes me, for example, that there isn;t more scrutiny here about oophorectomies, the long term complications from which are far more unknown than the long term effects of chemo.  As long as I remember (and I've been coming to these boards for over 6 years) there has never been an extended discussion like this one about oophorectomies......" 

  • Yazmin
    Yazmin Member Posts: 218
    edited February 2011
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    Apple: your post is both heart wrenching and beautiful. Your kids are great, your paintings are gorgeous and...... you seem to have it all figured out. Good job!

  • Yazmin
    Yazmin Member Posts: 218
    edited February 2011
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    Hi Beeb75:

    When you write:

    "...........You cannot get statistics to say whatever you want. The numbers are what they are, the trick is understanding them correctly and this often requires looking beyond what is presented in a headline, for example, or an internet posting on a forum......"

    .................I want you to be right. With all my heart. Because your being right means that, I, for one, am done with cancer at this point: End-January was my 5-year cancerversary, and I am feeling much healthier than I did when I was 24 years old, thanks to what I call my "dietary excellence" (well, maybe not all the time....Wink). But that's another story.

    I work with a bunch of international economists, and we are CONSTANTLY struggling with "cooked up" statistics coming from third world countries, which make it difficult to evaluate the real health of their economies........... 

    Cancer statistics are regularly "cooked up" as well (probably to justify the utterly insufficient progress in cancer treatment in the last 40-something years). These links are not all about cancer statistics; they are about the problematic and ethics of interpreting statistics: 

    http://www.physics.smu.edu/pseudo/LieStat/ 

    http://www.stat.columbia.edu/~gelman/bag-of-tricks/chap10.pdf 

    http://www.breastcancerchoices.org/rr.html 

  • krista613
    krista613 Member Posts: 10
    edited February 2011
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    Apple- your kids are beautiful and love the paintings! 

  • Beeb75
    Beeb75 Member Posts: 114
    edited February 2011
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    Athena, you have tried to explain your understanding of “overall survival” in a number of different ways on this thread, none of which make sense. My understanding is that overall survival in scientific studies includes death from all causes. It is not a difficult concept.

    Also, I’ve posted links to studies and statistics where “overall survival” is reported by the authors, and shown to be significantly increased when women take chemo or tamoxifen or rads.

    You say that Adjuvant Online shows no increase in overall survival from tamoxifen. That’s just not true. For someone like me, tamoxifen increases overall survival (or “mortality”) at 10-years by 12 percent (12 out of 100 women alive at 10 years because of tamoxifen.) Though I don’t know wornoutmom’s exact diagnosis, someone like her with more positive nodes would have an even greater 10-year-benefit from tamoxifen, on the order of 14 percent (14 out of 100 women alive because of tamoxifen.) Anyone can check this at Adjuvant Online. How can you deny it?

    Regarding the breast cancer death rates in the chart in the New York Times article: that chart stops at 1994, and it already shows the beginning of a downturn in breast cancer death rates. You like SEER data? Great. In 1994, according to that New York Times chart the death rate from breast cancer for white women (I’ll use that, since the number is not reported for all women) is 26.2 per 100,000 women. According to the most recent SEER data, the breast cancer death rate for white women is 23.4 per 100,000 women. (* All these numbers are age and population adjusted, as you prefer.)

    http://seer.cancer.gov/statfacts/html/breast.html

    That may not seem like a lot, but it translates to about 4,500 fewer breast cancer deaths every year. 4,500 lives saved. In 1996, about 44,300 women died of breast cancer. In 2010, SEER estimates about 39,840 women died from it. Even though the size of the U.S. population increases every year (it has doubled since 1950,) and even though there are way more cases of invasive breast cancer (not counting DCIS) diagnosed, the actual number of deaths from breast cancer has been dropping. Why? 

    Because we have more effective treatments that save lives (and the studies quantify exactly how many lives each treatment can save.) 

    Gracie – 4 out of 5 cases of lung cancer in women are attributed to smoking. Sure, there are plenty of women who never smoked who get it, but again, the skyrocketing lung cancer rate among women in recent decades is attributed to the prevalence of smoking in the last century.

     

    Sheila – Interesting thought about treatments merely postponing relapse and death, and one I’ve discussed with my onc and searched for information about. I think that the drop in the absolute number of deaths from breast cancer is the best information we have to “prove” that current treatments do make breast cancer go away forever in some women. Yes, we’re all going to die anyway (from something) but our goal here, I think, is to keep breast cancer from killing us prematurely.

     

    Apple: Beautiful post. Beautiful art.

     

    Yazmin – Thank you for the links about stats. I will read them. Of course statistics can be manipulated to support many statements. That doesn’t mean one can’t find the truth. I’m a journalist, my job is to find the truth. I look at all the information available. I read studies, dissect statistics, speak with experts, have researchers explain their findings to me. I ask questions. I get as close as possible to the truth. Absolute truth is unknowable. It is never what it seems like on the surface. But you can get pretty close to it if you do enough research. And I’ve done a lot of research on breast cancer.

     

     

  • kira1234
    kira1234 Member Posts: 754
    edited February 2011
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    Apple, Your post was beautiful.

    I'm also in the group who feels the treatments do prolong our lives. What I hope we will learn over the next few years is what happens when we go off the estrogen reducing drugs. I have a long way to go till I'm done with them, bu must say it does consern me.

  • Yazmin
    Yazmin Member Posts: 218
    edited February 2011
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    Beeb75, you wrote:

    "........I think that the drop in the absolute number of deaths from breast cancer is the best information we have to “prove” that current treatments do make breast cancer go away forever in some women......."   

    Here, frankly, I just have to go: Say What?Surprised I am truly grateful for much of the information that you have been providing above, Beeb75............But, faced with this statement, I just can't stop shaking my head.

    If you go to the Stage IV Forum, you will find the following posts on Aromatase Inhibitors:

    "I got 3 years out of it"

    "I got 6 months out of it"

    "I got 1 year out of it"

    I have yet to see one that says: "I got 8 years out of it" (I know from Dr. Winer's video at the SABCC that that's about the amount of data now available on Aromatase Inhibitors).

    As for chemo and chemoprevention..... Well, I can think of scores and scores of women alive decades after being diagnosed with breast cancer (see the Inspiring Stories thread). However, those are MOSTLY the people with the less aggressive forms of cancer, though we all know of cases of aggressive cancers that have mysteriously and spontaneously stopped on their own, as well.

    It is a fact that many cancers just stop on their own (and researchers are currently baffled by this phenomenon, which is just barely starting to be EVEN acknowledged by the medical establishment).  

    Those are the tumors that, for whatever reason, were simply not going to progress, even without any treatment, conventional or alternative. And I feel that's one of the points that Research should apply itself to studying.

    Cancer is such a mystery..... 

  • Member_of_the_Club
    Member_of_the_Club Member Posts: 263
    edited February 2011
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    I know a woman with metastatic disease who got 10 years out of tamoxifen.  She's been living with mets for over 20 and after the tamoxifen stopped working she went on an AI, but I don't know for how long.  For the last three years or so it has seemed like she was at the end of her life but then another chemo comes along and she's still here.  She was originally stage III, so she clearly had an aggressive cancer but the treatments have been very effective for her.

  • Beeb75
    Beeb75 Member Posts: 114
    edited February 2011
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    Yazmin,

    The "some women" I was referring to did not have Stage 4 disease.

    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. Their breast cancer was "cured" by the available treatments. These are the deaths that are prevented. 

    If they had not had adjuvant therapy, some of them would have relapsed and progressed to Stage 4 -- at which point the cancer is, for the most part, incurable. Then, they would have eventually died of the disease and been counted among the deaths from breast cancer.

    Make sense? The dropping numbers of deaths from breast cancer are NOT from curing women whose cancers are Stage 4. It is from curing women whose cancers are Stage 1 or 2 or 3. 

    P.S. I use the term "cure" to mean -- the cancer did not return/spread/metastasize and threaten the woman's life. 

  • lago
    lago Member Posts: 11,653
    edited February 2011
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    2 members of BC.O stage IV:

    EnglishMajor has been stable for 2 years on tamoxifen (working on 2 years survivor)

    Marybe  was stable for many years on tamoxifen/ALs  (20+ years survivor)

    I'm sure there are many examples of how tamoxifen/ALs have extended life in many women. 

  • mollyann
    mollyann Member Posts: 148
    edited February 2011
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    Iago,

    Congratulations on 3,600 posts in 7 months. That is a record. I always enjoy hearing from you.

  • lago
    lago Member Posts: 11,653
    edited February 2011
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    Thank you mollyann. I have my servants bring my meals to me and my computer in the bathroom so I can sit on the toilet when I type. I never leave this spot. I also type using more than 2 fingers.

    BTW it's almost 8 months. Average 15-16 posts a day.

    mollyann what on earth is this obsession with me. It's a little creepy and odd.  Tongue out

  • konakat
    konakat Member Posts: 499
    edited February 2011
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    Whenever I stumble onto a post by Lago there's Mollyann right behind either with a snide remark (unskillfully veiled as a compliment) or an outright rude and insulting comment.  I'm getting embarassed for you Mollyann.  Please seek help!

  • DesignerMom
    DesignerMom Member Posts: 730
    edited February 2011
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    lago-  Wow!  3600 posts in 7 months!  Do you ever sleep?

  • Marple
    Marple Member Posts: 10,154
    edited February 2011
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    I don't sleep.........