NO Chemo

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  • Mithel
    Mithel Member Posts: 15
    edited May 2006
    Conventional therapy vs other therapy is a tough decision.

    I think part of the problem is that there are too many "quacks" on both sides. I've read about truly absurd "alternative" therapies. And in fact I'd probably say MOST of them are idiotic, unscientific ideas. But there are known "alternatives" to chemotherapy and radiation that have been scientifically studied and shown more effective than chemo or radiation for both quality of life and survivability.

    Given that Chemotherapy and radiation have been around for over fifty years and the "war on breast cancer" has been lost so far (using conventional therapy the mortality rate has actually increased when you look at age adjusted statistics) it's sure hard to believe in such a toxic and destructive approach.

    What we really need is more scientific publicity of the natural therapies that have been proven to be effective.
  • 2up
    2up Member Posts: 1,358
    edited May 2006

    just curious...........which natural "proven" therapies would these be? i'd love to know more about them!

  • ravdeb
    ravdeb Member Posts: 3,116
    edited May 2006
    I have just got to add my feelings here...this post started out with somebody who had clear margins, no node involvement and grade 3 tumor. That's all I remember that was said. I have those characteristics in my tumor as well as being hormone neg and her2 neg.

    I did chemo and am now doing radiation. I hate it all. But, I also hate the fact that I have cancer. I know a woman who had breast cancer and went the alternative route and well...she died. I have a friend now who has breast cancer and has refused conventional methods and we are hoping she will live. It's a gamble. It's a gamble to take the chemo and rads. I got very sick on the chemo and couldn't finish it all. But, I do believe that because studies have shown that conventional treatments do prolong and even save lives, it is my responsibility to do all that I can to try to save my life. If I've done it all, and the cancer wins..then at least I know that I've done the best that I could have done.

    there are lots of stories of women who survived without chemo and rads but we don't know all the details of their cancer so it proves nothing. I have a book written by a woman who had breast cancer some 10 years ago and when she got too sick on the chemo, she stopped and went on an alternative plan and she's still living and dancing with NED. Maybe the chemo that she got in her body was enough? Maybe she had a non-invasive type of tumor? I don't know. The fact is that she doesn't SAY what she had.

    There are too many facts pointing to chemo and rads as ways to delay growth of a tumor, shrink a tumor or get rid of stray cancer cells that may have lingered after surgery. I am going for this method until otherwise proven...
    ravdeb
  • Mithel
    Mithel Member Posts: 15
    edited May 2006
    First of all, I'd like to keep with the spirit of these message boards that everything posted should be considered as support and encouragement for those dealing with cancer. Nothing is intended as criticism or an attack on someone else's choices. I do feel very strongly that cancer therapy is an individual choice (and a violently emotional one at that!).

    Next let's be really careful what we mean by the term "proven" (and I was too careless in my first usage of that word). Nothing about cancer therapies is solidly proven and that goes for chemotherapy and radiation too. All we have are studies and statistics. Nobody has come up with a 100% guaranteed cure.

    Why? Partly because there are too many factors. Individuals may not follow a regime properly. Individuals may do other things that the study or trial was not aware of. And each individual is genetically different. We aren't thousands of lab rats bred with nearly identical genetics and carefully tested and controlled. So there will always be some "unexplained" results.

    shel38, I'm going to assume your asking about these other "therapies" is an honest interest and not a provocation to debate conventional vs alternative.

    Since my wife was diagnosed with breast cancer, I've started taking college courses on molecular biology, reading textbooks on cancer theory and treatments and just about everything else I can find.

    This is a nightmare of a job! Both sides (alternative vs conventional) publish "propaganda" (manipulated statistics, quack concepts, etc). It's very difficult to isolate "facts" that you can trust. And I can't say that any one thing has completely earned my trust yet.

    What I do is try to find some of the more promising concepts and therapies and then chase them down with "official" sources like the NIH (National Institute of Health) or FDA documents.

    I'd also like to suggest that it might be better to term many things as "factors" not "therapies".

    Some "therapies" that I've found, that have scientific evidence to back up the claims are:
    Anti-oxidants (vitamin C, beta carotene, selenium, Green Tea)
    Proteolytic Enzymes
    IGF-1 (high levels can be bad)
    Exercise

    Note: there are also some poorly designed studies that "scientifically" contradict other studies so everything is very much debatable.
  • Beesie
    Beesie Member Posts: 12,240
    edited May 2006
    Quote:

    Nothing about cancer therapies is solidly proven and that goes for chemotherapy and radiation too. All we have are studies and statistics. Nobody has come up with a 100% guaranteed cure.




    It's true that there is no 100% cure for cancer. However it's not true that none of the cancer therapies have been proven. Studies and statistics are real. Chemotherapy and radiation have been proven in many studies to reduce the recurrance of cancer. This is not to say, however, that these therapies will benefit everyone. The statistics don't suggest that 100% of people who take chemo or get radiation will avoid a recurrance. But the statistics do say that a large percent of people who take chemo or radiation will benefit. The statistics can even tell you, based on the specifics of the individual cancer, who is most likely to benefit. Chemo and radiation aren't for everyone; no one suggests that they are. Both have proven negative side effects that must be taken into consideration. But to suggest that the benefits of chemo and radiation are unproven is simply untrue.

    A properly conducted research study is reliable. It involves one group taking a particular therapy and another group not taking that therapy. The individuals in the two groups are as closely matched as possible, in terms of age, health factors and any other relevant variables. Use of the therapy is monitored to ensure that the regime is followed correctly. When the results of a properly conducted research study show a statistically significant difference, this is real.

    I'm not suggesting that all studies are valid; in some cases sample sizes are too small and in some cases proper protocol is not followed. Some research is simply poorly done. But to suggest that there are no proven cancer therapies is incorrect. To suggest that after all these years and all these studies that chemo and radiation have not been proven is a disservice to all the women (and men) who have taken these treatments.
  • Mithel
    Mithel Member Posts: 15
    edited May 2006
    The common misconception though is that chemotherapy has a higher rate of success than it actually has.

    Single example: Using Adjuvant Online (which doctors use to predict outcome): Female mid 40s, tumor between 1.1 and 2.0 cm and no nodes involved results in CMF chemo success rate of 30% (ten year survival rate).
  • Beesie
    Beesie Member Posts: 12,240
    edited May 2006
    Ah, that's a very different point. In both of your previous posts in this thread you said that chemo hasn't been proven and you implied that it doesn't work. Chemo has been proven and it does work. On one government site I read that there have been over 400 studies completed on the value of chemo, just for breast cancer patients alone.

    Understanding the real benefit from chemo is very different than saying that it hasn't been proven to work. I don't disagree that there may be a misconception that chemo is more effective than it actually is. However the data you provided is misleading. I wouldn't want anyone to interpret your data as saying that there is only a 30% survival rate after 10 years with chemo.

    Here's some of the 10-year survival data from the Komen site:

    Women under age 50, small tumor, no lymph node involvement:
    Without chemo 90.0%
    With chemo 92.6%
    % Increase in survival: 2.9%

    Women under age 50, large tumor, no lymph node involvement:
    Without chemo 71.2%
    With chemo 78.3%
    % Increase in survival 10.0%

    Women under age 50, large tumor, positive lymph nodes:
    Without chemo 41.8%
    With chemo 53.3%
    % Increase in survival: 27.5%

    This clearly shows that chemo is very effective for women with more advanced BC, whereas for women with early stage BC, the lower benefit needs to be weighed against the risks and side effects. This is why chemo is not recommended for everyone. But for many women, it will be a life-saver. There is no similar proof that any non-conventional treatment will 'cure' BC. That said, I'm sure that most BC patients and doctors would agree that a healthy diet can't hurt.
  • Mithel
    Mithel Member Posts: 15
    edited May 2006
    Bessie, excellent clarification. It also demonstrates how statistics can be very tricky.

    Adjuvant online usually gives a 2% death to "other causes" so if you take your last example and say that with no further treatment (surgery only) there is a 56% chance of death from cancer and that is decreased by roughly 12% due to chemo that gives an effectiveness of chemo of roughly 21.4% (pardon me if I've made a mistake on this quick math).

    In any case I think we agree, my point is that no studies have shown chemo being more than about 50% effective. And for women with a very high rate of survival the absolute benefit becomes so small that doctors don't always advise chemo. This is why it can be a very difficult decision. And I've read accounts of women that felt betrayed because they thought chemo meant a near 100% "cure".

    Thanks again for the excellent clarification.
  • Beesie
    Beesie Member Posts: 12,240
    edited May 2006
    Mithel, we don't agree. I believe that chemo can be very effective; you don't. The data shows that chemo increases the survival rate for women with late stage BC by 27%. As for the adjustment that you made to the statistics, remember that if you're going to increase the survival rate for the non-chemo patients by 2%, you have to make the same adjustment to the survival rate for the chemo patients. So we're back to the statistics that I pulled from the Komen site.

    The only thing that we agree on is that chemo is not for everyone and I don't think this was ever up for debate. As a general rule, chemo is not recommended for patients with a tumor of less than 1cm, unless there are other factors that indicate that chemo might be beneficial. Personally, I have early stage BC and chemo was not recommended for me.

    One last point. You are not a BC patient. Your wife is. The women on this site are - this is a discussion board for women with BC. May I request a bit more sensitivity? As a woman with BC, I do not want to hear about the "chance of death from cancer". I want to hear about the survival rate, and I want to discuss what can be done to improve the survival rate. Your posting is the first time that I've ever seen anyone refer to the "chance of death". As patients, we use this board to discuss the various treatments and get opinions about their value in our own treatment programs. Rarely however do I see anyone questioning the overall value of an established treatment, as you've done with chemo and radiation. Many women reading your comments are currently taking chemo or radiation. I'm sure that you were not intentionally being insensitive with your comments, but I think it shows that you do not have the same personal and emotional involvement and stake as a cancer patient.
  • Mithel
    Mithel Member Posts: 15
    edited May 2006
    No insensitivity was intended.

    I do object to your saying I don't have the same "personal and emotional involvement". My wife is my life. Without her, everything else is meaningless. My wife's doctor flat out told her that she had a 50% chance of dying (and I was sitting right next to her). This induces fear into the patient. This board is about hope, exploring options, sharing experiences and information.

    For those that have chosen chemotherapy and radiation we have all the best wishes for a successful outcome. For those that wish to explore other options we should be just as supportive.
  • jpsgirl96
    jpsgirl96 Member Posts: 240
    edited May 2006
    Just to weigh in for others reading the thread. I checked adjuvant online for a 45 year old woman, Grade II tumor, node negative, tumor between 1.1 and 2 centimeters, minor health problems. If estrogen negative, 83.9 are alive in 10 years, with chemo adding 3.9 for a total of 87.8; deaths from other causes are 2.2. If Estrogen positive, the benefit of hormone therapy is +2.4, chemo +2.3, total net benefit (because these are not additive) is 4.0. These ARE difficult cases for deciding about chemo, vs. us node positive folks, but IN NO WAY does adjuvantonline give rates of death in the ranges quoted earlier. And, they are more positive than the ACS numbers because the are more 'forward' looking based on current treatments; when "third generation" regimens like TAC and A/C+T dose dense are used, the chemo benefits are greater.
    Let me say I have been VERY cautious about mentioning adjuvantonline here because it is really meant to be a doctor/patient tool, but I couldn't let the incorrect info stand.
    Leigh
  • Mithel
    Mithel Member Posts: 15
    edited May 2006
    I would suggest any further discussion of the relative value of chemo be moved to the "debate it" forum.

    My stance is that we should support and encourage those who have chosen to not undergo chemotherapy.

    The technical issues should be debated somewhere else.
  • boston91
    boston91 Member Posts: 14
    edited May 2006

    Post deleted by boston91

  • Mithel
    Mithel Member Posts: 15
    edited May 2006
    My wife is active on these boards (it's how I found out about these boards). I don't wish anyone's reaction to my comments however to reflect on her. This is her decision and she is gathering input from her doctors, the people here (she really likes this board) and of course myself.

    I was afraid of this. Cancer is an emotional topic. Because the overwhelming majority of people here have chosen conventional therapy this is actually a somewhat hostile environment for discussing research and facts. I have no desire to judge anyone and the choices they have made (these are terrifying choices that are life and death decisions). I'm going to try to restrict my comments to the "Debate It" and "Research News" topics. I was trying to only post some encouragement for those that expressed doubts or concerns over conventional treatments. There is hard evidence that other choices may be appropriate and I don't think they should be intimidated or swayed by the majority who have chosen conventional therapies. I think some have reached out for encouragement that their decision to not choose a conventional treatment was not "crazy". We should be supportive of them no matter what our opinions are.
  • boston91
    boston91 Member Posts: 14
    edited May 2006

    Post deleted by boston91

  • Mithel
    Mithel Member Posts: 15
    edited May 2006
    If it helps you my wife is in her mid 40s ER+, HER2+, sentinel lymph node involved and the tumor removed (clean margins) of largest dimension slightly larger than 2 cm.

    I don't think I've been "preaching". I really was just pointing out that chemo's success rate is lower than many people believe. And if you do believe nutritional therapies work there are others out there sharing the same belief.
  • Anonymous
    Anonymous Member Posts: 1,376
    edited May 2006
    Interesting stuff. I cant imagine being node positive and not considering chemo. People have been trying alternative treatments for cancer for years. Being in health care for 35 years, I have stories upon stories of trends and alternatie treatments - none of which have worked!

    Did I want chemo? No! Was chemo hard? Yes. Do I feel I am cured? Only time will tell.

    But lets not scare new people. Chemo is your first line of defence against this awful illness. And I am sure soon, there will be newer treatments that are not as toxic, but certainly not considered alternative therapy.

    I fear my cancer has come back almost everyday. I think I would be a basket case if I hadnt of gone through chemo. At least I know in my heart I put up the best fight I had.

    Nickii
  • belleroz
    belleroz Member Posts: 3
    edited July 2006

    The first diagnosis of bc is SO overwhelming. With so much information coming at you so fast and furious, so many decisions to make or not to make in a very short frame of time, confusion, research, family/friends opinions, a busy life....it's ALOT! I think at the end of the day, the best question ultimately to ask ourselves is, "If I choose this (whatever it is, lumpectomy vs. mastectomy, chemo, radiation, hormones, hyst/ooph) or if I choose not, and I have a recurrence, will I have regrets?" Everyone has different opinions about quality of life issues, personal belief systems, etc. We all know that the first round of bc treatment is our best shot at the beast. The benefits of the recommended treatments are clearly proven to save lives. SO if you can ponder and answer that question honestly to yourself, do your research and make a well informed decision for yourself, then you shouldn't feel obliged to answer to anyone else. Your body, your life. Lori

  • Anonymous
    Anonymous Member Posts: 1,376
    edited July 2006
    Lori: The bottom line is - Once you make your decision, then run with it and don't look back.

    NuttyNurseNicki
  • slanderson
    slanderson Member Posts: 152
    edited July 2006
    I think that it's worth mentioning with regard to chemo, that first chance is best chance. The problem with regretting later is that it MIGHT be too late, since chemo can only kill so many cancer cells per treatment. So the fewer cancer cells at the time, so much the better. When I read some of these posts at the beginning of this thread, it sounds like the thinking is well if it recurs, I can always do chemo later, which is true, but it will be a worse situation if it has metasticized(sp).

    Just my opinion.

    Shannon
  • lapaz1948
    lapaz1948 Member Posts: 1
    edited July 2006
    Hello, I'm new to this board. In Feb, at age 57, I was dx with stage IIa bc. Underwent a lumpectomy. Sentinel lymph node showed .15cm metastasis. Oncologist said that in many circles, this was considered equal to no lymph node involvement. Therefore, she was comfortable with no chemo, if I so chose. After weighing the facts that chemo would not appreciably increase my survival stats (but might leave me with some nasty side effects), I chose to forego chemo.

    When I received my dx, I poured over many, many books and resourceful websites, both conventional and alternative. (Had I not had a dear friend who went the alternative route after lumpectomy in Mar 05, I would probably have not given alternative methods a second thought. She went that route after 3 women in her neighborhood were dx in the past 5 years, rec'd the full, prescribed conventional treatment, and still had recurrences. Two of them have died and the 3rd is terminal.)

    My own intense study has centered on the selective induction of natural cell death (apoptosis) and the p53 gene. My foundational source was PubMed website. It gives abstracts of articles published in respected conventional medical journals, etc. (This site is where your oncologist is likely to go first for HIS/HER information!)

    It's been 3 weeks since my last radiation treatment. Everyone at the cancer care center was wonderful. I had very few sides effects, none serious or even annoying...

    Some have alluded to the fact that cancer is a very private, very individual experience... I believe decisions SHOULD NOT BE RUSHED, SHOULD BE INFORMED and, if you're religious, made after a lot of prayer. I agree with Mithel that both sides - conventional and alternative - put 'spin' on data and information extracted should be thoughtfully weighed. (How fortunate is Mithel's wife to have a spouse who would go to the lengths he did in support of her! Time is frequently of the essence with a bc dx and if you're the one with the dx, it's difficult to be clear-headed enough to amass the info, evaluate it and make an informed decision within a relatively small window of time! What a blessing it is to have such a supportive spouse! And yes, I did also.)

    As for me, I choose an alternative route instead of hormonal therapy. Good luck to all of you and my prayers are with you!
  • Anonymous
    Anonymous Member Posts: 1,376
    edited July 2006
    Like I said. Once you make the decision. Run with it and dont look back.

    Treatment is a personal choice. I have experienced the opposite of 22roses. Have known too many women who did not go with the conventional route and they are no longer here to talk about their treatment choices.

    Good luck to everyone

    NuttyNurseNicki
  • MelanieTaber
    MelanieTaber Member Posts: 1
    edited July 2006
    march 2004 had my left side masectomy..no rads no chemo..I had beginning stage in 2 areas first lumpectomy then had to take it off because of 2nd area...nodes were clean...my cancer was court at a very early stage...then went for expander to make new breast(reconstruction) picked the wrong ps with out knowing but stayed because no other ps would continue after starting with other ps.....big mess because the ps was a greedy Dr. that did not understand what breast cancer was all about who knows maybe he hated woman.....okay Im here and after having my reconstruction done over i am well educated......Im here for anyone that needs me!!!!!!! you can email me also..

    Melanie
    redid reconstruction june14th 2006 yaaaaaa with a fabulous Dr at cleveland clinic I adore my new ps Dr Samson
  • Roxwooood
    Roxwooood Member Posts: 102
    edited August 2006
    Bessie, I just saw this post you made with the statistics on effectiveness of chemo. I would really appreciate a link to these stats, cuz I don't fit into any of these catagories, and would like to find my own. I had a very small tumor with positive nodes, leave it to me to be different! Thanks again for this post, much appreciated!

    Rachel
  • Beesie
    Beesie Member Posts: 12,240
    edited August 2006
    Rachel,

    Here's the link to the data that I quoted in my earlier post:

    http://www.komen.org/intradoc-cgi/idc_cgi_isapi.dll?IdcService=SS_GET_PAGE&ssDocName=3-8-1-31

    And here's a link to an earlier page on the same website. This page lists all the different research results that the Komen site has available. Hopefully you can find something that relates to your situation:

    http://www.komen.org/intradoc-cgi/idc_cg...3-8-1#diagnosis
  • Roxwooood
    Roxwooood Member Posts: 102
    edited August 2006
    Thanks again Bessie! I know we're more than a number, but sometimes it's reassuring to see numbers that say what we'd like to hear. I ignore the ones I don't like.
  • mkl48
    mkl48 Member Posts: 350
    edited August 2006

    Some of these studies on Korman are rather old. I wonder if stage 3 er+ has enough of a gain- 3.? improvement of survival over the risks in older women -60+ for cardiac effects. Can you "subtract the risk of cardiac from the rather small 3% improved survial? Beth

  • Beesie
    Beesie Member Posts: 12,240
    edited August 2006
    Beth,

    The Komen site is very up-to-date, so if they have old studies included in their research section, I'm guessing that it's because it's the best or only study available, and the study is still relevant to the way things are done today.

    As for whether the improvement of 3pts. is worth the risk, that's the million dollar question that we each have to ask about our treatments. I would recommend that while you can use the 3 pt. improvement as a guide, you should find out from your oncologist exactly how much benefit he or she thinks you would get, and how this compares to the risks. Research studies provide good general guidelines, but treatment decisions have to be personalized. We each have individual factors - our pathology and our personal & family history - that impact our risk, our likelihood of benefiting from a particular treatment, and our susceptibility to negative side effects.
  • mkl48
    mkl48 Member Posts: 350
    edited August 2006
    Bessie,
    The truth is that your onc just doesn't know. He uses the same stats. The new onco test is really only for stage 1-2. Invasive 3est+ her- is really just a flip of the coin. I would like more info from the reader who is interested in P53. I would like to think we are on the brink of major changes in cancer therapy, but if you look at the history of AI's and even Taxol, these have been used for many years. Much has been done for very early node-neg bc. Much less for higher grades and stages in terms of how to prevent progression to mets.
  • ladyleen4
    ladyleen4 Member Posts: 72
    edited September 2006
    Hi
    I had a mastectomy in 97, DCIS, neg nodes and was told by the oncologist that he didn't feel any further therapy was called for. I've had two close calls, they both turned out benign, but I still worry and wait. How are bone mets diagnosed?
    My mom was just diagnosed with stage IIIA with bone mets, they think. She hasn't had any bone pain, but they saw some hot spots on her bone scan. They've done a bone scan, three mris, two PET scans, and they tried to do a bone marrow biopsy but the dr said her bones were so hard he couldn't penetrate! is that a good thing?
    Whew, been hard because she is in another state.

    Thanks
    eileen

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