Any Naturalists Views On Her2+ treatment??

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  • AlaskaAngel
    AlaskaAngel Member Posts: 1,836
    edited December 2013

    rozem,

    I don't disagree with you or Grey Lady about the recommended standard treatment for HR- young patients.

    Genuine honesty with patients who are questioning standard treatment goes beyond that. The truth is that when it comes to HER2 positive patients the medical research profession has failed to scientifically examine and demonstrate adequately which adjuvant patients benefit from the addition of chemotherapy, based on a vague and misleading concept of what constitutes "doing least harm".

    I am just explaining that based on the lack of adequate scientific investigation for this group of patients, the value of chemotherapy as a cancer cell obliterating treatment versus the value of chemotherapy as ovarian ablation, versus the value of the combination of the two, is uncertain.

    If this person indeed has made up her mind not to do any chemotherapy, it is important to point out that chemotherapy is not just important for killing the still only theoretic last cancer cell, and that part of what chemo does is to increase ovarian ablation. It is important to explain that so that at least she can consider adding some other form of ovarian ablation to trastuzumab if she can find an onc to approve it.

    I understand that it is simpler to just present the solution as being trastuzumab and chemotherapy without further explanation.

  • rozem
    rozem Member Posts: 1,375
    edited December 2013

    AA - she has ER negative disease so ovarian suppression/ablation will not benefit her type of cancer.  Yes the scientific community has not told us WHO will benefit only that there IS a benefit to chemo plus Herceptin - there are many studies on the survival benefit as AS A GROUP.  We have individual benefit (% risk reduction) but who will fall on each side of the statistic is unknown. 

  • AlaskaAngel
    AlaskaAngel Member Posts: 1,836
    edited December 2013


    rozem, I know that is the general conclusion (that hormonal manipulation doesn't benefit those who are ER-) but that too is not absolute. To the degree that it is true, that effect of chemotherapy (loss of ovarian function and all that is involved in that) means throwing those parts of oneself in front of the train without getting any benefit from the damage to ovarian function.

    And although I agree that it makes sense to throw trastuzumab in for HER2 positives, I am personally aware that not receiving it made zero difference for me, even though so many consider it life-saving. When will patients like me be spared that expense and difficulty through adequate research efforts rather than blanket administration "just in case"?

  • ruthbru
    ruthbru Member Posts: 57,235
    edited December 2013

    Alaska, you were (happily) just plain lucky! I certainly agree that more research needs to be done to better tailor treatment. I felt that way about chemo (which I did). Without it there was a 50/50 chance that the cancer had already been taken care of by surgery.....like flipping a coin.....and although, of course it wasn't a guarantee (and I also might have been fine without it), I wanted to give myself the best odds possible never have to go through the whole 'cancer' thing again. I feel the same about buying flood or fire insurance, I buy it but hope I will never have to use it!

  • AlaskaAngel
    AlaskaAngel Member Posts: 1,836
    edited December 2013


    Well, to me that is really sad. We buy more and more costly and difficult treatments because we are talked into believing that someone like me was "just lucky", instead of actively pursuing more accurate, and more definite information. Because I actually was going through treatment at a time when HER2 positive adjuvant patients didn't routinely receive trastuzumab (and it was not yet authorized outside of trials then), I am aware that there were MANY like myself who were "just lucky", not just rare individuals. Now that blanket treatment is the norm, it is commonly assumed that everyone who is HER2 positive absolutely will not survive without it, and those of us who do and could are no longer accurately countable. It is even more true for adjuvant care and chemotherapy. The blanket insurance makes it harder to tell.

  • ruthbru
    ruthbru Member Posts: 57,235
    edited December 2013

    This was from a study done in 2009, listed in the BCO research news.

    "Researchers compared the outcomes of two groups of women. All the women were diagnosed with small (1 cm or smaller), early-stage breast cancer that hadn't spread to lymph nodes. One group of women was diagnosed with HER2-positive cancer and the other group with HER2-negative cancer. None of the women were treated with Herceptin.

    The researchers found:

    • 10% to 23% of women diagnosed with small, HER2-positive cancer had a recurrence within 5 years of diagnosis compared to about 5% of women diagnosed with HER2-negative cancer.
    • Women diagnosed with small, HER2-positive cancer were 5 times more likely to have a metastatic recurrence -- the cancer coming back some place else in the body -- compared to women diagnosed with HER2-negative cancer."

  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited December 2013


    AA,


    It would be nice if the studies and info you seek were available. However, they are not so in discussing this with someone who questions the current recommendations for HER2+ women, the info and studies we wish existed have no bearing on decisions that need to be made here and now.

  • rozem
    rozem Member Posts: 1,375
    edited December 2013


    exbrnxgrl - well said

  • AlaskaAngel
    AlaskaAngel Member Posts: 1,836
    edited December 2013

    kayb, as long as the definition of "harm" stays conveniently vague and supportive of the status quo treatments, the perception is that prescribing the present standard treatment "does less harm". But the disease processes involved with treatment are very poorly tracked, and "harm" is not clearly defined. I do "get" that lives saved in terms of bc are all that count, nothing else matters, but also realize that lives lost due to the same treatment are not acknowledged at all. As we all know and mentally manage to dismiss  immediately, chemotherapy IS carcinogenic. We never ask the question, well, if it is carcinogenic, then why is there no percentage allottted on the predictors for the volume of people who die due to treatment? Or does science just make the blind assumption that none do? Do you see any clear acknowledgement in the predictors showing how many die due to treatment with the regimen being tallied? I don't see any.

  • AlaskaAngel
    AlaskaAngel Member Posts: 1,836
    edited December 2013

    exbrngrl, I know that all of you are presenting points to try to help someone make the hard decision to do treatment that is unpleasant, but popularly considered to be the best we have to offer at this time. I did the ugly treatment myself. You aren't trying to misinform, and your advice could very well make a life or death difference in her outcome. I respect that, and hope she grasps that. 

    I am just not as convinced as you are that continuing to follow the path of the herd will ever lead to anything more than a continuing bias in favor of very minimally justified recommendations and an equally vague concept of doing the least harm.

  • AlaskaAngel
    AlaskaAngel Member Posts: 1,836
    edited December 2013


    ruthbru,

    How many of those in each group received any treatment of any kind?

  • AlaskaAngel
    AlaskaAngel Member Posts: 1,836
    edited December 2013


    rozem, here is another example of questions that are not being asked at time of treatment recommendation, but that are quite appropriate:

    A 50-year old premenopausal woman is recommended to have standard therapy, which then acts to slow the metabolism and highly expedites weight gain that puts the woman at higher risk for recurrence. Where is the careful analysis provided in advance of treatment to this patient in acknowledging this likely increased risk, to help this woman to find the breaking point for risk/benefit for her treatment in terms of metabolic changes and post-treatment weight gain? Where are the calculations for this problem in regard to women who are obese prior to treatment and have even more likelihood for treatment failure due to the increase in metabolic slowdown brought on by treatment?

    From what I see in common practice, that is not factored into the recommendation for treatment, even for a patient who is considered to receive very marginal benefit otherwise with standard treatment. Why not? As long as no one raises the question, the answer will continue to blindly favor standard treatment regardless of predictable weight increase and increased risk due to weight gain.

  • rozem
    rozem Member Posts: 1,375
    edited December 2013


    AA - i think this isn't factored in because ultimately we can do something to help counter weight gain. Yes it is tough, i deal with it each and every day. I have to work twice as hard for half the results i used to get. Plus, menopause slows your metabolism even exclusive of chemo so those gals who have chosen to do tamox/ovarian suppression have the same issues.


    Does chemo slow metabolism further ? im not understanding this since i thought chemo puts you into menopause which slows your metabolism - just earlier you were saying that ovarian suppression is a treatment consideration but both are doing the same thing - slowing metabolism!

  • AlaskaAngel
    AlaskaAngel Member Posts: 1,836
    edited December 2013


    Yep, the added risk should be part of the calculation of risk/benefit for post-treatment weight gain whether one does ovarian ablation or chemotherapy. I was one of those premenopausal marginal benefit 50-year-olds for whom doctors don't bother calculating or presenting the risk/benefit of weight gain, and don't bother mentioning weight gain, Because I was a very trim 50-something at dx, I didn't have a clue that I would gain weight or that despite the pretense that most of us can lose it if we "try" hard enough so it isn't worth including in calculations of risk/benefit, it just ain't so on average. I gained 25 pounds, which took 6 years of intensive struggle to lose, only to have it come back again. All of which, like the loss of gender, was never part of my life.... until.... I did chemo. Since my "benefit" even as a HER2 positive, was marginal to begin with, I do think doing treatment with chemo all in all put me at greater hazard than benefit.

  • AlaskaAngel
    AlaskaAngel Member Posts: 1,836
    edited December 2013

    Targeted treatment (trastuzumab) improved DFS and OS. Which is a very strong indicator that the addition of chemo does very little for HER2 positive bc. However, since "we've always thrown in chemo" since time began, it should be there with trastuzumab "just in case" it provides "synergy".

    And since chemo is carcinogenic in itself, which means chemo can cause cancer, the cancer predictors should include a calculation of percentage for those whose cancers are enhanced by the use of chemotherapy -- but the calculators don't include any estimate of that percentage. ???

  • Beesie
    Beesie Member Posts: 12,240
    edited December 2013


    "I do "get" that lives saved in terms of bc are all that count, nothing else matters, but also realize that lives lost due to the same treatment are not acknowledged at all."


    Not so. Any long-term study that looks at overall mortality (vs. cause-specific mortality) does account for any deaths that might result from the treatment itself. The "lives saved" is a net number, factoring out any lives lost due to the treatment.


    Therefore if a study shows a statistically significant overall survival benefit for one treatment over another (or over a placebo) it means that any effects from the treatment have been factored in and the survival rate due to the treatment is still significant.

  • AlaskaAngel
    AlaskaAngel Member Posts: 1,836
    edited December 2013

    Yes, Beesie. That is why I don't understand why there is no allotted acknowledgement shown by the predictors when estimating treatment efficacy, indicating the volume or percentage of deaths due to treatment.

  • AlaskaAngel
    AlaskaAngel Member Posts: 1,836
    edited December 2013


    Another statement that is often made that seems bizarrely inaccurate to me is when it is emphasized that breast radiation is only for local control and has no relevance to distant mets. I do understand that the rads to the breast are not going to directly affect distant cancer cell distribution at time of radiation, but unless it is completely impossible for any cancer cells in the breast to "escape" and eventually cause mets, then rads does not just act locally, and actually can reduce the likelihood of mets.

    And why is it that the predictors do not acknowledge at all the benefit of rads by asking whether patients have done rads or not? There are patients who refuse rads but do the treatments that are accounted for by the predictors. In effect it seemsto be that the predictors ignore the protective effect of radiation entirely and attribute (thus overestimate) any success to just chemotherapy or hormonal treatment or perhaps trastuzumab.

  • rozem
    rozem Member Posts: 1,375
    edited December 2013


    AA - my RO told me that for every 4 local reccurances that rads prevents it also prevents one distant, so yes it does

  • AlaskaAngel
    AlaskaAngel Member Posts: 1,836
    edited December 2013


    rozem,

    Here is another twist to the story, posted this morning on another forum here, raising another question about the accuracy of predictors and risk/benefit. I do have a hard time posting it, out of concern for any confusion among those presently in treatment and contemplating it:

    But I also am concerned about the prevalence of the mythic quality of the belief that chemo kills "every last cancer cell" in light of the reality of stem cells and the lack of efficacy of chemo on stem cells:

    http://www.cancer.gov/newscenter/cancerresearchnews/2012/CancerStemCells

  • SelenaWolf
    SelenaWolf Member Posts: 1,724
    edited December 2013

    The belief that chemo kills every last cancer cell is, unfortunately, an urban myth.  No respectable oncologist will ever tell you that you need chemo to kill "every last cancer cell" because that is not the purpose of chemo.  The primary treatment for cancer is surgery.  Without surgery, you will, eventually, die.  With surgery, you have a 50-50 chance of surviving long term.  Chemotherapy (like radiation and hormonal therapy) are adjuvent therapies; therapies done in addition to surgery.  The surgery will; hopefully, save your life.  Adjuvent therapy was never intended to take the place of surgery, i.e. be a life-saving measure; it was developed to reduce risk of recurrence after surgery had been performed.

    I think this perception of chemotherapy being able to "kill every last cancer cell" leads to the belief that, if a person has chemotherapy and suffers a relapse that the chemo "didn't work".  But, likely, it did work; without the chemo the patient would have died much sooner, with the chemo, the patient may have enjoyed several disease-free years that wouldn't have happened without the chemo.  Chemotherapy's prime function is to increase disease-free survival not cure cancer.  So far, nothing cures cancer.

    We, as a society, have to come to terms with this misconception about chemotherapy, otherwise, we will never be able to accept the realities- and limitations of chemotherapy.  To expect it to do something it was never intended to do will always lead to people trying dangerous alternatives - or maybe nothing at all - in the belief that "chemotherapy doesn't work".  Chemotherapy must be kept in perspective, so that we can recognize fully it's true merit.

  • SelenaWolf
    SelenaWolf Member Posts: 1,724
    edited December 2013

    That is so very true.

  • ruthbru
    ruthbru Member Posts: 57,235
    edited December 2013
  • Sassa
    Sassa Member Posts: 1,588
    edited December 2013

    Chonkala,

    I will be watching for you on the Stage IV forum.  ER/PR-, HER2+, it shouldn't be long without any chemo or Herceptin.

  • kayfh
    kayfh Member Posts: 790
    edited December 2013


    Oh Sassa. That was harsh. Really harsh. You might think that but writing it? Kay

  • SelenaWolf
    SelenaWolf Member Posts: 1,724
    edited December 2013

    Sassa... that was uncalled for.


     

  • ruthbru
    ruthbru Member Posts: 57,235
    edited December 2013

    Remember we are here to help one another. I think the seriousness of the diagnosis can be discussed without being cruel.

  • camillegal
    camillegal Member Posts: 16,882
    edited December 2013

    Ladies--I think Chonkala has stopped reading anyway and no matter what studies they have had there are no rules to cancer--otherwise there would be a cure. Whatever decision that is made just do it with a clear mind and an open attitude and good Luck.

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