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Why Im Not Doing Chemo

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Comments

  • voraciousreader
    voraciousreader Member Posts: 3,696
    edited January 2012

    Sweetbean... Your doctor is right. No one knows if after you have received chemo and had chemopause if O/S is beneficial or necessary. Likewise there is discussion about heart risk when you shut down the ovaries in younger women. I was much older at diagnosis and still premenopausal... So shutting down the ovaries wasn't as much of a heart risk as it is for younger sisters.

  • voraciousreader
    voraciousreader Member Posts: 3,696
    edited January 2012

    Nannykat... It is wonderful to hear that you are doing well. Unfortunately, anecdotal experience doesn't pass muster in evidence based medicine. Perhaps from your experience, researchers can design a clinical trial and see how successful your protocol actually is. Furthermore, while you are doing well now, it will take several more years to actually know how really well you are. I applaud you for seeking out treatment that worked for you. I hope you will continue to post in the future and let us know how you are doing.

  • AlaskaAngel
    AlaskaAngel Member Posts: 694
    edited January 2012

    If you have no interest and believe that others shouldn't have the choice to consider therapies such as the one you have chosen (ovarian ablation) by various means, then feel free to tune out. I'm asking if ovarian ablation by surgery is more complete for postmenopausal women than simply being naturally postmenopausal. That isn't a really difficult concept, and is just a natural question, and I don't know why it would be such a threatening question to ask here as to be considered "irrelevant", given that it is the therapy you yourself have chosen as a protective measure.

    A.A.

  • voraciousreader
    voraciousreader Member Posts: 3,696
    edited January 2012

    Your question is irrelevant in a post menopausal HER2 positive situation. If it were a relevant question, researchers would be studying it. Drop the word "threatening" too. Neither I, nor many of us here feel "threatened" by your questions. Instead, personally speaking, IMHO, I find your train of thought absurd.

  • crazy4carrots
    crazy4carrots Member Posts: 624
    edited January 2012

    As Pessa stated:  Adrenal glands produce estrogen, as does adipose (fat) tissue.  Ovarian ablation will not remove all estrogen produced by the body.

    So, that being the case, I'd say "case closed" re ovarian ablation for post-menopausal women.  What, exactly, would be the point? 

  • beesie.is.out-of-office
    beesie.is.out-of-office Member Posts: 1,435
    edited January 2012

    "I'm asking if ovarian ablation by surgery is more complete for postmenopausal women than simply being naturally postmenopausal."

    The answer is a clear and emphatic "NO".  I will not quote the sources; AA, you can look them up for yourself.  It won't take you long to find lots of sources that support the fact that the answer is NO. 

  • AlaskaAngel
    AlaskaAngel Member Posts: 694
    edited January 2012

    1984 article, but I'm not seeing any other studies:

    http://www.athenainstitute.com/sciencelinks/preserveovary.html

  • AlaskaAngel
    AlaskaAngel Member Posts: 694
    edited January 2012

    http://womenshealth.about.com/cs/menopaus1/a/menohowhappn.htm

    "For unknown reasons, the ovaries begin to decline in hormone production during the mid-thirties. In the late forties, the process accelerates and hormones fluctuate more, causing irregular menstrual cycles and unpredictable episodes of heavy bleeding. By the early to mid-fifties, periods finally end altogether. However, estrogen production does not completely stop. The ovaries decrease their output significantly, but still may produce a small amount."

  • beesie.is.out-of-office
    beesie.is.out-of-office Member Posts: 1,435
    edited January 2012

    Eve, we haven't heard from you all day and I am worried about you.  I apologize for my part in the discussions that have taken place all day.  Your thread has been hijacked and although I wasn't the hijacker, I have played a pretty big part.  I should know better than to get involved in these types of discussions!  I hope that today's posts haven't pushed you away.  I know that you were upset after your meeting with the oncologist yesterday and I imagine that the back and forth arguments in this thread today probably didn't do much to make things better.

    Please refer back a couple of pages to my response to your post from last night, the post in which I discuss why tumor size matters in a situation like yours.  I hope what I said in that post makes sense and is helpful to you. 

  • AlaskaAngel
    AlaskaAngel Member Posts: 694
    edited January 2012

    Production of testosterone in postmenopausal women:

    http://jcem.endojournals.org/content/92/8/3040.long

    "Results: Statistically significant gradients were seen between the ovarian venous and peripheral samples for T, A, DHEA, E1, and E2. Postoperative levels of T and E1, but not A, DHEA, or E2, were statistically significantly lower than preoperative levels. A gradient for T between the ovarian venous and peripheral blood was present in four of five women who were menopausal for more than 10 yr.

    Conclusions: The postmenopausal ovary is hormonally active, contributing significantly to the circulating pool of T. Furthermore, this contribution appears to persist in women as long as 10 yr beyond the menopause."

  • suzieq60
    suzieq60 Member Posts: 1,422
    edited January 2012
    AA - ok so I got hormone receptive bc - is that because my ovaries were still producing hormones after 5 years? NO - it's not the reason. I was on HRT as many women my age have been and I think that is what caused it.
  • AlaskaAngel
    AlaskaAngel Member Posts: 694
    edited January 2012

    I know it is popular to not question standard medical dogma, but this forum is for those who are interested in exploring and considering alternative therapies.

    A.A.

  • AlaskaAngel
    AlaskaAngel Member Posts: 694
    edited January 2012

    susieq58,

    HRT is a likely culprit.

    I'm wondering here if squelching postmenopausal ovarian function by oophorectomy would be more effective or as effective for some postmenopausal women than the effect of ovarian dysfunction caused by chemotherapy or ordinary menopause.

    The response sounds like people who are biased in favor of chemotherapy are reluctant to give the question any serious scientific consideration, and are convinced that there is zero ovarian production of hormones for those who are postmenopausal.

    A.A.

  • scuttlers
    scuttlers Member Posts: 149
    edited January 2012

    AAARRRRRGGGGGHHHHHH!!!!

  • orange1
    orange1 Member Posts: 92
    edited January 2012
    From the Oncologist, Volume 26, No. 1  Shows % of time a pathological complete response (complete eradication of tumor) occurs with various treatments in neoadjuvant chemotherapy (chemo given before surgery).  
    This shows that longer chemo given with trastuzumab (generic name for Herceptin) results in complete eradication of tumor 50% of the time.  Yucky treatment - but good result.
  • AlaskaAngel
    AlaskaAngel Member Posts: 694
    edited January 2012

    More good info for evebarry to consider.  It includes whatever effect there is due to cell apoptosis that one would not have without chemotherapy -- but again, chemotherapy probably doesn't affect stem cells.

    I wonder what it would look like if they substituted surgical ovarian ablation for the chemotherapy, plus the monoclonal antibodies -- and although there wouldn't be the cell apoptosis due to chemotherapy, the immune system wouldn't have the adverse chemo effect either.

    A.A.

  • suzieq60
    suzieq60 Member Posts: 1,422
    edited January 2012

    Ovarian Ablation

    Ovarian ablation is a treatment that stops estrogen production from the ovaries. Medications can accomplish ovarian ablation. Destroying the ovaries with surgery or radiation can also shut down estrogen production. (Osteoporosis is one serious side effect of this approach, but several therapies are available to help prevent bone loss.)

    Chemical Ovarian Ablation . Drug treatment to block ovarian production of estrogen is called chemical ovarian ablation. It is often reversible. The primary drugs used are luteinizing hormone-releasing hormone (LHRH) agonists, such as goserelin (Zoladex). (They are also sometimes called GnRH agonists). These drugs block the release of the reproductive hormones LH-RH, therefore stopping ovulation and estrogen production.

    Bilateral Oophorectomy . Bilateral oophorectomy, the surgical removal of both ovaries, is a surgical method of ovarian ablation. It may modestly improve breast cancer survival rates in some premenopausal women whose tumors are hormone receptor-positive. In these women, combining this procedure with tamoxifen may improve results beyond those of standard chemotherapies. Oophorectomy does not benefit women after menopause, and its advantages can be blunted in women who have received adjuvant chemotherapy. The procedure causes sterility.

  • racy
    racy Member Posts: 976
    edited January 2012

    Voracious, does not your treatment plan disprove AA's assertion that that option is not offered to women (where appropriate)?



  • suzieq60
    suzieq60 Member Posts: 1,422
    edited January 2012
    Ovarian ablation
          Another way of blocking the estrogen hormone is to do an ovarian ablation. This is done in pre-menopausal women only because the ovaries of post-menopausal women are not functional. There are different choices for the ovarian ablation. Ovarian ablation can be done surgically, by removing the ovaries.
  • AlaskaAngel
    AlaskaAngel Member Posts: 694
    edited January 2012

    susieq58,

    That is the general conclusion drawn in regard to postmenopausal patients, although I haven't seen the actual study basis for it and it does appear that for some postmenopausal women there is still some ovarian function late in life, so it would be somewhat dependent on individual hormonal production postmenopause.

    I was diagnosed in 2002 when CAFx6 was recommended for me. It appears that oncologists, including mine, should have been aware that the answer to my question "Would ovarian ablation plus tamoxifen be equal to CAFx6?" was YES. Oncologists are supposed to be honest with their responses because they are professionals serving our best interests and working with us cooperatively...... but here is the info from 2001 providing the answer to the question I asked my onc in 2002:

    http://jncimonographs.oxfordjournals.org/content/2001/30/67.full

    This is a comparison done prior to the authorization of trastuzumab for HER2+++ patients, but it is for lymph node positive patients (I was lymph node negative HER2+++, so at similar risk).

    My onc still has a top reputation. I wonder if he still fails to be truthful with patients like me when they ask honest and intelligent questions.

    Some HER2+++ patients are still treated with CEF and H, although TCH or AC+TH is more common I think now. It is hard to know how the TCH or the AC+TH would compare although the taxanes are generally considered more effective for those who are HR negative (at least, according to my onc).

    A.A.

    P.S. It does reasonably raise the question as to how comparable it would be for someone to do ovarian ablation plus H, to current chemotherapy plus H.

  • Hindsfeet
    Hindsfeet Member Posts: 675
    edited January 2012

    It's....just about 12 midnight. I' came home from a long day of work, looked at a few e-mails, and a few pms here and then put down my laptop and slept until 10:30. I have to be up at 6 a.m. to get ready for another long day... for a P.S. appointment at 8 a.m. and be at school all day. After my recent mx, I am glad to get back to somewhat of a normal life. But, life isn't quite normal. I am still tired from surgery, and I have other things in life I have to do besides figure out bc cancer treatment. My energy level is a little zapped right now. It wish I could move on from here because a lot of this has been mentally taxing. I feel pressed especially in regard to treatment and feeling pushed into making a decison right now. The whole breast reconstruction process is enough for the present.

    A year ago I fortunately got on Medicare, so you all know I'm post menapausal. I went through it pretty late. My estrogen level at biopsy was 96+ and a little lower the last path report. My tired mind can't recall exact number. Someone suggested I put progesterone on my breast to control the estrogen problem. I did it a few times which maybe why the estrogen was lower. I hope so. My naturalpath said that adenaline also puts out estrogen....I live on adrenaline so maybe thats my estrogen problem?

    I tried reading through all that you posted here. My tired brain is having a hard time processing it all. I appreciate everyone's imput. I know this is a very hot topic and we all have strong feelings either way. I appreciate for the most part that most here is repectfully discussing the pro's and cons of chemo and cancer treatment. And for those who have a difficult time discussing the alternative approach to cancer treatments or if this thread makes you grrr angry perhaps this is not the thread for you. I would hope we can talk about this all without hard feelings. Like I said, even if I don't always agree, I respect your choices, and appreciate that you are concerned enough to speak your heart.

    Beesie, I need to go back and read everything when I'm a little more rested ... sometime this wkend. I'm really a pretty easy going person. It doesn't bother me to discuss other things here like staging although personally I would love to see a thread somewhere discussing staging as it alone is a topic that is confusing to those who have early stage cancers in regard to treatment options. There are a few matters brought up here that I wonder, What? and Why? 

    Also...many of you "intelligent" minds must have some kind of medical degree. You would just about have to share some of the medical terms and language you write. It is way beyond the common persons understanding.  What you write might be more persuasive if it was all said in layman's terms. Of late, more and more of you are doing just that...muchly appreciated.

  • heidihill
    heidihill Member Posts: 1,858
    edited January 2012

    Hope you have a good rest, Eve.

    I am starting to see AA's point, even as it applies to you, Eve, and not just as a theoretical discussion. The ovaries can continue to produce estrogen even in postmenopausal women. This discussion made me remember a relative of mine who started getting her period again at age 70. For most postmenopausal women ovarian estrogen production would be insignificant, but there are exceptions. The ovaries also continue to produce testosterone which can be converted to estrogen by the body through aromatization. And this is where aromatase inhibitors come in. I would consider doing the AIs on top of herceptin and tykerb. The longer you've been postmenopausal the weaker the side effects are. I know a 70+ woman who's been taking Femara 14 years and is still riding around on her bicycle and doing an exercise class with me.

    edited to add: As for chemo, I think there is a greater risk not doing it, but nobody really knows the answer if you were to have triple therapy of an AI, herceptin and tykerb.

  • racy
    racy Member Posts: 976
    edited January 2012

    I just had a look at Life Math. It does allow you to select ovarian ablation as a treatmemt option and do the calculations accordingly.

  • Kaara
    Kaara Member Posts: 2,101
    edited January 2012

    nannkat:  Congratulations on being your own advocate.  I have found that if you don't you will end up with something that may not be in your best interests.  Thanks for sharing your story.  I was told that when I take my rads I must go off all antioxidants.  I asked why, and the doctor said  we don't really know, but "in theory" we think it's a good idea.  I think after reading your post, I will keep taking them.

  • Kaara
    Kaara Member Posts: 2,101
    edited January 2012

    Eve:  How are you doing today?  Hope you have seen your doctor about that fluid that might still be leaking from your body.  You said you were going back to work yesterday...how did that go?  Please try and not overdo it too soon.  Praying for you and sending you positive energy!

  • apple
    apple Member Posts: 1,466
    edited January 2012

    you know - i teach piano and sometimes students ask questions, the answers of which they will not understand.  I have to best choose how to use our time together wisely to teach them optimally.. after all that is what they pay me for.

    I would absolutely LOVE to eat grapefruit all day long, but it interferes with many treatments and meds.  I was told that altho there wasn't a study covering for instance Keppra and grapefruit, it is best to be wary and avoid (at least in excess) grapefruit. 

    Anyway,  if you google radiation and antioxidants together many articles pop up supporting one 'side' or the other.  One could just pick an article that supports ones mindset, or one could read many articles.

    One's mindset can be as dangerous as a grapefruit - to be obtuse.

    if i had one suggestion to put your tired brain at ease Eve, it would be to avoid reconstruction.. and move on to other decisions.    who needs a boob anyway..

    for me chemo or no chemo is not a pro and con topic.. both options are an option and should not be antithetical.. We need all the tools we can get to survive. 

    I come to this particular forum for options and am always a bit taken aback that I must disagree with chemo to be welcome here,, Sadly that is not an option for me. 

    anyhoo..

  • racy
    racy Member Posts: 976
    edited January 2012

    Apple, you are welcome on any thread, I am sure :-) .

  • Kaara
    Kaara Member Posts: 2,101
    edited January 2012

    Apple:  Yes, I hear you.  I was talking to my boyfriend last night about the more aggressive bc types and told him that if I had one of those I might well be doing chemo because I have learned from reading these threads that as dreaded as it might be to me, it could keep me functioning for a time so that I could continue to live my life.  Now, if it ever got to the point that I felt I had no more QOL...it would be decision time.

    I don't think that the only people who should post on this thread are those who disagree with chemo, but I think that everyone has a right to make their own decision about their own body without being made to feel like they are incompetent.

     Genuine concern for another's welfare is one thing, but I draw the line when the discussion becomes a battle of egos about who's right. 

  • suzieq60
    suzieq60 Member Posts: 1,422
    edited January 2012

    Kaara - believe me all of the pro chemo women are really concerned about Eve. I was in the same situation as her, but with a much smaller cancer and I chose to go the conventional route because I read a lot about it and realised just how serious it is even with negative nodes and no LVI. I only have to read about one pseron with mets who didn't get treatment because their cancer was too small and that's enough for me - no way is it worth the risk.

    Sue

  • voraciousreader
    voraciousreader Member Posts: 3,696
    edited January 2012

    Racy... I pointed out awhile back that women, like myself are now being offered alternatives, when appropriate. I think AA was pleasantly surprised to learn how things have changed since she was treated. Furthermore, I pointed out that with personalized genetic screening, such as the Oncotype DX test for us ER+ HER2 negative gals, we now have more alternatives to chemo. What AA fails to comprehend is that for many years, researchers have been looking for more personalized targeted therapies so that fewer sisters will need chemotherapy. I welcome their discoveries. And, I will never accuse folks who choose chemotherapy as thwarting progress in the new discoveries.



    I am sorry that AA chooses to hijack this thread. We are here to support Eve and every woman, newly diagnosed. This is NOT a place for a theoretical discussion as Beesie pointed out. I strongly suggested she start another thread elsewhere on her obsessional topic. Clearly, the more she posts, it grows more apparent how obessional and unproductive she is to the issue at hand.



    Eve... I sincerely hope that the wise counsel that you are receiving here from Beesie and a few of us begins to resonate with you and will help you make better choices with your doctor. And I will end by reiterating that if your doctor is putting chemo on the table... Then perhaps your other illnesses are not of as great a concern as you perceive them to be. Please think it over more carefully.