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Does anyone refuse hormone therapy altogether?

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  • Kaneli
    Kaneli Member Posts: 65
    edited August 2016
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    Bethanygb1, My MO pretty much said it's that if you've had a lumpectomy, and rads, (no chemo, so I'm not sure about that) and are ER receptor+ , it's standard to put you on something to stop making estrogen , or by blocking it. Like I said, one size fit's all. Anyway, from there you have Tamoxifen, which is often prescribed for pre and post menopausal women. I was not given that because it is linked with development of blood clots. I had a deep vein thrombosis years ago after knee surgery, so he decided to give me one of the other classes of hormone therapy, which are called aromatase inhibitors. They are for post menopausal women only and don't have the same link to blood clots as tamoxifen does.... BUT, AIs are linked to bone thinning, osteoporosis, etc. So.....pick your poison! Honestly, that's as much as I know about how they decide what to put you on. My MO did say that he started me on anastrozole (it is generic aromasin, I think) because it did not cost me anything with my insurance plan....so that was nice :) But It caused me unpleasant SEs so now I'm on letrozole, (generic femara, I think) which is also free, but the jury's still out on this one. I'll give it a bit more time before I decide to stop, but it's definitely a possibility. I figure if I give it a fair try, I will not wonder later what would have been without even giving it a whirl. So there you have it....my limited knowledge on all of this! I will say that I am doing a lot of things differently now....more exercise, losing weight, lots of green tea, daily turmeric, vitamin D3, and I have switched to hormone/antibiotic free products in the meats and dairy I select, and more organic products. Can't hurt, right? Still drink my wine though! :)Anyway, good luck to you and to all of us here.

  • Girl53
    Girl53 Member Posts: 41
    edited August 2016
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    Farmerlucy: How are you? I haven't posted much in a while until a few days ago re: some afib I had two weeks ago. In your post above, did you mean that many women experience PTSD/anxiety symptoms after treatment ends?

    Wow, am I having anxiety. I feel very aware of heartbeat, on and off, and my intestines are funny; am fearful and catastrophizing; getting upset when serious illness is mentioned (my neighbor told me today her husband has just been dx'd with pancreatic cancer, and I was upset all day), etc. Is this fairly normal after being treated for BC? I feel like I'm in a state of existential fear and "physical" anxiety symptoms. I had read about this but thought that the "regular" fear and sadness I had during treatment were "it." This feels like a new ballgame.

    I don't know whether there's any way to know whether my afib (which might be occasional, or turn into something else) was caused by the chest radiation or not, and/or whether the anastrozole/very low estrogen can help trigger anxiety and its physical symptoms.

    I have a history of serious emotional trauma in childhood, and had high anxiety during the 14 years that I battled, with my wonderful late husband, his brain tumor (he passed away 11 years ago, and I am happily remarried). I feel "soaked" in worry right now. I am seeing a counselor, and for quite a while now have been trying to taper off the antidepressant a doctor put me on years ago during my husband's ordeal. Maybe this is not such a great time to do that? LOL.

    Whew. This situation has challenges that I hadn't dreamed of.

  • Yaniza
    Yaniza Member Posts: 83
    edited August 2016
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    I refused hormone treatment. My breast cancer was receptive to estrogen. I listened to the reasoning and decided that an increased risk of uterine cancer along with the attendant side effects from the drug was not worth it.

    A clean diet with care taken to avoid soy and other sources of estrogen exposures made more sense to me. Even the hops added to beer is a source... good thing I'm not a fan.

  • farmerlucy
    farmerlucy Member Posts: 596
    edited September 2016
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    Hi girl53 - I'm doing great. Expecting a new granddaughter any day now. Gee - with all you've through I think you are a prime candidate for the PTSD-like symptoms many of us experience. The anxiety is terrible. I had panic attacks for over a year. That was terrible. Yeah - now may not be the best time to get off your antidepressant. I'm on 75mg of Effexor, and I really like it. It sounds to me that all the anxiety you are experiencing is pretty normal.

    Here is a link to the BCO main pages and an article re:PTSD-like symptoms

    http://www.breastcancer.org/research-news/many-wom...

  • fleur-de-lis
    fleur-de-lis Member Posts: 13
    edited September 2016
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    rather late to the party here, but I am going to come out and admit that I take 2k of Glumetza every darn day, rain or shine, since my run in with a rather large, fast growing Phyllodes tumor back in 2009....and it was recommended by my MO at M.D Anderson. That 9CM monster had absolutely no, none, not a one ER or PR receptors...but tested positive for AR and IGF-1 receptors. I contended with reactive hypoglycemia since my early twenties, which later led to Insulin resistance and a bout of PCOS. At 5'11, I have never weighed over 140 lbs, and exercise and sports have been a way of life for me...love going to the gym! My diet is good, no sugar, except here and there, like b- day cake for the recent 9/4 passing into senior citizen hood at age 55......well, at least by AARP measurements. I actually like eating Paleo, and feel my best eating a good amount of protein and plenty of greens....refined carbs actually make me tired and promote a sick feeling afterwards...intolerances to many GMO's in refined carbs like breads and pastas and such. Actually tested, and am NOT Celiac, just.don't. Like. Bread.

    There are many well respected medical researchers who feel that "certain cancers" are actually triggered by metabolic disorders...I.E, the dysregulation of insulin sets up a chain of events which "could "promote an environment in which cancers can grow via the use of glucose as a fuel source. This is not the only pathway of which cancer promotes it'self, but it is one of the pathways that is within our ability to control and manipulate. Other triggers to oncogenes could/ would be environmental exposures and stealth pathogens, such as EBV, and Mycoplasmas, to name a few. I say "could/would because many oncogenes are "currently undiscovered" at this time. Genetics is in it's infancy regarding disease.

    the discussion here would be time consuming, and this simply does not pertain to ALL cancers, but diet and exercise do figure into the equation. Especially in hormonal driven cancers, as insulin dysregulation greatly affects hormonal balance and pathway clearance. Insulin is a steroidal hormone, not unlike ER, PR, and AR steroidal hormones implicated in breast cancer growth. Insulin is one of the most powerful hormones in our bodies, so don't discount the importance of this in cancer.

    As an interesting note, I stumbled upon a blog/website ( UK based) where the founder/ mapper of the human genome, no other than Dr James Watson, discusses his use of Metformin for cancer prevention. Ithink it stated that he used "around the 1,800 mg dosage" , which stated was different than what was being used in the trials.

    The Metformin studies, I believe, are finished around 2019, so we should hear if the research pans out, or not.

    This post is in response to the "sugar fuels cancer" posting(s) a few pages back.

    I am aware that the neoplasms that I am dealing with are not the average E+ P driven cancers which are the mainstream of this forum, but I do feel strongly that we will find Insulin regulation to be "very important" regarding cancer in the future

  • Sara536
    Sara536 Member Posts: 5,937
    edited September 2016
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    I haven't heard anyone mention actually being tested for estrogen level. I am still recovering from 4 days of Anastrozole and think I will concentrate on other ways to lower estrogen, but is it possible to measure it to see how I'm doing?

  • Jennie93
    Jennie93 Member Posts: 263
    edited September 2016
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    The only time they test estrogen levels is when they are checking (estrogen and other things) to see if you are truly in menopause yet. So, it must not be of any use to see if the meds are working.



  • Jennie93
    Jennie93 Member Posts: 263
    edited September 2016
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    And fleur-de-lis, I just have to say, I looked up Glumetza and the cost averages $3,500 for 30 pills, 1000 mg. That's $7,000 a month at your dose. That's with no insurance. The generic is somewhat less and much more variable (ranging from $728 at Walmart to $2700 at Kmart) for the same dose/amount. Again, if no insurance. Still pretty unbelievable.

    Now oddly enough the plain metformin (not the ER type like Glumetza) is very cheap, like $10-$50 depending on which pharmacy, for generic, 90-day supply at 2000 mg/day. That is pretty mind-boggling.



  • dtad
    dtad Member Posts: 771
    edited September 2016
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    Yes there is a way to test our hormone levels. Unfortunately most MOs don't do it! IMO its because they know very little about female hormones. I think there should be an endocrinologist or at least a gynecologist on our medical team. For now the best way to get them checked is to see a naturopathic doctor. I think our levels should be checked before, during and after anti hormone treatment. Its a huge gap in our care...

  • Sara536
    Sara536 Member Posts: 5,937
    edited September 2016
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    It seems like a no-brainer that estrogen levels should be tested when we are prescribed a drug whose main action is to lower them. Could varying levels between people be the reason why some react so badly and others don't? Might it be that the one-size-fits-all-dose is ridiculous and is actually endangering some of us? Why should a person weighing 125 lbs. take the same amount as one who weighs 300 Ibs.? Is there any evidence that this has ever crossed a doctor's mind? Or do they just prescribe what the salesperson recommends? Has an estrogen level been established below which our muscles, bone and brains cannot function as designed? Do inadequate estrogen levels produce "difficult" patients

  • Bonniebleu
    Bonniebleu Member Posts: 33
    edited September 2016
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    interestingly enough my MO stated that tamoxifen is not a "one size fits all" drug. He said that reducing the dosage (taking just one pill a day OR one pill every other day), may help me find the right dosage. He did state that pharm companies may push to take the full 20mg, but they are selling the drug. We looked at the half life of Tamoxifen and I going off my memory there is still 50% of the drug in your system after 5-7 days.

    I had/still have SE's from Tamoxifen. At the full 20 mg, I was an emotional wreck, horrible insomnia, bones hurt.

    Now I'm at 10 mg, I have "fuzzy" thinking (real confidence booster there), fatigue.


  • Bonniebleu
    Bonniebleu Member Posts: 33
    edited September 2016
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    interestingly enough my MO stated that tamoxifen is not a "one size fits all" drug. He said that reducing the dosage (taking just one pill a day OR one pill every other day), may help me find the right dosage. He did state that pharm companies may push to take the full 20mg, but they are selling the drug. We looked at the half life of Tamoxifen and I going off my memory there is still 50% of the drug in your system after 5-7 days.

    I had/still have SE's from Tamoxifen. At the full 20 mg, I was an emotional wreck, horrible insomnia, bones hurt.

    Now I'm at 10 mg, I have "fuzzy" thinking (real confidence booster there), headaches and fatigue.


  • Sara536
    Sara536 Member Posts: 5,937
    edited September 2016
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    So glad that your doc is supportive of adjusting down and I hope you can find a comfortable level. Please let us know how it goes. Maybe if my MO had started me on a low dose I wouldn't be in such a rebellious snit

  • dtad
    dtad Member Posts: 771
    edited September 2016
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    Sara...Agreed! How about testing our levels to see if the anti hormones are actually working? Nope, just wait to see if we have a recurrence is their answer! Really?

  • Sara536
    Sara536 Member Posts: 5,937
    edited September 2016
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    Anyone know what it costs to test estrogen?

  • Blinkie
    Blinkie Member Posts: 123
    edited September 2016
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    I'm answering the question "Does anyone refuse hormone therapy altogether?"

    I refused to take Tamoxifen after surgery and radiation for DCIS in the right breast in 2007. Three members of my family had experienced strokes which made me wary of it.

    Last spring (2016) my annual mammogram showed that something had changed in the left breast. After surgery the diagnosis was invasive ductal carcinoma stage 1. This time, I decided to take the medication, and am on my second week of anastrozole.

  • pupmom
    pupmom Member Posts: 1,032
    edited September 2016
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    Blinkie, I'm glad you figured things out before it was too late. A lot of deceased members here did not.

  • Sara536
    Sara536 Member Posts: 5,937
    edited September 2016
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    Yorkiemom, with all due respect, there are no deceased members here to speak for themselves. We don't know whether they succumbed because they did or didn't make the same decision you would have made. May they rest in peace.💞

  • pupmom
    pupmom Member Posts: 1,032
    edited September 2016
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    Sara, I agree in general with what you said. I know some of these people, but will not reveal confidences. May they all rest in peace.

  • Linda111
    Linda111 Member Posts: 1
    edited September 2016
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    This is my experience with Letrozole- I was diagnosed a year ago, stage1/2, ER+. I started on Letrozole to shrink it as it was a large tumor. I did this for about a year, then had surgery this past March. I did not do chemo or radiation. I continued with the Letrozole. It has been pure HELL. The bone pain is unbearable, at times it feels like my hands and feet will just break off. Muscle atrophy and pain, eye problems, severe depression, anxiety, sadness, stress, cramps (like menstrual), of course hair thinning, fatigue, weight gain............... I finally called my Onc. nurse 2 weeks ago, begging to see if I could take a break from it. Agreed to a week, the pain was increasing, called back. Right now I am off of it for 3 more weeks but dread getting back on it. My qol went to shit and I just really don't want to live like this anymore.
    I might be put on something else, but I can't see it being much different.
    One size does NOT fit all and I know that I am ingesting toxic levels ( whether the "norm" or not). I despise this evil drug , it only makes the cancer nightmare live on.
    I want to stop it, but am feeling damned if I do or don't.
    I am 55 and feel much much older. It's like the cancer gets you one way or another.
  • Sara536
    Sara536 Member Posts: 5,937
    edited September 2016
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    Is it possible that the MOs reallydon't believe what we say we are going through? I was talking to the PS who did my reconstruction. I told her I had gone off of Anastrozole. She wanted to know why. I gave her a pretty good description of tourture. Then she very innocently asked if I knew what it could be that was causing that. I replied, "Poison!" She seemed surprised. but then, she is a plastic surgeon and a good one and when patients come to her for their followups they are happy and grateful. But really, maybe the MOs actually don't know the pain they are inflicting and they think we exaggerate. I hear that soldiers and police officers get tear gassed as part of their training just so that they understand what they are really dealing with...






  • dtad
    dtad Member Posts: 771
    edited September 2016
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    Sara...I'm sure there are deceased members that decided not to take an anti hormone. However there are also many deceased that did do the recommended treatments. Let's try to respect all decisions made.

  • farmerlucy
    farmerlucy Member Posts: 596
    edited September 2016
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    Linda - You might consider Tamoxifen, it is easier on the joints. Still not a picnic, but for me it is doable vs AI.

  • lrbeckley
    lrbeckley Member Posts: 1
    edited September 2016
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    Hi everyone. I am new to this sight. I had ER+ breast cancer stage 3b in 2008. Had chemo and radiation. I have been on Femara (Letrozole) 2.5mg for about 7 years. I never read about possible side effects unless I am feeling something is wrong. I do not suffer from anxiety or depression, my bone density tests are still normal. I just turned 61. Weight is a problem. My gyno told me I wont be able to lose until I am off the femara. I am going to try anyway. Since I retired my stress level is lower. Other woman with similar cancer out here in Ohio were on tamoxifen for 5 years and they don't even go back for checkups. That scares me. I would love to off the femara but am afraid of the consequences. Has anyone out there stopped the hormone therapy for a long period of time and survived?

  • gypsyjo
    gypsyjo Member Posts: 112
    edited September 2016
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    Linda, It is worth trying another. I had so many problems with anastrazole. Aches, pains, mindfog, fatique and depression. I didn't think life was worth living feeling the way I did. It impacted all my activities. My Onc let me had me go off it a month before an extended trip. After about a week I was feeling my old self and had a great trip where I was so active I dropped 10 lbs even while eating some deserts! Upon my return, I was started on aromasin. I do notice some fatique, but otherwise feel fine. I just make a point to pace myself. It's not like the old me, but I am again living a good life. I will be seeing him again in Nov, but think the aromasin is the one that will work for me. (If aromasin didn't work, he was going to try me on Tamoxifen. If that didn't work, I could have stopped with his blessing knowing that the most important thing was to get excercise and live a good life.) I thought they would all be the same, but was proved wrong.



  • Sara536
    Sara536 Member Posts: 5,937
    edited September 2016
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    dtad, I'm sorry that you misunderstood what I meant (7:17pm, Sep 11, 2016) in my comment in response to Yorkiemom and I'm sorry I misunderstood what she said. What I meant was that we should not assume that anyone is gone because they "didn't figure it out" which I thought was a judgemental way of putting things. In rereading her post I can see that that is not what she meant andI think I was pretty clear that I think all decisions should be respected.

  • moderators
    moderators Posts: 8,087
    edited September 2016
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    Hi lrbeckley! Just popping in to say hi and check back soon to see the responses you're sure to get. Or, you can feel free to start your own topic under the Hormonal Therapy forum, where others can weigh in on taking a break from hormonal treatment.

    We look forward to hearing more from you soon!

    --The Mods

  • chubabubba
    chubabubba Member Posts: 2
    edited September 2016
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    I'm 74 and was diagnosed with stage 1A cancer in December, 2015. The tumor was 8 mm and I had a lumpectomy in January. No chemo or radiation. Mammoprint had a very low rating.

    I was put on anastrozole in February and have had various side effects since then including shortness of breath, fatigue, aches and pains and hair loss. We're going to Italy next week and I asked my MO if I could be off the med while I was gone. With her approval I stopped the med last week and within 24 hours it was like a miracle! The shortness of breath and aches and pains went away. I can exercise at the same intensity as last year. I didn't realize my quality of life had deteriorated so much but now that I feel back to normal, I understand how much I lost.

    The MO said with the meds I have a 4 to 5% chance of recurrence and without about 5 to 10%.

    My question is whether I should go off meds or try other ones to see if there's a better fit. My MO said the side effects would be the same on any of the aromatase inhibitors. I've read here that many women have found the side effects are significantly different between the meds. So who's right? Those of us choking down this poison or a doctor?

    Is it to dangerous to go without meds? Do different drugs have different side effects?

    Another little bit of information is I don't particularly care for my MO. She's rude, opinionated, outspoken and has no ability to relate to patients. And yes, I need to change. I thought as long as I was doing ok and I only see her for a total of an hour or so a year, I could put up with her but I'm rethinking that.

    I'd welcome input.



  • bluepearl
    bluepearl Member Posts: 133
    edited September 2016
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    Even small, grade 1 cancers that are hormone + can reappear as mets down the road. Tamoxifen/A.I.s are designed to starve any circulating tumour cells that may have left the original tumour no matter HOW small it is...and no matter if you had negative nodes, either. I am having no side effects from tamoxifen and been on it 3 years. The first time around, I didn't take it. Had I, it make very well have killed my second tumour. It is ok to make your own decisions as long as we don't recommend decisions that have no proven clinical trials. For tumours under 1 cm, the prognosis is excellent. Some women can and do do well without any further treatments. Both mine were 1 cm and .8mm but I still chose to take the anti hormones because the smaller one was grade 3. (I wasn't offered the oncotypeDX test which can pretty well tell you your risks with and without hormone treatments).

  • tgtg
    tgtg Member Posts: 75
    edited September 2016
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    Chubabubba--

    I was 71 at diagnosis and weighed my options very carefully, including reading articles in medical journals, to judge whether preventing a recurrence was worth the risk, at my age, of inviting cardiovascular problems (like clots, DVT, stroke, osteoporosis, and uterine cancer) into my body. I decided to decline hormonal therapy entirely, since it made more sense to me to remain healthy and active than to perhaps reduce my odds of a recurrence from 15% to 8%. I was reluctant to trade avoiding a possible recurrence, which can be treated, for inviting a host of life-threatening co-morbidities into my otherwise healthy life, co-morbidities that often strike before anyone is aware of them. And I made that decision long before the publication of the research article about the need to monitor women in hormonal treatment more thoroughly for life-threatening co-morbidities. My doctors, including my MO, supported my decision and continue to do so, by the way.

    This decision is a difficult one to make, though. It is a little like the decision about whether to hold a child back in school for a year: just as one never really knows for sure if the child would have been ok if he had--or had not--been held back, so too no one, not even the doctors, will ever know for sure if a recurrence or a new ER+ cancer would have appeared if a woman had--or had not--done the hormonal therapy. I know about the same number of women with stage 1 cancers who have experienced recurrence despite taking anti-hormonals as I know women who have experienced no recurrence despite declining the anti-hormonals.

    Not many women on these boards speak openly about having declined hormonal therapy, since the prevailing attitude is to commit to fighting back as hard as one can, no matter what. So you won't see much real discussion here--just look at how many responses to the forum topic ("Has anyone refused hormonal therapy altogether?") are from people who didn't refuse it all and are ignoring what the creator of the question wants to know!

    If you want to have a frank discussion between two septuagenarians with breast cancer, feel free to PM me! tgtg