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Does anyone refuse hormone therapy altogether?

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  • debiann
    debiann Member Posts: 447
    edited July 2015
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    Izzysmom,

    I too have a history of having a reaction to most prescription meds, but so far I'm doing good on generic arimidex (Teva brand). The different generic brands can have different fillers and Teva was recommended as the brand best tolerated by most. I've been on it almost 10 months.

    In the beginning I had some daily hot flashes, but they weren't bad and I hardly have them now. I sometimes wake up with joint stiffness that goes away as soon as I start to move around. I'm finding the more active I am, the less stiffness I have. 

    I'm not sure if the se's I had were even from the AI because for most of this time I was also finishing up herceptin and had two recon surgeries. Now that all my other tx has ended, I'm feeling really good on arimidex alone. Hope it works for you too.

  • moderators
    moderators Posts: 8,086
    edited July 2015
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    Dear finding beautiful_34, We just wanted to welcome you to the BCO community. We are sorry to hear about all of the complications that you are dealing with related to breast cancer and its treatment. You have joined an informed and supportive group of others with shared experiences, We hope that you can connect with those who are also struggling with lymphedema, the side effects of hormone therapy and having cancer at such a young age. Please stay connected her and Pm us if we can be of help. The Mods

  • Tomboy
    Tomboy Member Posts: 2,700
    edited July 2015
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    FinfingBeautiful34, that's a very good question. I would like to hear the answer to this one too.

  • lyzzysmom
    lyzzysmom Member Posts: 285
    edited July 2015
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    Debiann, thanks for responding. Its great to hear you are doing so well on the Arimidex. I plan to start taking it next week after I get back from my trip on Tuesday and have a bone density test scheduled for the end of July.. Will try it in the mornings as I am a bad sleeper! Its probably a getter choice than the tamox. was anyway as I was post menopausal with ILC.

  • dtad
    dtad Member Posts: 771
    edited July 2015
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    I agree!

  • goldustr
    goldustr Member Posts: 1
    edited May 2016
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    I feel same I Didn't have to have chemo, had double mastectomy refused radiation, had five lymph glands were positive. Had reconstruction. Terrified of radiation. Taking marinades. None of these treatments guarrantee you won't get cancer again, but may prolong life, with permanent damage to the body. Google radial tea by Rene Cassie its a dark green page. Its worth reading it


  • dtad
    dtad Member Posts: 771
    edited May 2016
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    I too have refused conventional anti hormone treatment. Im 63 with stage one IDC and ILC. I did have a BMX however. My oncotype is 27 but chemo was not recommended. I have multiple autoimmune disease so QOL issues are very important to me. I have chosen to lower my estrogen levels through supplements, exercise and weight loss. I have lost 22 pounds since my diagnosis a year ago. I repect whatever personal choices we make to battle this disease. Good luck to all.....

  • Girl53
    Girl53 Member Posts: 41
    edited May 2016
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    Ladies: Hope I am posting in right place. Have been on Arimidex (generic) for about six weeks and am doing fine....Some mild increase in osteoarthritis in my feet and hands, and mildly worse hot flashes, but nothing horrible...no fatigue, insomnia, headaches or dizziness, etc., so far. I exercise a lot and eat well and am trim.

    Am wondering if urogenital symptoms might be worst of it for me. I have been happily remarried for 7 years after losing my first husband to a brain tumor, and I'm sad at prospect of intimacy being difficult and avoiding it because of pain. Have tried Replens, and it doesn't seem to be doing the job. Am considering talking with onc about estriol cream to apply topically. (Anyone here have experience with any kind of estrogen cream?)

    Bigger issue for me is whether taking the anti-estrogen meds are best course for me at all. My tumor was tiny and low-grade, and onc said my recurrence risk without meds was 5-10 percent. (My tumor was too small for Oncotype test). She said meds would reduce recurrence risk by about 40 percent, and that the absolute benefit would be small.

    While it's comforting to know that I could probably get away with taking nothing, I am afraid to take nothing. I have extensive family history of BC, with loved ones having died of it. I am just afraid. This is probably not rational, but it's how I feel. If I can tolerate the AI for five years -- and don't die of something else LOL -- I'll be only 58 by the time I'm off.

    Having a small, low-grade tumor is a good problem to have, I'm told. But it sure does make meds-related decision making difficult. Experiences, insights, and thoughts welcome.





  • homemom
    homemom Member Posts: 830
    edited May 2016
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    On Arimidex you have difficulty losing weight. I've gained over 20lbs since I was diagnosed. I've been on the AI for 18 months but just recently (January) started exercising on a regular basis losing just 5 lbs. I was already 20lbs over my normal weight before I was diagnosed. I was 98% ER + and while I had a low grade tumor, I took too long to get to the doc to get diagnosed and as a result it set up house in 2 nodes. I threw everything at this only because it of that. Even with the node involvement, my MO told me the chemo and rads were insurance for me.

    My plan is to go to the gym M-F and hopefully I can get my weight back down to pre BC days. I wouldn't change my treatment for anything, but if I had a small non invasive low grade tumor, I'd have to really think twice about chemo etc.


    One other thing, I have not had terrible SE's on Arimidex. Some stiff ankles in the morning and an occasional hot flash - I'm 55 so I'm done with menopause Smile

  • flowergrl63
    flowergrl63 Member Posts: 1
    edited May 2016
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    Hi Girl53

    I am several years older than you --63 but I understand your dilemma. I too had only a 5mm DCI, dx a few months ago but predominate E 95%. Lumpectomy and radiation were all on the menu. I'm finally out of the "itchy burning" boob stage and waiting for full energy return. Last rads: 4/20. I had a rad hyster/oopherectomy 16 years ago due to cerv CA, However, I was on a low dose estrodial patch all that time, with little thought of BC. Than my daughter close to 40 y/o received dx of 7mm stage III Estrogen BC; she removed both breasts, ovaries removed. She is 6 years out and is advised to stay on the AI for 10 years. She is thank God doing quite well. No one else in our very large families, both sides, with BC, save my daughter and myself. That is a bad sign I believe for my sisters and my two other daughters, suggesting, high risk. I do not want to go on AI's for the side-effects, particularly osteoporosis which I am already showing, and heart issues. I'm really, really struggling with the odds -- survival-mets-reoccurence that we all go through -- in determining and living with my choices. My daughter really did have issues with sexual relations and pain. It seemed after some years, her onco allowed for some topical vaginal estrogen treatment but cannot be sure of the name...

    Best of luck Girl with your decisions -- I must say the BC science just keeps getting better and better. My daughters onc would not let her get near estrogen anything for 5 years. The fact now that a little E can be useful in certain situations reveals how research and clinical trials are moving forward. Just my experiences, observations and opinions.

    I hope you find peace with this, as do I, and all of us here.

    flowergrl63


  • Bets67
    Bets67 Member Posts: 2
    edited May 2016
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    Yes. I am refusing hormone therapy with AI's. I'm considered very low risk with low Onc. score. Both medical oncologists have strongly recommended AI's, but I feel the side effects (including depression, bone pain, lethargy) will impact my QOL. At 67, I'm more concerned with living my life to the fullest. I was fortunate to find a medical oncologist who agreed to work with a naturopathic doctor who specializes in breast cancers. We are working on diet, exercise, vitamin/supplement therapy, stress reduction and mindfulness to reduce my estrogen levels. I have lost 12 lbs and plan to lose about 20 more lbs. We are looking at adding Metformin to my vitamin/supplement regimen to reduce sugar/insulin issues. We know that cancer cells are fed by sugar, so I am now off all sugar other than those found in fruit. Would love to hear from others who feel the natural approach may be the best approach. The push to take Aromatase Inhibitors is unbelievable to me!


  • chisandy
    chisandy Member Posts: 11,330
    edited May 2016
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    “Cancer cells are fed by sugar” is both a gross oversimplification and inaccurate. There are all different kinds of “cancer cells,” even among breast cancers. What makes a cell cancerous is that it replicates itself and/or fails to die when a normal cell would. Different cancers (and subtypes of cells) behave differently and have different biochemical composition. Sugar is metabolized (broken down) long before it gets to the cellular level. This is what makes my eyes roll when I read about naturopathy.

    When you get down to it, ALL cells are “fed by sugar,” i.e., the glucose and glycogen all macronutrients (carbs, fats, proteins) are broken down into by the digestive system, pancreas and liver. Carbohydrate (yes, even green veggies) turns to sugar. Fat turns to sugar. Protein turns to sugar. Until they discover concrete empirical proof (via electron microscopy) of “sugar receptors” (a la estrogen receptors) on the surface of various types of breast cancer cells. I refuse to grant legitimacy to pseudoscientific “nutritional voodoo.” (Heck, actual voodoo might have more of a positive or negative effect on breast cancers).

    I accepted AI therapy (letrozole) because it cut my chance of recurrence from 20-30% down to 8-9%. So far, the effects are tolerable (the worst, slowed metabolism, has resulted in a 5 lb. weight gain--some of which has come from increased “pity-party” comfort food eating). When and if they aren’t (4 yrs. and 7 mos. to go), then I’ll weigh my options.

  • Bets67
    Bets67 Member Posts: 2
    edited May 2016
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    I thought long and hard before posting on this site. ChiSandy has reminded me of why I will now take myself off of this site. Shame on you for your negativity!

  • farmerjo
    farmerjo Member Posts: 239
    edited June 2016
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    ChiSandy - Wish there was a "Like" button for your post.

    Smile

  • hopeful82014
    hopeful82014 Member Posts: 887
    edited June 2016
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    ditto, FarmerJo.
  • windingshores
    windingshores Member Posts: 160
    edited June 2016
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    I would also "like" ChiSandy's post for the info it provided, but understand, Bets,  if you feel offended. There is an active alternative forum here that might be more comfortable for you.

     It is important for all of us to be sure of what we post on here. For that reason, in my first year out, I didn't post very much :)

    I know women who are avoiding all sugar in hopes of avoiding recurrence or spread. I still indulge once in awhile. It is up to the individual to decide....but we all need really solid information.

    As for vaginal estrogen: my understanding is that the AI's eliminate the small amount of estrogen produced by the adrenal glands after menopause. Adding any kind of estrogen back in seems counterproductive to me.  But apparently MD's differ on this. Glad I am divorced and single!!



  • chisandy
    chisandy Member Posts: 11,330
    edited June 2016
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    Sorry if my advocacy for logic and science is seen as “negativity.” I too avoid sugar, but for metabolic reasons: type 2 diabetes runs in my family and I’d like to end that “streak." If we are to follow the one-size-fits all claims that sugar/fat/meat/dairy causes cancer cells to grow, we’d all be bored to tears...and malnourished. There is no single disease as “cancer,” nor is there even one single disease as “breast cancer.” There are numerous subtypes with different characteristic behaviors, and one size does not fit all, even within a certain type. For instance, there has just been new research published that progesterone and its receptors on tumors play a huge role in how a tumor cell accesses and uses estrogen--and that perhaps administering a progesterone-inhibitor to supplement a SERM (the study didn’t include AIs) might cause tumor cells to die and tumors to shrink for a much longer time--perhaps even thwart some ER+ tumors' ability to synthesize estrogen from cholesterol even when the adrenals & fat cells are prevented by AIs from making estradiol. Going on an AI is a very personal decision, and the extent and range of estrogen-suppressor drugs varies widely from patient to patient. For most of us, the benefits outweigh the risks. Blanket generalizations such as “the natural approach may be the best” or “the push to take Aromatase Inhibitors is unbelievable” are opinions, not facts--and we are free to disagree with opinions.

    Meanwhile, going back on my dead-animals-and-leaves diet has helped me drop much of the weight I gained from letrozole and now stabilized. (Wish I could get back to my pre-dx weight, but then again, wish I never got bc to begin with). Air conditioning keeps the night sweats at bay, and I will be getting a cortisone shot for my trigger thumb; I also will be getting my cataracts fixed. Many of these side-effects had begun to appear as a consequence of aging anyway (I’m 65, and had triggering in my other thumb, arthritis, slowed metabolism and ripening cataracts pre-dx). Should my side effects increase and intensify to the point where continuing AIs for 5-10 years would be less bearable than dying too young of bc, then I will revisit my decision.

  • jojo9999
    jojo9999 Member Posts: 52
    edited June 2016
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    ChiSandy, good post!

  • Artista928
    Artista928 Member Posts: 1,458
    edited June 2016
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    Just saw this. ChiSandy you're post such as above is why I try to follow you. You give real facts, not just what we hope/want to hear.

  • labelle
    labelle Member Posts: 134
    edited June 2016
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    There does seem to be some evidence that high blood glucose levels put people at higher risk for cancer, and diabetes, and a host of other diseases and eating processed sugar does cause blood glucose levels to spike. There is no doubt being obese or overweight puts one at risk for many kinds of cancer and for a recurrence of BC, and maintaining a healthy weight while eating much processed sugar is a challenge. Really, there is absolutely no reason to include processed sugars in your diet. They aren't healthy or good for you. I think the big problem comes when people go crazy about abstaining from sugar, to the point that they limit fruits. While fruits do contain sugar, they also have all sorts of things in them that are good for us-unlike processed sugars and high fructose corn syrup (wouldn't touch that stuff with a 10 ft pole). IMO processed sugar has no place in a healthy diet.

    I stopped eating processed sugar and switched to a Paleo diet about 2 1/2 years ago. For a few years prior to that, every dang time I went to the dentist I needed a new filling or a crown (because so many of my teeth had already been filled multiple times). $$! Since switching to a Paleo diet I have not had a single cavity. Bonus!

    Whether or not you believe there is enough evidence to avoid processed sugars as a means of preventing cancer, there is plenty of evidence showing the heavy consumption of processed sugars is not good for us for a variety of reasons-possible cancer prevention aside. I don't think you will find any health care professional who will say or studies that will show eating processed sugar is good for you. It simply is not-despite how good it might taste to some of us!

  • zarovka
    zarovka Member Posts: 2,959
    edited July 2016
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    Sugar does not itself promote cancer. All cells uptake sugar at about the same rate as the grow. Cancer cells are just replicating fast. However all simple carbohydrates cause an the insulin spike and an associated inflammation response. The relationship between inflammation, insulin and cancer is well understood.

    That said, I am snacking on a (fantastic) pot brownie as I write this. We all find the right balance for ourselves in this fight.

    >Z<

  • NicoleIsASurvivor
    NicoleIsASurvivor Member Posts: 9
    edited August 2016
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    I'm also having major side effects from tamoxifen. I have been taking it for a little over a month...I experience extreme fatigue and can sleep forever it seems...and feel very confused...best way I can describe it. Counting money wrong, when I normally have no trouble..remembering simple things...and instead of hot flashes. I stay cold with very few hot flashes. Im going thru menopause because I've had a hysterectomy...Called my Onc and nurse nav...waiting on Onc to call me bk...nurse nav said that I definitely need to switch to something else. I just want to have one good day...so tired of feeling sick and being in treatment. Anyone have any luck with herbs? Or something? I can not see living this way, with being sick everyday. I want quality of my life as well, but also dont want cancer again....please help. Single mother that just wants her life bk and to be a mom... Bless us all and thank u for listening and/or commenting.

  • farmerlucy
    farmerlucy Member Posts: 596
    edited August 2016
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    babygurl - I had some similar symptoms early on. I thought they were all from Tamoxifen, so it quit it. The symptoms persisted. In hindsight I realize I was having PTSD -like symptoms. Meds and counseling pulled me out. It is quite common with us BC ladies to experience that, especially after active treatment ends. Maybe talk to the nurse about that possibility as well.

  • exercise_guru
    exercise_guru Member Posts: 333
    edited August 2016
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    Babygurl. I am not discounting how you feel in any way. Reading your stats we had similar chemo and reconstruction timeline. When did you get your hysterctomy? I had extreme fatigue . I still have it sweep over me a few days a week. I had this regardless of AI or Tamoxifen. I think it is related to the Chemo and Herceptin. For me definitely the OO/Hysterectomy because I had it all in the last year. Also my short term memory is horrible. I have had to pull my car over because I can't remember where I am going.

    I did have crazy side effects with AI but the Tamoxifen is more subtle. I cry more and I also have extreme vaginal dryness that I am trying lots of things for.

    Its hard to be patient. I feel like I am hiking out of the grandcanyon it is so exhausting.

    I agree with farmer lucy. I think many of us have PTSD in some form. There is also just the stupid timeline of letting our body readjust and heal.

  • Kaneli
    Kaneli Member Posts: 65
    edited August 2016
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    Hi Babygurl and All,

    I have been experiencing similar things. I took anastrozole(AI) for about 6 weeks and I found, after about a month, I was in a total fog. Not just that, I was moody, irritable, and anxious. I took a 17 day vacation from the anastrozole and started lestrozole about a week ago. It seemed that I calmed down a bit during the hiatus, but I am still having anxiety, and moodiness....and just kind of an "out of it" feeling. Maybe it is PTSD, or maybe it's the hormone therapy. I want to give this HT a try, but my likelihood of BC recurrence is low, and I just wonder if it's worth it. I hate feeling like this. I am reading about alternative treatments, approaches. I am really going to give this therapy the best college try, but the more I read, the more I question if this is the best course for me. Obviously this thread includes people who have wrestled similarly. My MO says that my chance of recurrence is about 9-10% without Hormone therapy, and will be cut in half with the Hormone Therapy, so maybe 5%. But I read about others on here who have similar dx (Tubular cancer, <1cm, stage 1, grade 1, no nodes involved) and they say their MO would not have even recommended hormone therapy with such a favorable prognosis. They were saying there was a 1 or 2% difference....My MO is pretty into the HT as being protocol for any BC with lumpectomy+ rads, even non aggressive types of BC. I am thinking that maybe I would benefit from a 2nd opinion. Anyway, it's a real challenge to make a decision. You have the doctors saying one thing, but sometimes I think they have a one size fits all approach. In conclusion....the jury is still out for me, as far as continuing with the Hormone Therapy................

  • meow13
    meow13 Member Posts: 1,363
    edited August 2016
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    My mo prescribed generic paxil along with anastrozole. I think it hel0ed.

  • Kaneli
    Kaneli Member Posts: 65
    edited August 2016
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    What is Paxil? An anti depressant? I took Celexa after my Hysterectomy 20 years ago, and I am considering that....

  • meow13
    meow13 Member Posts: 1,363
    edited August 2016
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    Yes it is an antidepressant, it is used to lessen the side effects in menopause and AI therapy. I was fortunate I never suffered hot flashes on anastrozole or exemestane. My biggest complaint was joint pain, headaches, ear ringing and weight gain.

  • dtad
    dtad Member Posts: 771
    edited August 2016
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    Kanell....I agree that most docs have a one size fits all approach and honestly it as one of the main reasons I chose to refuse anti hormone treatment. My health was poor prior to my BC diagnosis. I have several debilitating autoimmune diseases, the worst being a generalized neuropathy. The docs really didn't know what to do with me. Absolutely no thinking outside the box and working with my other medical conditions. They only seem to know how to follow standard protocol which is really unfortunate for me. I wish everyone well in making all the necessary decisions while navigating this disease.

  • bethanygb1
    bethanygb1 Member Posts: 8
    edited August 2016
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    Hi Kaneli, how do they decide what to put you on?? I am considering something after my rads, but not sold on it yet. And for a 4% reduction? That doesn't seem like much for 5 years of meds that has those types of side effects for you.