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Rejecting hormone therapy

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  • jasmine2717
    jasmine2717 Member Posts: 16
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    Thanks so much for your post! I'm 63 and I've had a 4mm tumor removed via lumpectomy, and I will start radiation in a few weeks, but I am not at all convinced I want to take hormone therapy. I had an appointment with an oncologist today and he gave me information on anastrozole and tamoxifen and neither sounds like something I want to be taking when I feel my risks are so low. Of course you never know what will happen but with no family history of cancer I never thought I'd be in this position in the first place! It's just encouraging to hear that others have made the choice to forgo this treatment thanks so much for sharing.

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,865
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    jasmine,

    You may have learned by now that the vast majority of diagnosed bc cases occur in people who have no genetic link to bc so no family history doesn’t mean much. As to taking an AI, Tamoxifen is usually prescribed for pre-menopausal woman, everyone does have a choice. The only thing that you need to ask yourself is how will you feel if you have a recurrence. Don’t you wish we had fully functional crystal balls

  • racheldog
    racheldog Member Posts: 209
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    I would like to ask any of you who have kindly replied on this thread to tell me if you had fluid retention, edema or shortness of breath while on either Tamoxifen or the Aromatase inhibitor drugs? Lower extremity edema? Heart issues?

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,865
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    I have been on all three AI’s and did not experience any of the symptoms you mentioned. Currently on exemestane .

  • mom2bill
    mom2bill Member Posts: 7,495
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    I am currently on Tamoxifen and have experienced some ankle swelling.

  • Esther01
    Esther01 Member Posts: 229
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    Racheldog,

    The only issue I have had on Tamoxifen is joint damage to my left pinky which is now chronically swollen and painful when I type (like right now because I misplaced my finger splint), but, that joint was already predisposed due to an existing condition with that finger. I've had no other issues whatsoever with Tam.

    My IMD has me drinking half my body weight in water each day (lbs to ozs), taking systemic enzymes (Vitalzyme) to reduce inflammation, ease my joint issues and break down my scar tissue. I have weekly EDTA chelations at my IMD's IV suite to pull out toxins (I have 6 toxic metals in my system) and to improve my microcirculation. I don't know if any of that helps avoid Tam side effects, but am amazed at how my health has significantly improved from where I started (in Yuckyville).

    I am only 7 months in to this and learning from all of you. Thank you for sharing your experiences!

    Love and blessings,

    Esther
  • etnasgrl
    etnasgrl Member Posts: 185
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    I began Tamoxifen in 2016. It caused me nothing but insane grief.....3 surgeries, (2 ovarian torsions, one of which almost ended my life, and a hysterectomy) thanks to it and years of side effects....hair thinning, insomnia, joint pain, vision problems, etc.....did absolutely NOTHING for me. Not one blessed thing.
    In 2020, I was diagnosed again with breast cancer, this time in the other breast, and with a more aggressive diagnosis than the first.
    I was determined to stay on Tamoxifen, despite the numerous problems, because I thought it would help prevent a recurrence and/or a new primary. It did not. The day I was diagnosed with my second diagnosis was the day that I took my last Tamoxifen pill. I refuse to take it again or an aromatase inhibitor. I suffered with 4 years of hell because of Tamoxifen for literally nothing. I refuse to ever do that again.
    In my opinion, cancer is a complete crap shoot. If it's going to come back, no medicine in the world will prevent it I am living proof of that.

  • Esther01
    Esther01 Member Posts: 229
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    Oh etnasgrl,

    You've been through so much. I am so sorry to hear that.

    Question for you all... I know that cancer can take advantage of not just hormones but hormonal imbalance (I have too much estrogen and too little progesterone) which caused irregular bleeding for me so my doctor has me on natural progesterone on days 15-30 of my cycle. I was on both Tam and Zoladex (ovarian suppression) for 5 months and already regret doing the zoladex. I don't know if I'll have a normal period again. The Tam and Zoladex may have pushed me into menopause.

    Has anyone stopped zoladex and had a normal menstrual period again?

    Blessings, and sorry for what you have been through!

    Esther

  • racheldog
    racheldog Member Posts: 209
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    I am very appreciative of the input from all. Before I start any of these in about a month I am researching to death and asking everyone their issues, although I probably will give a try to an AI. I am almost 100% ER+. I think being overweight had a lot to do with estrogen storage as well. From what I have read and learned (and even asked of MDs) it seems Tamoxifen has all kinds of SE. My worry on all of these is vision as I have had retinal detachments and these drugs do cause vitreous traction and Tamoxifen has some added Opthalmologic issues. (I emailed two retinal doctors). With a history of mild venous insufficiency I sure do not want more lower extremity edema either.

    I don't know. All so scary and, very correct, somewhat of a crapshoot on whether they prevent recurrances . I sure as heck do not want to feel worse on them for 5 years.

  • specialk
    specialk Member Posts: 9,227
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    esther - I have no experience with Zoladex as I was surgically post-menopausal at diagnosis and went straight to an aromatase inhibitor. Were your hormonal levels checked prior to the ovarian suppression with Tamoxifen? I ask, because Tamoxifen can cause serum checked circulating estrogen to spike and be significantly higher than usual, so if your estrogen levels were normal for age at the time of diagnosis but are not normal now, that may be the reason.

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,865
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    etnasgirl,

    I am so sorry that Tamoxifen caused you so many issues. It happens and unfortunately even if you don’t have issues with the meds there is no guarantee that you won’t have a recurrence. I hope that everyone considering these meds fully understands what can happen and that there are no promises made.

    That being said you are no more living proof that bc or the anti-hormonals is a crapshoot than I would be if I said that AI’s have saved my life. I was metastatic from the beginning and have only been on AI’s . That was ten years ago. Ten years with no progression, however it is not known why I have done so well. It would be easy to say that it is the AI, currently exemestane, and I was proof of that, but we know that there is currently no way to know. My point is that anti-hormonals, statistically, do offer protection from recurrence. The problem is that there is no way of knowing who those people will be just as we don’t know who will take anti-hormonals with no/minimal se’s and who will,find them debilitating. Additionally, statistics have no predictive value for individuals. So you and I are just two anecdotes and proof of nothing beyond the effects these meds have had on us as individuals.

    Nothing, absolutely nothing that comes with breast cancer tx comes with guarantees. Depressing as that sounds it is our truth at this point in time. We simply play the odds and hope we come out on the right side of them. Taking anti-hormonals is a way to increase your odds of not recurring but you may have se’s and there are no guarantees. Take care.

  • KateHanni
    KateHanni Member Posts: 70
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    We all have our own unique path to take regarding our final stage cancer treatment. I work for a healthcare non profit so I write research grants (not related to cancer) related to auto immune hair loss. That said, I had such terrifying side effects with anastrozole from day one my MD took me off after 7 days. No bone pain, but every other side effect. Then put me on exemestane generic and less side effects for 3 weeks until suddenly I couldn't lift my head off the pillow from pain in my neck and headache. My MD/Onco took me off that for 2 weeks then put me on brand Aromasin. I went against medical advice and am taking it every other day after reading a clinical trial that stated aromatase inhibitors do not fully metabolize for 72 hours. Even on the days I'm not taking the Aromasin I still feel all of the side effects. I'm absolutely not recommending anyone take this path. It's my path. The side effects that were most concerning were severe depression(actually crying when I was on the phone with our pharmaceutical partners where I work), headaches beyond bad, blurry eyesight, not sleeping, neck pain personified, anxiety personified, and I wet my pants twice and had no muscle control which has never happened to me before. That's not a side effect that I saw on the list oh and when my husband and I went kayaking with a friend who is a physician, I got hundreds of blisters from sun exposure on both of my arms. That's not a noted side effect here in the US but it is a known side effect disclosed for AI's in the UK. Alarming right? So I've made up my mind that my compromise, regardless of the risk, is every other day on Aromasin and I'm tolerating it pretty well.

  • KateHanni
    KateHanni Member Posts: 70
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    I totally get where you are coming from, however you are not correct about the number of people who have side effects. It's a minimum of 50% of those who take Aromatase Inhibitors who left the clinical trials for Exemestane and Anastrozole. They left entirely due to side effects and refused to report further and were not tracked afterwards to see how they fared without them. Many studies report up to 80% have side effects that are barely tolerable and for the elderly taking them daily can be overly toxic.

    Now, as fate would have it, my mother also had DCIS HR+ cancer and was on anastrozole for 5 years and had zero notable side effects. I say notable because she did not know that her cholesterol jumped as did her blood pressure as a result of the AI's and she has severe memory loss. She has a PHD in economics and has always exercised/walks 5 miles a day, even now at 85 and has the bone density of an 18 year old according to scans. Her breast cancer was 5 years ago. 20 years ago she had endometrial cancer and had her uterus and ovaries removed. That is why she did not have hot flashes or other menopausal side effects of the AI's. So it's very hard to compare apples to apples here and yes, it is a very personal decision.

    I realize I'm taking my life into my own hands by taking my AI's every other day, but I couldn't tolerate them daily. I would have had to quit my job and be bedbound. That's not living.

  • racheldog
    racheldog Member Posts: 209
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    Yikes. Yes , we all need to make our own decisions and although I will give them a try soon, if I get debilitating side effects (I live alone) and cannot take care of my own life, house, dogs, on and on.....I will probably bail on them. How about asking the question: Has anyone seen a naturopathic doctor for ways to reduce estrogen? I have heard of DIM but know little about this.


    One would think after all these years that Big Pharma would have come up with some other options for breast cancer patients? Tamoxifen was the first and out for years, until the AI's came out.

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,865
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    Well, there are side effects and there are side effects, i.e. some can be easily managed, others not so much. Yes, I do realize that many bail before they finish the prescribed course of anti-hormonals. I do have joint pain which I manage and at stage IV, I can only imagine giving them up if those se’s became intolerable since progression might be the result of doing so. In reality however, who knows what might happen?

    I am not naive and certainly not a fan of the obscene profits the pharma companies make but I think the lack of better treatments with few side effects speaks more to the complexity of bc than anything else. Best wishes to you all with your decisions.

  • tmh0921
    tmh0921 Member Posts: 518
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    Rachaeldog

    I'm on Letrozole and it has caused high blood pressure. My blood pressure has ALWAYS been lower than normal, but once I started Letrozole it started to creep up and I was retaining water. One day I woke up with a raging migraine and was achy all over and restless. I took my BP and it was 172/110! I was lucky enough to get in to my doctor that same day, and now I take lisinopril hydrochlorothiazide which is a BP med with a diuretic. I did NOT have this issue with Tamoxifen.

  • salamandra
    salamandra Member Posts: 736
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    Racheldog,

    There are other SERM options for tamoxifen but they have less research behind them so many docs/insurance companies are less likely to support them. But for example, I am on toremifene instead of tamoxifen because I couldn't tolerate tamoxifen. Another woman on this board was recommended to try Evista.

  • threetree
    threetree Member Posts: 1,386
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    KateHanni - I too have gone rogue and am taking my letrozole every other day. Like you, I read about the drugs taking 48-72 hours (in the case of letrozole) to metabolize and how the daily dose can be too much for older people. I also have basically a lot of side effects and I really do not notice anything but a fine difference between the side effects I feel the day after I take the pill, vs the day after I don't take the pill. I took one of these pills yesterday evening and wound up with insomnia and bad night sweats, etc. Very stiff and achy in the morning, super weepy, but I am noticing that those kinds of symptoms are ever so slightly less on my "off the pill" days. What I read says that you still get the same benefit, even on these altered dosing schedules, so I'm not super worried, although I realize there is little scientific evidence to back it up. I'm just glad, in spite of no real side effect differences, that I am only putting half the number of those pills in my body overall. They are toxic and the longer they are taken, it is my understanding that the more likely some of the more awful side effects (heart trouble, etc) will happen.

    Racheldog - I know what you mean about whether this stuff interferes with your ability to manage your life. I too live alone and am facing an issue right now where I have to wonder if this letrozole isn't causing me to almost be incapable of taking care of myself as well as I should and would be expected to. I live in an apartment complex and in a couple of days, we are supposed to have "investors" come to inspect every single room of each and every apartment and there is apparently no getting out of it for any reason. I live in a mess of clutter, piles of paper, and old boxes still not gone through since I had to move almost 2 years ago in the middle of radiation treatments. Since then I have been so fatigued from the cancer treatments and now so achy and sore and stiff from the letrozole, that I just cannot sort through boxes, move them around, etc. I also find it difficult to get up on my step stool to put things away in high cupboards and more. My chest muscles are a mess after the surgery and radiation and all it takes is minimal activity to set off a real bad case of costochondritis that sends me to the ER. I am terrified to have these people come look in my apartment, because it looks like a disaster, but there is very little I can do, but throw out the routine trash, clean the toilet, make the bed, etc. All the other clutter and junk will have to stay, because I just cannot take care of it, due to all these treatment side effects. The Letrozole also makes me so emotional and weepy that I've done nothing but cry ever since getting the notice that these people will be coming; just because I can't do anything to clean up and I'm embarrassed, stressed, and anxious - real fearful about just how much I am really able to manage on my own anymore, and all since cancer treatment, especially letrozole.

  • racheldog
    racheldog Member Posts: 209
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    To Salamandra and everyone for input: I never heard of some of these other drugs , thank you. I will investigate.

    To Threethree: OMG, I moved out some things from my mothers house when she passed and I have boxes everywhere. Fortunately I do not have anyone but myself and my dogs looking at them, so I will get to them when I feel like it.


    These drugs just sound awful. They are toxic. I am sure I will give them the ol' college try but either stop if I cannot tolerate them or do every other day or ??? The oncs have said there is no way of measuring estrogen levels while on these so how do we really know the benefits? I guess I feel that we need some estrogen after menopause because without it, heart issues can occur. But the retinal issues, the joint pain, the insomnia , edema, the depression , the female issues for some and OMG the elevated BP is just unacceptable. It leads you to taking another pill to chase the untoward side effects of these lousy AI drugs. I don't know. Still pondering.

    Thank all of you for answers and feedback.

  • threetree
    threetree Member Posts: 1,386
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    Racheldog - Some of my boxes are from my parents too - also some I've never gone through since a divorce 16 years ago! Too emotional. Like you said, with just yourself and pets they can just sit, but if anyone else gets involved, problems arise!

  • chelsea5
    chelsea5 Member Posts: 46
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    hi beets…

    I am on year three of AI Letrozole (Femara) and all is well. Perhaps give AI a try. I have had some joint pain and some hot flashes (treated with Venlafaxine). So far I’m going with the data which I believe supports AI use with improved prognosis. This is for sure an individual journey.

  • KateHanni
    KateHanni Member Posts: 70
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    I'm not advocating for or saying this will work for anyone, but in between my trial of anastrozole and exemestane I took grape seed extract and I had the bone pain and hot flashes so I know it was have an effect on my body. Many body builder forums talk about grape seed extract as an estrogen blocker which apparently raises their testosterone!

  • KateHanni
    KateHanni Member Posts: 70
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    It does support prognosis and helps avoid a distant recurrence of HR+ cancer. That said the side effects are not always tolerable as in my case, so I have not abandoned them but I have taken my life in my own hands a bit by taking them every other day to reduce some of the serious side effects. I wish the medical community had tracked the 50% of women who left the clinical trials of exemestane and anastrozole to see how many, how soon had a distant recurrence of HR+ cancer.

  • KateHanni
    KateHanni Member Posts: 70
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    I'm wondering if there is any interest in creating our own group of women who are either abandoning or altering their course of taking the meds like we are in terms of taking the dose every other day? Obviously pharma is not paying attention or they would be trying to create a molecule that had less side effects but I work closely with our pharma partners at my non profit and it appears that once the AI's were approved, that was the end of that process of finding treatments for HR positive BC.

  • KateHanni
    KateHanni Member Posts: 70
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    Have you tried the AI's and what has been your experience?

  • KateHanni
    KateHanni Member Posts: 70
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    Exemestane/Aromasin Brand which is what I'm taking has raised my blood pressure and almost immediately I lost a tooth. Joint pain in my spine and a few other issues. Really bad. Is there anyone on this forum that has stopped the AI's and who is willing to talk about their health now?

  • KateHanni
    KateHanni Member Posts: 70
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    Yes I have swollen ankles on exemestane, and shortness of breath and chest pain.

  • KateHanni
    KateHanni Member Posts: 70
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    Everyone has a different set of circumstances. My mom was on anastrozole and had no notable side effects (but her cholesterol spiked, blood pressure spiked and her memory is gone) but all that said she had endometrial cancer 20 years before the breast cancer so her uterus and ovaries were removed which created a very low estrogen environment so it should have been expected she would not have the same side effects that I've had.

  • KateHanni
    KateHanni Member Posts: 70
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    Is there anyone here who has stopped taking the AI's and what has happened since stopping them?

  • moth
    moth Member Posts: 3,293
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    KateHanni, this msg board doesn't thread replies so it can be trickier to follow.

    There are people who quit and recurred.

    There are people who quit and haven't recurred (yet?)

    There are people who didn't quit and recurred.

    There are people who didn't quit and didn't recur (yet)

    The large scale studies show that the risk of er+ cancer persists. Studies are ongoing about how long the optimal anti hormonal treatment duration is.

    Individual stories can't really help us make personal health decisions.

    Did you see the link I posted the link to Predict on the 1st page. It does let you change length of hormone treatment and see large population data about survival.