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Rejecting hormone therapy

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  • mavericksmom
    mavericksmom Member Posts: 1,158
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    Trishyla, wow, you were so much kinder than I would have been! I agree with you 100%. Talk about “ well said!” You couldn’t have said it better!

    Maybe Moth was having a bad day, or maybe she didn’t think what she wrote would seem offensive?

    Fortunately most people understand that this is a sharing forum, and that we all have the right to make our own choices

  • JanetM
    JanetM Member Posts: 47
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    I rejected hormone therapy twice once in 2011 after a lumpectomy for LCIS and again in 2020 after a BMX for DCIS. I already deal with joint pain from Rheumatoid Arthritis and don't need to make that worse as the medications I take for that compromise my liver. It's always a choice. Everyone needs to make their own based on their medical conditions and what they think is best. Sometimes I think that maybe if I had done hormone therapy in 2011 that maybe they wouldn't have found DCIS almost 10 years later but there are no guarantees in life. You do what you think is the best at the moment.

  • princessbuttercup
    princessbuttercup Member Posts: 159
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    I was having second thoughts about Letrozole recently, after the weight gain (in spite of increased exercise/diet that consists of mostly green vegetables, eggs, and nuts) put me into the pre-diabetic category. Letrozole is like an anchor dragging behind a boat. It's negative metabolism. Then there is the joint pain, insomnia, indigestion, and everything else. But the pre-diabetes got my attention. Certainly the risks of diabetes outweighed the risk of distant recurrence, right?

    Two doctors convinced me this week that staying on Letrozole is still way better than all the alternatives put together, and my personal risk level is high enough that I should keep trying. Started Metformin today to help bring down my A1C.

    All of these other things can be fixed and dealt with, but metastasis terrifies me. We choose not to listen to advice of doctors or the perspectives of others here at our own peril, IMO

    There's recent research about how some women will benefit from closer to 10 yrs of anti-estrogen meds. I had to do a mental reset this week after learning that I'm not really on the 5 yr plan anymore.Wishing everyone the best.

  • mavericksmom
    mavericksmom Member Posts: 1,158
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    Thanks for sharing, PrincessButtercup! I can see why your doctors are pushing the Letrozole! You did exactly what most of us do, you took all their advice, all your knowledge of the benefits of Letrozole and the side effects. You applied it to YOUR cancer and Your life, and made the decision you feel is best for you! Thank you!!!

    I did the same, but for me and my cancer, I decided there was a greater harm taking the Letrozole than not. Even though we came to completely opposite choices, we did so in the exact same manner. We both made the best decision for ourselves!


  • muska
    muska Member Posts: 224
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    @ Trishyla and others who rejected hormonal therapy

    For some reason, I found the tone of your earlier comment directed at Moth offensive. If anything, I for one am always grateful when someone more experienced stops by to give their perspective - in this case, a stage IV perspective - and please don't forget many who are currently early stage will end up on the stage IV forum (our stat experts will give you the latest stats, but there's a good thread here that is called something like "why 30% of early stage... etc.")

    What is this thread really about? The OP deleted her post and hasn't posted anything since, so we don't exactly know what she wanted to say or what her situation is. Most posters who jumped in to share their thoughts about the topic's name, explain why they decided not to do hormonal treatment and almost all are stage 0 or 1. It's much easier to 'reject' when your risk is really low and the benefits are questionable. When one already has locally advanced disease and the risk is high, she is likely to be more persistent in staying on prescribed therapy and making bigger effort to work around the side effects if there are significant ones.

    Everyone makes their own choices and are entitled to them, even if it's not doing any treatment at all. Nobody argues with this.

    Why are we spending time on this forum? Why Moth whose time is quite valuable, spends it sharing her thoughts here? I think we do it mostly to support new members who are understandably very confused, especially at the beginning. What was the main message to women who are advised to start hormonal therapy? Work with your doctor, give hormonal therapy a try before rejecting it. If/when the cancer comes back, it will likely be terminal (again, our stat experts can give you some numbers if that's what you want.)

    Good luck to all.

  • VioletKali
    VioletKali Member Posts: 97
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    Moth,

    My intention isn't to offend, but I am being honest when I say that certain joint pain ruined my quality of life. Some people, like myself, would rather die than be subject to certain things that reduce our quality of life.

    No, not everyone will view joint pain or a colostomy as being something that ruins quality of life. This is okay, I would never attempt to convince someone to think the way I think. We are allowed to have thresholds of experiences and pain that we refuse to handle, for some this is higher than it is for others.

  • VioletKali
    VioletKali Member Posts: 97
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    Muska,

    I KNOW it will be terminal, but I still will not choose to do chemo. I would rather have 1 good year than 10 years of what 8 deem as poor quality.

    I also am a member of Dignitas International, and absolutely will not allow myself to suffer.

    I am not scared of dying, I am scared of living poorly


  • floral
    floral Member Posts: 10
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    moth, your post is popular with me. I see some jaw dropping beliefs when it comes to breast cancer coming back. Many along the lines of, «My doctor says I’m low risk and if it comes back we’ll just treat it again. » Yeah, no!

    I have to admit, I had some misconceptions before I was diagnosed. For example, I thought if it came back it was because it was treated incorrectly. How wrong I was. But although I got some extremely helpful literature from my doctors, and I love my surgeon, no one has ever stopped to make sure I have a complete understanding of what the various scenarios are. On the other hand, I’ve never even questioned a suggested treatment.

    I do get some flak from my family about taking serious medication that does cut my smallish risk down to nothing. My response is, if it comes back, my stiff knees and three trigger fingers are not going to be my biggest problem. You are right about the ablist thing. Yes, I have stiff knees, but there is plenty I can do that makes me happy

  • racheldog
    racheldog Member Posts: 209
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    Someone had mentioned this other discussion Board. Last night I perused the "30% of early stage....." posts and I found it to be the most depressing of all posts that I have found since joining these group discussions. I am early stage and, naturally, worrying about my future. This diagnosis has shot down a lot of plans I had for my retirement and years ahead. I pray for a good 10-15 years recurrance free but I am older and my decisions will not be what a younger person diagnosed with BC will choose. I have been following the posts of VioletKali and I stand with her. I am also a medical provider. I have done all that I am supposed to do---modality wise--at early stage but I plan to do this once. I have seen too many treatments pushed at older patients in my career that had untoward outcomes. My journey has not been easy so far and I have been the poster child for adverse SE except for the Herceptin which I am in the final run of. I will finish that.

    I had no family history of this, no mutations, very small tumor , clean path except for the dang Her2+ and grade 3, thus the chemo, etc.

    My feelings after reading the depressing "30%...." post is that this is all a huge crapshoot. No one is guaranteed anything that these treatments will or will not work or will the BC come back. There are those who stop treatment and cancer never comes back. And those who do everything and have recurrance. Being single, I am not going to feel crappy the rest of my life with treatment modalities. I would choose quality and having my brain and body function without assistance. Or having to call someone in the middle of the night. Or sit in an ER. I do not know about Dignitas but this country and the states that allow Death with Dignity and or similar organizations give hope that we can find ways not to suffer. My last horizon will be the AI drugs, which I will give a shot to. But I already have plenty of arthritis and if I become a cripple on these I may ditch them. Again, I, too want to live but not "live to just exist" with treatment plans that cause suffering.

  • beesie.is.out-of-office
    beesie.is.out-of-office Member Posts: 1,435
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    "My feelings after reading the depressing "30%...." post is that this is all a huge crapshoot. No one is guaranteed anything that these treatments will or will not work or will the BC come back. There are those who stop treatment and cancer never comes back. And those who do everything and have recurrance."

    All true. BUT...

    If you've read the "30%" thread, then you've seen my numerous posts voicing my frustration that this outdated statistic keeps being revived on this site. It certainly is true that at one time, possibly when the thread was started in 2013, 30% of early stage patients did eventually develop mets. But an analysis of the most currently available metastasis and mortally data suggests that today, the figure is at most 25% and may be closer to 20%. I won't cover off that data here because I've posted pages and pages in the 30% thread. It is also important to keep in mind that "early stage" refers to everyone who is Stage IA through to and including Stage IIIA, regardless of aggressiveness of diagnosis. Whatever the percent is of early stage patients who metastasize, 30% or maybe now 20%, it has never been true that those who are Stage I face the same risk as those who are Stage III.

    Does it really make a difference if the risk is 20% versus 30? In one sense, no, because in both cases, some of us who are early stagers will progress to develop mets, and there is no way to know who it will be. And that's why we say it's a crap shoot. But in another sense, the 20% versus 30% is huge. This represents 10% of breast cancer patients who in the past would have developed mets, but today - because of the treatments available - will never develop mets. In North America, over 10 years, this represents more than 250,000 breast cancer patients who 20 or 30 years ago would have been doomed to die of breast cancer, but who today will never develop mets and will survive.

    I am an early stage patient. Like all of us, I don't know my fate. Some of us were cured by surgery alone, and regardless of any other treatments, we never would have developed mets. Some of us will be in the approx. 20% who eventually develop mets, regardless of any other treatments we have. And some of us will be in the group who would have developed mets but never do because of successful treatments. In the past, those treatments were radiation and chemo - both of which have been advanced over the past 20-30 years. Then Tamoxifen was added, followed by the AIs, Herceptin and now a long list of newer drugs. If you look at the SEER data, you'll see that 40 years ago, the 30% figure was closer to 50%. Now it's closer to 20%. That is a lot of lives saved due to treatment.

    And that's why, as an early-stager, after doing my own risk/benefit assessment based on my own diagnosis, I'll accept some QOL side effects and stick with my AI. Of course, what's most important is that everyone make this decision based on their own risk/benefit assessment, because we each face a different level of risk from our diagnosis, and the benefit from meds can range from tiny (for those with a very favorable early stage diagnosis) to huge (for those with an aggressive and less favorable early stage diagnosis).


  • KateHanni
    KateHanni Member Posts: 70
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    I phoned the oncotype DX folks this morning and asked if there was an algorhythms for distant recurrence without the AI's and they don't know of one. They suggested I speak to my oncologist who has already told me even though with the AI's my risk is 5% for distant recurrence, without the AI's my onco said between 15 and 18%. My radiologist said 10% and he invented the brachytherapy radiation treatment so he's super smart and I like that number but I don't trust either.

    I don't know why all of the 50% of women who left the clinical trials for all of the AI's side effects; why they don't track them to see what the true recurrence rates are if you cannot tolerate the AI's. Makes no sense to me.

    I've decided, AMA, to take the Aromasin every 2 days to see if that helps reduce the side effects.


  • threetree
    threetree Member Posts: 1,350
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    I've often wondered the same thing, i.e. why they don't take the women who voluntarily decline AI's and then follow them? It wouldn't be a random sample, but it would be something! I don't think there's anything out there that compares women on AI's to women on nothing. I know they have an ethics problem that makes things more difficult, but with those who completely voluntarily do not want to take an AI, and would agree to being study subjects, I don't know why they couldn't at least get some sort of data.

    The AI's were compared to women on Tamoxifen and then I think Tamoxifen was compared to women on some other older drugs, etc. That's a long chain of drug comparisons for many years, that never seem to mention anything about how any of these drugs compare with doing nothing. How are we to ever get a real clear picture of what the outcome might be if we decline or quit early?

  • beesie.is.out-of-office
    beesie.is.out-of-office Member Posts: 1,435
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    My MO told me that AIs reduce metastatic recurrence risk by approx. 1/3rd. Therefore if you have an Oncotype score and know your recurrence risk with an AI, it's simple math to figure out your recurrence risk without an AI.

    The CancerMath http://www.lifemath.net/cancer/breastcancer/therapy/index.php and PREDICT UK https://breast.predict.nhs.uk/tool websites also both allow you to see your risk without AIs and with AIs. If you use either of these websites, you'll see that they both calculate the benefit from AIs to be approx. 30%.

    Here's a screen shot from PREDICT. I input a random patient, 55 years old, ER+, HER2-, Ki-67 positive, 2.5cm tumor, no chemo.

    image

  • threetree
    threetree Member Posts: 1,350
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    I'd still just like to see a clean head to head comparison of a large group of women who take Letrozole for 5-10 years vs a group that opts for no AI's or Tamoxifen at all for whatever reasons, and haven't taken any before. I would think that cancer researchers and other patients would also want to see something like that. What would the recurrence/survival patterns look like statistically overall? Would the degree and nature of any recurrences look any different and if so, in what ways, etc.?

  • beesie.is.out-of-office
    beesie.is.out-of-office Member Posts: 1,435
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    ThreeTree, I can't see that happening. AIs are older drugs now. A 10 year study will take probably 13 years to run, from inception to recruitment to analysis of data. By then AIs will be even older drugs. There is a limited amount of research money, and as it should be, it is allocated to newly developed drugs and treatment protocols. While there has never been a clean study comparing patients taking AIs against patients taking no meds, there have been enough studies on AIs that the effectiveness of the AIs can be extrapolated and confirmed. How much AIs reduce risk is not a mystery - even if many MOs play dumb or lie about it in order to pressure patients to take these meds even in situations where the risk of mets is very low and therefore the benefit from AIs is small.


  • AMG2
    AMG2 Member Posts: 90
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    Beesie, it seems a retrospective study could be done using historical controls, meaning people documented to have refused AIs vs those who took them for 10 years. It wouldn't necessarily require starting from right now, although that would be a better design of a study. I know various organizations keep deidentified patient data for just such use, so it is possible it could be done, but as you state, would still take money, and then peer review and publication. I've used just such data for my own work unrelated to cancer of any kind. It does come with drawbacks, but it seems in this case you could look retrospectively at those that took them vs those that were recommended and didn't take them for similar cancers at roughly the same times and be able to draw some conclusions.

  • threetree
    threetree Member Posts: 1,350
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    I'd also be interested in seeing a clean head to head involving those who took the AI for 5-10 years and then stopped per standard of care. After stopping, how do they compare throughout the rest of their years with those who never took one at all? Are those who took an AI more protected throughout their remaining years (post prescribed treatment time) than those who never did? Do they "catch up" to the non-users after stopping following the 5 or 10 years of treatment? I've read on here about some who within months of stopping the AI had recurrences/spread, yet others go on with no problems, just like the women who opt out. Some never have any more problems, but some have subsequent problems immediate or not. I would think that some sort of trend would be apparent if the right study got done.

  • AMG2
    AMG2 Member Posts: 90
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    ThreeTree, yes that would also be very valuable info helpful for making decisions about long term therapy. I have a hard time believing no one has done at least some related study, and am going to look and see if I can't find some information on pub med. The link that moth gave earlier for predicting risk indicated for my particular case, outside of surgery, hormone blockers offer the best benefit, more so than chemo or herceptin, which really surprised me. My MO also indicated that ER pos tumors are tricky, and at this point more tricky than Her2 pos ones. These conclusions can't be based on no data. There has to be something to back that up. At least I hope there is!

  • AMG2
    AMG2 Member Posts: 90
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    ThreeTree, yes that would also be very valuable info helpful for making decisions about long term therapy. I have a hard time believing no one has done at least some related study, and am going to look and see if I can't find some information on pub med. The link that moth gave earlier for predicting risk indicated for my particular case, outside of surgery, hormone blockers offer the best benefit, more so than chemo or herceptin, which really surprised me. My MO also indicated that ER pos tumors are tricky, and at this point more tricky than Her2 pos ones. These conclusions can't be based on no data. There has to be something to back that up. At least I hope there is!

  • threetree
    threetree Member Posts: 1,350
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    AMG2 - I would be curious to see what you find if you do decide to search around.

    Interesting what your oncologist said about ER positive tumors being tricky. I had not heard that before. I'd heard that they were the "better" (yeah, right) kind of cancer to have, but that overall the risk remains pretty much the same throughout your life, whereas triple negative does become lower risk as time goes on. I did know that HER+ added to one's difficulties. You do wonder where some of this info comes from.

    I have seen it on here more than once where someone, in an attempt to encourage someone else to continue with their AI, when they are thinking of quitting, say that even if they can hold on for 2 years, they will have some lasting protection and that that would be worth something. They say it as if it's some official thing that has been decided; that 2 years gives a certain amount of ongoing protection that one year apparently doesn't. (How much protection? What about 3 or 4 years, etc.?) I have never seen anything in writing that supports that idea, nor have I heard it from any medical professional, but some on here seem to have gotten that info from somewhere. I have no idea if it's true or not. A lot of stuff just kind of "goes around" and it's hard to know what's really solid.

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,834
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    I’ve been following this thread with great interest. My position is quite different in that I am already stage IV. I have tried all three of the AI’s and the side effects have all been about the same. I’ve been doing this for 10 years without progression so I have some very powerful motivation to continue. Clearly, I am in a very different place.

    For those who are lower stage, I think the essential question is this: Will you feel bad, in any way, if you choose not to do hormone therapy and have a recurrence? I am not referring to a local occurrence but to metastatic disease. I know that statistics and studies may not cover all we want to know. So you have to make decisions based on what stats exist and how you will feel if you recur and are metastatic. That may not be a very science based factor for deciding on hormonal therapy but it’s an important question to ask yourself. Best to all.

  • muska
    muska Member Posts: 224
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    What worries me more than potential side effects, is the distrust of medical professionals and their recommendations.

    I admit I used to google more and question the prescriptions at the beginning of this “journey” until I realized no amount of online reading replaces years of specialized training and clinical practice.

    My recommendation is to listen to your MO recommendation, especially if you are higher risk.

  • alicebastable
    alicebastable Member Posts: 1,944
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    Excellent point, Muska. It's frightening that so many people think a quick poke around on Google somehow gives them more expertise than their oncologist has.

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,834
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    musks and AB,

    Isn't that the truth! The internet is wonderful but not for medical advice. Someone recently told me that she read an article, on line, saying people should not get COVID vaccines because then the virus will become stronger and new variants will arise. Well, viruses live to mutate. That's their MO and that's why we have flu shots that are tweaked yearly to accommodate variants. The author of the article? A veterinarian! Why bother listening to a human doctor 🤦🏻?

  • macdebbie
    macdebbie Member Posts: 65
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    Beesie, thank you for your post. How does someone who is not eligible for Oncotype because their tumor is smaller (3-6mm) find out their absolute and relative risk vs the potential risk reduction benefit from endocrine therapy?

    I'm just starting this journey and only know a small amount, but aside form the bothersome side effects - hot flashes, bone pain, dryness, etc., I can only imagine the mental stress of constantly worrying about a side effect that could be irreversible, very serious, or fatal - jaw bone degeneration, blood clots, uterine cancer, etc.

    So as you said, knowledge is key. But without the Oncotype # how is it possible to know?

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,834
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    macdebbie,

    While I can't really answer your question I did want to address some of the side effects you mentioned. Some like osteonecrosis of the jaw are rare. Although those of us on AI's are aware of this I don't think many of us dwell on this to the point of mental stress. We follow medical advice on ways to avoid it and that’sabout it. Yes, if you read through this forum you will read about how awful it is and that might lead you to believe it is more common than it is but almost everything you read on bco is slanted toward some of the worst possibilities. People who are doing well tend to post far less those who aren't. I have no experience with Tamoxifen but again, I would venture to guess that not too many taking it stress over low incidence side effects even those that may be permanently damaging.

    I understand that you would like some numbers so that you can do a risk vs. reward evaluation but as far as the scarier side effects consider how uncommon they are. Take care

  • beesie.is.out-of-office
    beesie.is.out-of-office Member Posts: 1,435
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    macdebbie, although less individualized than an Oncotype test (which actually assesses the genetic make-up of your cancer cells), you can try the two predictive models, PREDICT and CancerMath, that I mentioned and linked in my Aug 6, 2021 10:39PM post above. Since I didn't have an Oncotype score, my oncologist used PREDICT.

  • homemom
    homemom Member Posts: 830
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    I've been on Arimidex for 7 years and just made the decision to go another 3 to give me that extra protection for the next 10 years when I won't be taking it. In the beginning I had stiff ankles and feet when I first got up in the morning and would have to "walk it out". My hair is dryer and so is the vajayjay, but there are things you can use for those issues. I'd been dealing with hot flashes for a few years before I was diagnosed, but now I rarely have one.


    Moth that was an interesting read. I didn't even think about not being diligent in taking the meds. I have forgotten, but that is pretty rare.

  • dtad
    dtad Member Posts: 771
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    Hi everyone. This is the most controversial subject on this forum. I chose to refuse anti hormone therapy from the start. I have multi autoimmune disease which already impacts my QOL. But I also was 62 at the time of my diagnosis and stage 1. My only treatment was a bilateral mastectomy. I lost 30 pounds and try to exercise daily. I take several supplements to lower my estrogen naturally. So its been 6+ years and so far so good. However this is a very personal decision because everyone has different circumstances. I respect all decisions made. Good luck to everyone...

  • mavericksmom
    mavericksmom Member Posts: 1,158
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    dtad, I agree! I am tired of anyone who makes a judgement of anyone for their decision.

    I am GLAD I don't take an AI and I wish I NEVER took it !!!!! For me it was the RIGHT decision! Key word ME!

    When people are deciding what to do it is good to hear both sides. With my cancer (I had BC twice) I read what others had to say, I listened to what my doctors said, I researched, and then made my own choice, which happened to be NOT to take AIs.

    It didn't matter to me what anyone else did or wanted me to do, it only mattered what I decided is best for me.

    Those making the choice, consider your age, your type of cancer and grade, your scores, your doctor's recommendation and reasoning for their recommendation, and if you so desire, the comments made by members here. Then make the choice you feel is best for you! No one can predict the future, no one can reassure you your choice is best, but life if full of choices and looking back I spent way too much time contemplating what to do.

    I made my choice and I am happily living with it!