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Does anyone refuse hormone therapy altogether?

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  • farmerlucy
    farmerlucy Member Posts: 596
    edited September 2017
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    I slogged it out for four years. Some may have few side effects but that was not the case for me. I went into it expecting no side effects. But whoa - start messing around with my hormones and bad things happen. It came at a cost - ooph, then severe joint issues, then back to Tamoxifen and then a hysterectomy for post meno bleeding. I finally decided enough was enough. Only time will tell if I made the correct decision. I plan on living like it is gone until and if I'm proven wrong.

  • GreenEyes81
    GreenEyes81 Member Posts: 66
    edited September 2017
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    I am considering refusing. I am for sure refusing a hysterectomy. I'm 36, I just can't see that all the side effects temp. or perm. for my life is a good quality of life balance for me.

    My MO feels that my cancer is genetic even though genetic testing came back negitive. He says, "It's genetic, we just don't know what gene is mutated for you". So, for me I feel having my 2nd breast removed will have a larger impact on reducing my risk and only healing as a "side effect".

    Granted...I am waiting on my onco score now. Hoping it is low as the MO is expecting. Anyone have links to how they can "lean" towards a higher or lower score ahead of time?

  • marijen
    marijen Member Posts: 2,181
    edited September 2017
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    GreenEyes, it's a hard decision to make. I hope you oncotype score is next to nothing. Please let us know when you find out. I only made it 28 months on letrozole, don't want to try anything else, because they decrease estrogen in the whole body, or so I believe. But for sure they all have SEs. I don't know much about the Oncotype because I didn't get to have one, no Ki67 either. No primary tumor - occult. I did have radiation that didn't go so well. Best wishes.

  • Artista928
    Artista928 Member Posts: 1,458
    edited September 2017
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    I think it's important to note that while many experience SE's that there are many in the doing well on AI thread who don't or have very manageable ones. Doesn't hurt to try, can always stop like marijen and I did. Many are wanting to try it but are afraid from reading bad experiences. Don't let that alone stop you from trying. Talk to your onc, learn about your risks. Mine are very high so it's a no brainer for me to at least be on Tamoxifen which thankfully gives me 0 se. I'm menopausal so I'm not about to say my occasional warm flushes are from it. Chances are since my mother has warm flushes at my age, I would any way. Make informative decisions for you, based on your profile. Onc score only tells you if you'd be a good candidate for chemo. If that's past then no point in doing it. Ki67, size of tumor, lymph nodes involved. stage to some extent, etc-- need to ALL be taken into account.

    GL to all.

  • k48
    k48 Member Posts: 1
    edited October 2017
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    I am 69 and had been on HRT for 20 years. When I got diagnosed I stopped the HRT. 8 months out and did

    surgery and radiation. I found a website that allowed you to enter your type of cancer and other variables and

    what the chances are of dying from BC. Mine said I would die 6 months earlier without AI's. I already have

    bad arthritis and just stopping what I took (hrt) for so many years has made my joints horrible. Fingers look twisted

    knee pain, back pain, you name it! The positive didn't outweigh the negative for me, but we are all different.

  • moderators
    moderators Posts: 8,086
    edited October 2017
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    Hi k48-

    Thank you so much for sharing your story with us. We're sorry that your arthritis has gotten worse! It's so true, every person is different. We hope you find some relief or a way to manage your pain.

    The Mods

  • dtad
    dtad Member Posts: 771
    edited October 2017
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    k48....sorry you are suffering. I'm sure its from the lack of estrogen after coming off HRT. I was in a similar situation. I was 62 when diagnosed and on HRT for 6 years. My MO at a major NYC university hospital wanted me to take an aromatase inhibitor but did tell me that coming off HRT was a treatment in itself. My health at the time and presently is not good due to a debilitating autoimmune disease and I wasn't willing to compromise my QOL any further so I declined the aromatase inhibitor. I have lost 30 pounds and try to exercise daily. That has been shown to lower recurrence rates by 40 percent. I also take several supplements to lower my estrogen levels more naturally. So far so good. I'm not advocating this for everyone and I'm not against anti hormone therapy in general. It was just not right for me. Good luck to all navigating this complicated disease.

  • Raque510
    Raque510 Member Posts: 15
    edited October 2017
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    Hi Everyone,

    This is only my 2nd post, though I have been "lurking" these threads since January! But, I am in need of some direct experiences with hormonal therapy as I am at that point in my treatment!

    Diagnosed at 35, stage 3A IDC, 3 of 9 nodes removed tested positive. Tumor was only 5% positive for estrogen. No progesterone, no HER2. No family history of women getting BC before menopause, but one known instance of BC on mom's side, and at least 2 known instances on dad's, all post-menopause. There's an unfortunate wealth of hormone/endocrine-related health issues at every life stage for most women on maternal side. NO genetic component has been found thus far for me (incl. negative for BRCAs & CHEK2). Mom had full hysterectomy at 42 due to a precancerous fibroid. But, was then put on hormone REPLACEMENT therapy to combat menopause symptoms (back when this was common treatment). No other cancers in immediate family (mom, dad, sister). So, my BC is considered "environmental."

    I have taken the conventional Western medicine route so far-- dose-dense AC & T, and 27 rounds of rads, and I've been chemopausal since starting Taxol (now 3 months out from chemo). The next curated step is supposed to be AI's and ovarian suppression. Now that I have this bottle of pills on my nightstand (Aromasin) and a standing appt for a Lupron injection (neither of which I have started), I have become paralyzed by indecision! I am 36 now. . . and something feels very wrong about shutting down my ovaries and blocking all estrogen at this point in my life.

    I am willing to try natural methods of estrogen reduction, and have been making dietary and other lifestyle changes in hopes of lowering my risk of recurrence. Those are things I'm comfortable with--that I have some CONTROL over. . . The side effects of AI's and OS just sound like staying on this cancer-train for an indefinite amount of time and I want to (read: need to) get off this train and get back to living.

    I'm all but desperate for wisdom--from anyone but especially women who have gone through aggressive BC before 40. The age-bracket seems to make a huge difference. Thanks!

  • pupmom
    pupmom Member Posts: 1,032
    edited October 2017
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    Raque510, so sorry you find yourself here at such a young age. It's totally unfair. That said, refusing treatment won't get you off the cancer train. In fact, at Stage III, Grade 3 with 3 nodes, refusing Als may do just the opposite. Sorry to be blunt, but I'm sure you've heard it before. However, if you really are only 5% estrogen positive, there may be an argument for not absolutely needing Als. If I were you, though, I would take every precaution I could. You have so much life ahead of you! Best wishes!

  • Michelle_in_cornland
    Michelle_in_cornland Member Posts: 1,233
    edited October 2017
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    I agree with what Pupmom suggests. Also, you might want to take a look at the individuals on the Stage III Forum and see what meds they took. Is there any way to take Tamoxifen? You would have to monitor your uterus and ovaries for endometrial hyperplasia and cysts.

  • ghenier27
    ghenier27 Member Posts: 2
    edited February 2020
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    Hello group, I was born with spina bifina and it is a spinal cord defect. I was diagnosed with stage 2 invasive carcinoma and in my mammogram shown no signs of node involvement but when they did the surgery, there was traces of cancer cells in 2 of the nodes and took out 23 more nodes with no traces of cancer in them - that was in August 2019. And had my first chemo on November 18th, 2019 and since then life has been very hard. While the surgery to remove my right breast was easy. I had 2 chemo drug reactions that eat the first and second layers off the back of my left thigh and will not let my nephrostomy tube stay in place for more than 20 days. For those that don't know, they are usually replaced every 90 days I've had about 12 nephrostomy tube replacements since November 25th. I am terrify to start hormone pill therapy because most medical oncologist haven't treated someone like me before and they are in uncharted areas. I am 42 years young and I will tell you, I am sorry that I ever took that dose of chemo. I was told prior that with just taking radiation I had an 83% of being cured and with chemo it raised it to 93%. I had thought about getting my ovaries removed to help lower the estrogen in my body. I would appreciate any comments, or suggestions you may have. Thanks for reading

  • moderators
    moderators Posts: 8,086
    edited February 2020
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    Welcome, ghenier27! We're so sorry you find yourself here, and we're sorry to read what you've been through! What an immense struggle you've had - we certainly understand your hesitations in regards to the next step of your treatment. Hopefully another member here can offer some insight and advice, or share their own experiences. You've definitely come to the right place for support!

    The Mods

  • dtad
    dtad Member Posts: 771
    edited February 2020
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    ghenier27...I'm so sorry you are going through this. To answer your question yes there are those like me that refused anti hormone therapy from the start. I cannot speak for others but I had several reasons not to take it. The main reason was because I have multiple autoimmune disease and my QOL is already very compromised. However I was 62 a the time of my diagnosis and stage one. I can't say what my decision would be under different circumstances. My best advise to you is to get to a major university teaching hospital if you are not a one now. Hope this helps. Good luck and keep us posted.

  • Yogatyme
    Yogatyme Member Posts: 1,793
    edited February 2020
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    ghenier, like Dtad, I also refused an AI from the start. There are several reasons for my decision and 68 at dx. I’m not sure what I might have decided at a younger age. I can certainly understand your concerns given the spina bifada and I would like very frankly with my providers and do my own research. It’s a difficult decision and I hope you are able to get good info.

  • Prue1963
    Prue1963 Member Posts: 2
    edited February 2020
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    Hi I am 56 years old and was diagnosis with stage 1A breast cancer grade 3 no lymph nodes clear margins been on AL for a year and a half having alto of side effect change me to tamoxifen still having side effect. Really thinking about stop taking it. I also had radation and I had Er+/PR+ HER-

  • Yogatyme
    Yogatyme Member Posts: 1,793
    edited February 2020
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    This is a very difficult and PERSONAL decision. We need to do our own research and ultimately do what we believe is the right thing for us....regardless of others opinions. Taking an anti-hormonal does not guarantee you will not have a recurrence and not taking one doesn’t guarantee you will. I hear “why wouldn’t you take it” and flip the coin, “why would you take it” in discussions about this and ultimately we need to decide for ourselves and respect others decisions for themselves. When the risk of recurrence is low, some people will decide to toss the dice and it makes sense to them and doesn’t have to make sense to anyone else. No decision is risk free, so decide for yourself

  • edj3
    edj3 Member Posts: 1,579
    edited February 2020
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    Piling on to what Yogatyme said.

    My decision is right for me. Someone else in my shoes will decide that yes, tamoxifen is worth whatever the side effects end up being. Both are valid decisions as long as the person making them has thought it through and is good with where she/he is.

    So asking us what we've done isn't going to be that "think it through" process. It's just crowd-sourcing and (frankly) being a bit lazy. The decision for you is yours and yours alone.

  • lisey
    lisey Member Posts: 300
    edited February 2020
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    crowd sourcing is one of the smartest ways to help understand ideas and symptoms. In fact, AI uses crowd sourcing to solve many problems. I don't think crowd sourcing is lazy at all. It's just a modern approach to siphoning information.

    I have been on Tamoxifen for 4 years with very little side effects. My hair is thinner... that's about it. I'll continue taking tamoxifen for another 6 years, it's like a sugar pill to me.

  • edj3
    edj3 Member Posts: 1,579
    edited February 2020
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    Lisey, it may be that we have different opinions or it may be that I wasn't clear.

    Crowd sourcing ideas, yes--great idea.

    Crowd sourcing so others can make tough decisions for you (aka go with what the majority says, and don't carefully consider what you truly want)--lazy.

  • ghenier27
    ghenier27 Member Posts: 2
    edited February 2020
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    In my own reply to why do I not want to do hormone therapy? I have always gone to the top medical centers in this country. BUT NO ever mention that chemo would not let my nephrostomy tube stay inside my kidney. Usually replacements are done every 90 days. I have had 12 since November 25, 2019 -almost a years worth. It isn't fun to have a knot at the end of this tube work itself out of the kidney and come completely out of my body every 15 to 20 days. It is cause by the after effects of 1 dose of chemo. Doctors tell me that things will get back to normal BUT don't know when. I can't tell you how my skin looks, the pain. And not to mention that it eat the first and second layers of the skin on the back of my left thigh. I am afraid that if I take the hormone pills it will add more problems to the skin breakdowns and problems with my nephrostomy tube. I do realize that I am a high risk of cancer returning but is it worth the chance of all the other problems I already have or adding more to them.

  • edj3
    edj3 Member Posts: 1,579
    edited February 2020
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    ghenier27 -- ow! Just reading your description of what's going on with your kidney makes me cringe on your behalf. That's awful :(

  • Prue1963
    Prue1963 Member Posts: 2
    edited February 2020
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    Just was wondering what other women were doing..If there was a lot of other women out there having the same problem. Joint muscle pain,severe leg cramps numbness and tingling in my extremities. Do not get a lot of help from my oncologist about this just give me more meds to take to help the side effect.. I do not think I am lazy just looking for a little support maybe this is not the place

  • edj3
    edj3 Member Posts: 1,579
    edited February 2020
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    My story is a little different--I did try tamoxifen but by the 10th day, my heart rate spiked to dangerous levels on my runs (like 189). I've been a runner all my life and have heart rate data going back for years so yes, this was an anomaly. The only thing new in my world was the tamoxifen.

    I had also noticed hot flashes (which I didn't get during menopause), insomnia again (the biggest menopause issue I had), and just yucky vaginal discharge.

    But it was the heart rate issue that concerned me. So I stopped after 3 weeks of 10 mg a day. You may already know this but tamoxifen has a long half life and takes four to six weeks to fully leave your body. For me it was the entire six weeks. But after that I had no heart rate issues on my runs, the insomnia is gone and thankfully so is that gross discharge.

    Like you, I was offered other drugs to counter the side effect which just seems insane to me. Here, lets give you a drug that may help prevent recurrence of your breast cancer. Oh it's got nasty side effects? Well, lets give you MORE drugs that also have side effects. Nope, not for me.

    But that's my choice and where my head is. Who knows if I'd been grade 3 or had had to have chemo, the landscape for me might be very very different.

    So that's why I say it's such a personal decision and one you really need to consider carefully. My decision might not fit your situation at all.

  • sweetgirl19
    sweetgirl19 Member Posts: 3
    edited February 2020
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    Hello dtad, I was particularly interested in your post because you mentioned you have autoimmune issues that already affect your quality of life. I do also. I am 74 and recently dx, Nov, 2019. ILC, grade 1, stage 2a, tumor 2.5 cm. clear lymph nodes and margins. ER/PR+ HER- No genetic markers. I elected for a mastectomy to avoid radiation. Oncotype 3. I have tried starting letrozole but having side effects that I think are exacerbated by my immure disorder. I will try all the hormonal options to see if I can tolerate one, however, I will need to weigh quality of life against risks. Something I have had a lot of practice at over the 22 years of auto immune issue.


  • jessie123
    jessie123 Member Posts: 134
    edited February 2020
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    Raque510 --- Have you considered getting a second opinion from an Oncologist that specializes in breast cancer? You are only 5% estrogen positive and 0% progesterone. A second opinion may not recommend the pills for you. Then you can even go for a third opinion as the tie breaker.