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Has anyone here declined aromatase inhibitors?

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I am 70 and recently had a lumpectomy for stage 1 invasive ductal carcinoma, 7mm. No lymph nodes involved. My oncologist prescribed anastrozole but I refuse to take it. I've done my homework and it's a quality of life issue for me. I already have mild arthritis, osteoporosis and thinning hair. I don't need more of that and I sure don't need high blood pressure, high cholesterol, heart disease, blood clots, diabetes or stroke. I refuse to take any meds to "manage" the side effects. I don't want to suffer for something that may never even happen. If it does recur, I will deal with it then. I have a horror story from taking Fosemax 10 years ago and will never put anything in my body again without thorough research. Aromatase inhibitors are a hard no. Anyone else not taking them?

Comments

  • moderators
    moderators Posts: 8,287
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    Hi @saleen19 and welcome to Breastcancer.org!

    We're so very sorry for the reasons that bring you here, but we're really glad you've found us and decided to post. You're sure to find our amazing community a wonderful source of advice, encouragement, information and support — we're all here for you!

    While this decision is truly individual, please remember that not everyone has the same experiences with AIs. Some folks have minimal effects, some have more serious - but manageable - effects, and some have debilitating effects, though that is more rare. You're sure to hear the gamut of stories here. Keep also in mind that if you're miserable on one AI, you can talk to your doctor about switching to anoher AI to keep your risk of recurrence as low as it can be.

    We do have some threads and information you might find helpful while you're making your decision:

    Thread: https://community.breastcancer.org/forum/78/topics/790338?page=1805#post_5764372

    Thread: Doing Well on Aromatase Inhibitors

    Page: https://www.breastcancer.org/treatment/hormonal-therapy/refusing-hormone-therapy

    Page: https://www.breastcancer.org/treatment/hormonal-therapy/aromatase-inhibitors

    We're sure others will be by soon to weigh in with their thoughts. We hope this is all helpful to you! Please let us know how we can continue to help you.

    —The Mods

  • saleen19
    saleen19 Member Posts: 14
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    Dear Moderator - Thank you for your concern, but I've already decided. No aromatase inhibitors for me. First, I'm extremely sensitive to meds and will experience all the side effects and then some. But most importantly, even if some miracle happened and I didn't feel the effects, the meds cause internal damage. They adversely affect the bones, heart, liver, blood pressure, cholesterol levels, blood sugar, joints - basically they accelerate the aging process. So my mind is made up and I would love to hear from others who have refused or quit AIs. Also any diet or lifestyle changes they may have made to reduce the risk of recurrence.

  • maggie15
    maggie15 Member Posts: 1,081
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    Hi @saleen19 , I also declined AIs for many of the reasons you mentioned but chiefly because I have a precancerous esophageal condition for which estrogen is protective. I have always exercised and followed a relatively healthy diet. Due to other health issues my exercise is now limited to walking on relatively flat paved surfaces but I do walk every day. According to my MO my recurrence risk is increased by about 8% but I understand and accept that. If I do have a distant recurrence I will take AIs. It’s a matter of finding the balance that is right for you and making a decision you won’t regret no matter what the future holds.

  • sdianel
    sdianel Member Posts: 23
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    I was diagnosed in 2017, small lump, lumpectomy & radiation. I tried aromatase inhibitor off and on for one year and told the Oncologist I couldn't do it anymore. I felt like I was 100 years old. I was 69. I too am sensitive to medications and had a bad reaction to Fosemax. My doctor refused to believe it was caused by the Fosemax. I only took one pill and never took another. In December 2023 I was diagnosed with Angiosarcoma a rare & aggressive breast cancer caused by the radiation I had in 2017. I've had chemo & double mastectomy where they got clear margins and will have to be monitored with CT & PET scans often. My Mom was on Tamoxifen for 5 years and it caused blood clots.

  • exbrnxgrl
    exbrnxgrl Member Posts: 5,072
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    ”It’s a matter of finding the balance that is right for you and making a decision you won’t regret no matter what the future holds.” -maggie15

    For me, this is the bottom line. No one can say whether one will recur or not and as long as a person understands that and will not feel regret, not taking meds is always a choice.

  • saleen19
    saleen19 Member Posts: 14
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    Thank you. This is good to know. Even if my recurrence risk was 10%, that still means there is a 90% chance it won't recur. For me, taking the aromatase inhibitors poses a greater risk of all sorts of other health problems.

  • saleen19
    saleen19 Member Posts: 14
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    Thank you for sharing. I find aromatase inhibitors to be riskier than a recurrence. There is a small chance of a recurrence for me, but a 100% chance of side effects and perhaps permanent damage from aromatase inhibitors. The doctors downplay these risks. I have a friend who had to have her heart valve replaced after taking Arimidex. I have heard from many people that aromatase inhibitors speed up the aging process. I'm 70 and it is already going fast enough. AIs are a hard "no" for me.

  • saleen19
    saleen19 Member Posts: 14
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    Thank you for sharing. I find aromatase inhibitors to be riskier than a recurrence. There is a small chance of a recurrence for me, but a 100% chance of side effects and perhaps permanent damage from aromatase inhibitors. The doctors downplay these risks. I have a friend who had to have her heart valve replaced after taking Arimidex. I've heard AIs speed up the aging process, and at 70, it is going fast enough. AIs are a hard "no" for me.

  • abigailj
    abigailj Member Posts: 104
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    I was 62 when diagnosed and took them for 3 months awaiting my surgery (early days of COVID) and it was awful. Refused them afterwards. Onc said 3% risk of recurrence/Mets with them, 6% without. At peace with my decision.

  • saleen19
    saleen19 Member Posts: 14
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    Thank you for sharing. I agree, with your risk so low, it's not worth torturing yourself for 5 years for something that may never happen. I'm at peace with my decision, too.