Has anyone here declined aromatase inhibitors?
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?
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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:
Thread: Doing Well on Aromatase Inhibitors
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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
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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.
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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.
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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.
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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.
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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.
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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.
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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.
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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.
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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.
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Hi. I’m currently debating on whether I plan to take anastrozole as well. I was diagnosed at 57 and was told that my risk of recurrence was 4% based on my oncotype score of 16. I have struggled with weight for the past 25 years and have actually gained 40 pounds in the last three years alone. I am clinically obese. I have several concerns about taking AIs as well. One is weight gain which puts me at a high risk of all kinds of health issues ranging from heart attacks to strokes to type 2 diabetes. I also suffer from arthritis and in pain. It seems to me that the risk/benefit ratio is unbalanced in the risk side, the risk of other health issues. My mother had Alzheimer’s at the age of 67 and suffered with her for 15 years and I know estrogen is important for brain health as well. On top of that, I just realized that the cash price of my medication is $400 a month which is not in my budget. So it appears that I am leaning towards not taking it. It’s definitely not an easy decision, but my doctor makes me feel like it is. Very frustrating.
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@jacquie.goggin - Hi, and welcome to our community. We're sorry you have to be here for this, but glad you found us.
Until other members post with their own experiences and advice, and since you mentioned the cost of medication being a barrier, we’d like to share a resource that might help. We have a section called Paying for Breast Cancer Care, which discusses common issues people face when paying for cancer care and offers some practical solutions. Hope it helps!
Feel free to reach out with any questions or updates. We’re here for you!
The Mods
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My situation is a little different than yours. I am 71 and my risk of recurrence without taking hormone blockers is 15%. So I'm a little older than you and have a higher risk. However, it appears I have an 85% chance of NOT having a recurrence, so I'm going with that. I believe there are more risks for me taking the drug than not. I already deal with joint pain and insomnia - I don't need any more. I am trying to feel better, not worse. And I refuse to take all the drugs they prescribe to "manage" the adverse effects. Hormone blockers also increase the risk of cardiovascular disorders. No thanks. We are all different and we all have to make our own decisions. What is right for one may not be right for another. But I am at peace with my decision to refuse aromatase inhibitors.
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Hi @jacquie.goggin, I don't take AIs for a variey of reasons but cost isn't one of them. If you google GoodRx anastrazole and input your zip code a coupon for a reasonable price should come up. It varies some by pharmacy and where you live but it's a good way of saving money. I have insurance but sometimes those coupons and online pharmacies like Eagle Pharmacy and Cost Plus Drugs have much better prices. I always cost compare any med I am prescribed. Good luck with your decision. Oncologists have a specific goal, prevent cancer recurrence, but many people have to consider other health issues as well.
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No one has told me what my risk is if I don’t take them. The nurse told me that the oncotype report says my risk is 4% if I take the AIs. So, I’m not sure what it is without them. I want to find a new medical oncologist but they all work for Texas Oncology and it feels awkward to change doctors in the same company.
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Yes, my sister told me to check out GoodRx and it’s only $2. lol. So, I can check that one off the list of “cons”. (Not sure how to reply to a specific person….I think I’m making new posts???). Thanks for the insights yall!
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Statistically AIs reduce your risk by about 50% so without them yours would be around 8%. If you look at the numbers the other way there would be a 92% chance of no recurrence without. Statistics don't predict what will happen to you, however, so you have to decide what your comfort level is. I find getting the opinion of other doctors I go to helpful since they are more aware of your cardiovascular risks and current health problems.
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