Any long-term success stories from those NOT taking hormone therapy?

Posted by lj22 @lj22, Mar 30, 2025

Hello all, I'm fairly new to this forum. Have previously described my case, early 60's, Stage 1, HR +, Her2-, lumpectomy and now radiation. Soon, I'll need to make a decision about whether to take hormone therapy. I've ruled out Tamoxifen, and if AI (Anastrozole), I would need Zometa due to osteopenia. I am otherwise healthy and take no other daily meds. I am also looking into natural AI's in foods and supplements. (Have reviewed Predict model, showing relatively high survival rates, but unclear on recurrence rates from his model.)

Anyone in a similar situation who has decided not to take AIs, and is doing well long term? Would like to hear your experiences. Many thanks. LJ

Interested in more discussions like this? Go to the Breast Cancer Support Group.

Profile picture for Miriam, Volunteer Mentor @mir123

@songfamily2025 It's a good question but I have no clear answer. I'm guessing you are right as regards ten years. With each passing year, my oncologist explained, my life expectancy looks better. The two year and then the five year mark both bode well. I don't mind being on letrozole at all. My bone density is still normal. The truth is, I'm very grateful this drug is keeping me going. I'm almost 72, and other co-morbities have made me face mortality in a way that isn't bad at all. I'm really enjoying life, a day at a time. Wishing you all the best, too, in every arena.

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@mir123 Thank you for sharing that your bone density is still normal. I truly believed that everyone who took AI's lost bone density. I am on Anastrozole and worry about losing bone density and you have given me hope!
(Dexa scheduled for July 2026)

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@chancyb Thank You for responding best of good luck great outcomes on our journeys!!

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Profile picture for Miriam, Volunteer Mentor @mir123

@brooklyn22 I hope I can explain what I know. You should ask your oncologist for the percentage of risk reduction for the Aromatase Inhibitors with your specific cancer. Let's say there is a 50% improvement with the drugs. But then you need to know what you risk of recurrence/spread actually is. Let's say it is 2%, so the risk reduction is very minor. But if it is 80% the risk reduction could be critical. As I'm no doctor I don't know the exact answer--but your oncologist should provide you with the info you need. It will vary person by person. Also, consider if you re ok with starting an Aromatase Inhibitor and seeing how you do. (I think from your comments you have not yet started?) You can always start and then tell your oncologist you are stopping--or ask to try a different one. I gather about half of women have few or no problems. I've been on letrozole for 3 1/2 years without side effects and good cancer control. I hope you can get some peace mind with this decision. (I found decision making the hardest part, for me, of the process).

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@mir123 thank you! I’m still considering all facts - great for you no side effects!!! w letrozole good to see this.

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Profile picture for salamander @salamander

Only been two years but the doctors say it effects more long term 5 to 15 years increase recurrance if I don’t take anti-estrogen. Scary - but I know I can’t take them. Some have no issues but my choice.

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Hi, I was in a similar situation, after lumpectomy and radiotherapy I was offered Anatrazole, tried for months and truly was a basket case, couldn't even put a sentence together, I was 64 at the time. Stopped the meds, must say my support team in Ireland were terrible, made me feel bad about refusing. Had to really stand firm and say quality of life was more important to me. I'm almost 4yrs now without drugs and feeling great. All mammogram results are clear. Everyone is different but I happy..clean diet and exercise. Diet little sugary foods, lots of veg and low sugar fruits. Very little fatty foods and virtually no processed food. Hope this is of some support to anyone finding the meds made the ill or in my case suicidal. Best of luck 👍

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Profile picture for siobhanmary @siobhanmary

Hi, I was in a similar situation, after lumpectomy and radiotherapy I was offered Anatrazole, tried for months and truly was a basket case, couldn't even put a sentence together, I was 64 at the time. Stopped the meds, must say my support team in Ireland were terrible, made me feel bad about refusing. Had to really stand firm and say quality of life was more important to me. I'm almost 4yrs now without drugs and feeling great. All mammogram results are clear. Everyone is different but I happy..clean diet and exercise. Diet little sugary foods, lots of veg and low sugar fruits. Very little fatty foods and virtually no processed food. Hope this is of some support to anyone finding the meds made the ill or in my case suicidal. Best of luck 👍

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@siobhanmary thank you so much for sharing your story. Very happy to hear you are doing well. Good advice to eat as clean as possible; I need to continue working on that.

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Profile picture for siobhanmary @siobhanmary

Hi, I was in a similar situation, after lumpectomy and radiotherapy I was offered Anatrazole, tried for months and truly was a basket case, couldn't even put a sentence together, I was 64 at the time. Stopped the meds, must say my support team in Ireland were terrible, made me feel bad about refusing. Had to really stand firm and say quality of life was more important to me. I'm almost 4yrs now without drugs and feeling great. All mammogram results are clear. Everyone is different but I happy..clean diet and exercise. Diet little sugary foods, lots of veg and low sugar fruits. Very little fatty foods and virtually no processed food. Hope this is of some support to anyone finding the meds made the ill or in my case suicidal. Best of luck 👍

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@siobhanmary I also was in a very similar situation. Stage one ER+ H ER2 negative and had a lumpectomy and five intense sessions of radiation. I declined the aromatase inhibitors. We have a lot of medical people in our family who supported the decision. With the advances in AI and medicine, many new treatment options are on the horizon, I too chose quality of life and feel great about my decision. However, I am 69 and not sure if I would have made the same decision earlier. Things are great at almost 2 years out and for me it was without doubt the right decision. It's an individual choice and we all need to be supportive of each person's individual choices. Good luck, everyone.♥️♥️♥️

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I've mentioned here t hat I refused aromatase inhibitors after my breast cancer treatments. I'm 5 years out now at the age of 84 and myblood work shows that I have no signs of a tumor.

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Profile picture for raebaby @raebaby

I've mentioned here t hat I refused aromatase inhibitors after my breast cancer treatments. I'm 5 years out now at the age of 84 and myblood work shows that I have no signs of a tumor.

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@raebaby AWESOME and Congratulations!!! May I ask what kind of breast cancer you had? I had invasive lobular and too nervous to refuse AI's although I'd like to. Still hanging in here and taking them to reduce recurrence. : )

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So here's an update on me. After 5 months of not wanting to start AI hormone therapy, I finally started Anastrozole. Basically, my oncologist pointed out the this reduces not just new cancer in the other breast, but distant recurrence as well (metastatic cancer-- lungs, brain, bone, etc). That scared me. I am now 7 months into the drug, and I do have side effects-- joint pain (hip, knee), more frequent headaches. But my biggest fear is still the erosion of my bone health. I'm planning on getting my next Dexa scan sooner than 2 years (even if I have to pay for it) to closely track if this drug is damaging my bones. I have advanced osteopenia in my lumbar spine, and really nervous about it progressing to osteoporosis, given that I have several friends with osteoporosis, and they have fallen, broken bones, and needed surgeries. I don't predict that I will stay on this med for the full 5 years, and I am also afraid of Zometa infusion, which I understand isn't tolerated well by some.

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In the past, breast cancer was treated with surgery and radiation only. Many women survived. Adding aromatase inhibitors and Tamoxifen increased rates of survival. But AIs & T have side effects. No one is required to take them.
My advice: if one AI gives you bad side effects, try another before giving up altogether. For me, Letrozole was awful and exemestane was OK. If you have bone loss, find out what kind of person doesn't tolerate Zometa before refusing it. After all, you may be fine on it.

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