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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

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louisewalters | @louisewalters | 2 days ago
In reply to @lj22 "So here's an update on me. After 5 months of not wanting to start AI hormone..." + (show)
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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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@lj22 I am HER2 stage2, have had chemo, lumpectomy, radiation. I tried anastrazole, but oncologist switched me to letrozole. I am 7 months in and have pretty major side effects, but am afraid to stop. I may be switched again, but I wanted to tell you I am also being given Zometa every three months for two years. I am one year in and it is not causing me much grief. The only side effect is a slight fluey feeling the day after. I am afraid of osteoporosis so for me, it’s a good thing. Good luck!

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raebaby | @raebaby | 2 days ago
In reply to @brightlight66 "@raebaby AWESOME and Congratulations!!! May I ask what kind of breast cancer you had? I had..." + (show)
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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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@brightlight66 I was HERpositive , stage 2A, had a 2mm tumor removed , chemo and radiation. I had 3 lymph nodes removed. My menopause was so miserable with all the hormone fluctuations, I knew I couldn't handle no estrogen at all. I had arthritis in my lower back. I'm doing well. I find myself even striding if I am in a hurry. My cognition is fine for age 84.

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georgemc867 | @georgemc867 | 1 day ago

I have osteoporosis and was improving with Vit D, weight bearing/walking. After 9 months on Anastrozole, there was a notable decline in my density. I then agreed to Fosamax. Now that I am on Tamoxifen, I no longer must take Fosamax. Trying to find the sweet spot. I recently fell missing a step and cracked a kneecap that I broke and had two surgeries on 20 years ago. I was not due to osteoporosis and most likely not due to the short use of Fosamax. Things happen.

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