1. < Breast Cancer

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

Posted by lj22 @lj22, Mar 30 11:08am

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.

guillermina | @guillermina | Apr 20 6:18pm
In reply to @colleenyoung "A note about natural products as a substitute for manufactured aromatase inhibitors. See the commentary -..." + (show)
@colleenyoung

A note about natural products as a substitute for manufactured aromatase inhibitors. See the commentary
- Review on Natural Agents as Aromatase Inhibitors: Management of Breast Cancer https://pubmed.ncbi.nlm.nih.gov/37861041/

"A variety of natural compounds have been investigated for their capacity to inhibit aromatase activity and lower estrogen levels. ... It has been demonstrated that by decreasing estrogen synthesis, they can slow the growth of breast cancer cells that are dependent on estrogen. However, the clinical evidence supporting their efficacy and safety in breast cancer treatment is inadequate. More research is required to investigate the therapeutic potential of natural medicines, such as aromatase inhibitors, in treating breast cancer. The clinical trials are required to assess their efficacy, appropriate doses, and potential interactions with other therapies. In conclusion, natural aromatase inhibitory drugs are promising adjuncts in the treatment of hormone receptor-positive breast cancer. Their clinical value and safety profile, however, require additional investigation."

More and more cancer centers and oncology specialists are open to discussing and integrating complementary medicine in programs called Integrative Medicine or Integrative Oncology. Integrative medicince is offered at many cancer centers of excellence, including Mayo Clinic.

Here's a link to more information about Mayo Clinic's Integrative Medicine programs
– Integrative Medicine and Health https://www.mayoclinic.org/departments-centers/integrative-medicine-health/sections/overview/ovc-20464567

As always, when considering integrative, alternative or complementary therapies, talk to your oncologist. Never disregard professional medical advice or delay in seeking it because of something you have read on the community.

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I also have decided not to take aromatase inhibitors. I have fibromyalgia, osteopenia, and atrial fibrillation (afib). I’ve had a stroke that was attributed to afib. At 86 I was diagnosed with stage 2 invasive lobular cancer. This cancer grows flat and is a little harder to detect. I had a screening mammogram and was called back for a diagnostic mammogram. I had a lumpectomy of my right breast (the surgeon couldn’t clean edges) followed by 21 radiation sessions. I read about a FES PET-CT scan FES PET-CT for Breast Cancer Services - NYC & Westchester | ColumbiaDoctors - New York | ColumbiaDoctors. I asked my oncologist to order this procedure. I live in Virginia and had to travel to Duke University in North Carolina to get one. The results were good. No cancer in other parts of my body. My oncologist said that I can have this screening annually.

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1 reply
judithkk | @judithkk | Apr 22 12:16am

Hello/ my dr. did put me on 20 mg but after horrible side affects began almost immediately, I told him it was something I was no longer willing to take. I referenced the studies I had read regarding lower doses, my particular tumour and emphasized quality of life was my biggest concern at 71. He ultimately said it was my decision. I am not with the Mayo clinic. A lot of research and thought went into my decision but I feel it was the right decision for me.

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1 reply
guillermina | @guillermina | Apr 22 11:55am
In reply to @guillermina "I also have decided not to take aromatase inhibitors. I have fibromyalgia, osteopenia, and atrial fibrillation..." + (show)
@guillermina

I also have decided not to take aromatase inhibitors. I have fibromyalgia, osteopenia, and atrial fibrillation (afib). I’ve had a stroke that was attributed to afib. At 86 I was diagnosed with stage 2 invasive lobular cancer. This cancer grows flat and is a little harder to detect. I had a screening mammogram and was called back for a diagnostic mammogram. I had a lumpectomy of my right breast (the surgeon couldn’t clean edges) followed by 21 radiation sessions. I read about a FES PET-CT scan FES PET-CT for Breast Cancer Services - NYC & Westchester | ColumbiaDoctors - New York | ColumbiaDoctors. I asked my oncologist to order this procedure. I live in Virginia and had to travel to Duke University in North Carolina to get one. The results were good. No cancer in other parts of my body. My oncologist said that I can have this screening annually.

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Subsequent to my scan at Duke University I discovered that “The Society for Nuclear Medicine & Molecular Imaging” has a web site that lists national locations who do FES PET imaging. I’ve also found out that the Sentara hospital system does these scans in Southern Virginia. This scan is for people dealing with estrogen/progesterone positive breast cancer.

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vegada | @vegada | Apr 23 5:42am
In reply to @peggydobbs "To Flatland: My cancer was estrogen positive, progesterone negative, HER2 negative, Stage 1a DCIS with invasive..." + (show)
@peggydobbs

To Flatland: My cancer was estrogen positive, progesterone negative, HER2 negative, Stage 1a DCIS with invasive cells. I tried letrozole, exemestane full dose daily, exemestane full dose 3 days a week--all gave me terrible tinnitus. Tried anastrozole full dose daily--so far no problems. Ribociclib added 1 month ago because of Oncotype score of 29. Still no problems.

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I had an Oncotype of 29 with my stage 1a breast cancer that was ER/PR + and HER2- but I was never offered Ribociclib. Did your doctor prescribe Ribociclib because of your Oncotype score? Also did you have chemo? Lastly, how long have you been in remission? Thank you for your help.

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1 reply
celestebradham | @celestebradham | Apr 23 7:53am

FES PET. Very interesting. Thank you for the resource. Looked it up and read. I’ll be asking my oncologist today- if this can replace diagnostic mammogram and for any other information.

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peggydobbs | @peggydobbs | Apr 23 7:57am

Ribociclib (Kisqali) was approved for high risk early stage breast cancer in Sept 2024. Before that it approved only for metastatic disease. See link below.

When I was initially diagnosed (Aug 2024) I wasn't given Oncotype test--even though my cancer was grade II-III, stage 1a, DCIS with invasive cells, ER+ PR-, HER2-. The first cancer center told me their policy was no Oncotypes for those over age 70. I wasn't offered chemo, had surgery, had radiation, then AIs.

In Jan 2025, I went to a different cancer center, specifically to get Oncotype done. Oncotype score 29. Started ribociclib March 2025. As for remission, I wouldn't say I've gotten there yet! You don't say when you were treated. Were you offered chemo? Maybe Ribociclib wasn't yet approved for your cancer.
https://www.fda.gov/drugs/resources-information-approved-drugs/fda-approves-ribociclib-aromatase-inhibitor-and-ribociclib-and-letrozole-co-pack-early-high-risk

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peggydobbs | @peggydobbs | Apr 23 7:59am
In reply to @vegada "I had an Oncotype of 29 with my stage 1a breast cancer that was ER/PR +..." + (show)
@vegada

I had an Oncotype of 29 with my stage 1a breast cancer that was ER/PR + and HER2- but I was never offered Ribociclib. Did your doctor prescribe Ribociclib because of your Oncotype score? Also did you have chemo? Lastly, how long have you been in remission? Thank you for your help.

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To vegada: see my answer above. PeggyDobbs

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sealskin | @sealskin | Apr 23 11:28am

Hi! Same! Ah the gold standard treatment doled out to all of us with a big dose of fear. I had no support. I did radiation which has been destructive to a tear duct that had to be reconstructed. I had chose not to take Anastrozole but was encouraged by an online survivor so I started Anastrozole 6 months from lumpectomy Sept. 2022. I took it for 1.5 years and quit because of many side effects that destroyed all quality of life-it was poison! And I noticed last March 2024 1/2 my beautiful hair was gone. And today, a year later my hair has thinned at a fast rate the last 4 months and I will be bald in 4 months if it doesn’t stop thinning. My hair has just stopped growing- what’s left is still silky and beautiful. Quality of life and my cognitive abilities and sleep returned after about 4 months of stopping the AI. The bone and muscle pain, inability to sleep were extreme. I was letting fear rule and finally chose quality of life. If cancer returns I’ll deal with it then. I have enough on my plate as it is. Good luck!

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1 reply
sealskin | @sealskin | Apr 23 11:34am
In reply to @judithkk "Hello/ my dr. did put me on 20 mg but after horrible side affects began almost..." + (show)
@judithkk

Hello/ my dr. did put me on 20 mg but after horrible side affects began almost immediately, I told him it was something I was no longer willing to take. I referenced the studies I had read regarding lower doses, my particular tumour and emphasized quality of life was my biggest concern at 71. He ultimately said it was my decision. I am not with the Mayo clinic. A lot of research and thought went into my decision but I feel it was the right decision for me.

Jump to this post

Good choice! I tried 10 mg anastrozole for 1.5 years and quit. It was poison. I didn’t sleep for a year and half, lost most my hair, had horrific bone and muscle/joint pain. My heart hurt, and I lost cognitive abilities. It took 4 months for the horrible symptoms to abate! But I doubt I will ever get my beautiful hair back. All the info out there are lies or just hidden.
Proud of you! Cheers to health and ❤️ love!!!

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part | @part | Apr 23 12:20pm

I had ER + DCIS with negative sentinel nodes 22 yr ago. Had to have mastectomy to get clear margins. I was 47 yr old at the time. I opted out of tamoxifen at the time. Just had core needle biopsy on a growth in same breast yesterday for an irregular shaped echogenic mass. Could be fat necrosis. The FES PET scan is new to me. Right now any of us can go to ChatGPT and log in with google account to use it. It won’t save your questions because temporary and using free but found it remarkably easy to use.

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