Any long-term success stories from those NOT taking hormone therapy?
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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I read something like that a while ago and was surprised that the percentage of resistance is so high! I’m currently taking letrozole after 2 years of anastrozole and exemestane. My er is in the 90%, so I have to take AI hoping that will buy me more time. I also read that taking drug vacation is a good thing specifically with letrozole.
https://pmc.ncbi.nlm.nih.gov/articles/PMC2491346/
We do what we can and hope that it works.
I am curious about everyone’s positivity. I was a triple positive dc. So I had the whole nine yards thrown at the cancer, and it worked. But these aromatase inhibitors are making me gain weight, as well as making me creaky! Good luck to everyone! This forum is so helpful. Thanks to all who share.
Understanding the mechanisms of aromatase inhibitor resistance
William R Miller, Alexey A Larionov
https://pmc.ncbi.nlm.nih.gov/articles/PMC3496110/
According to article cited above, there are at least 6 different kinds of resistance and different types of breast cancer resist differently. There is research into resistance--though I'm sure there could (should?) be more. As scientific articles go, the one above is relatively easy to understand--and worth a read IMHO.
PS My request is that when someone says they've done their research, that they post at least one link to the research study they have in mind.
PPS My request: If you've decided not to take AIs, please give a short account of which one(s) you've tried. If you haven't tried any, please say so.
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.
I read that too about the resistance, in my case the article said 30-40% develop resistance to AIs. I actually thought of taking a drug vacation myself and asked my oncologist, and of course, they poo pooed it. I am glad to see the article saying it is beneficial. I am going to take 3 weeks off when I go on vacation. Thanks for sharing the article, it confirms my theory.
That's what I'm going to do. I'll quietly take a few weeks off Letrozole after I finish a year (I just started it this week.) Mine will poo poo it too!
I am 71. If you do research on internet lots of information on lower dosages. Research now indicates 5 mg a day or 10 mg (tamoxifen)every other day have exactly the same results with far less side effects and is widely prescribed. I myself had a very small tumour, (lumpectomy), no cancer in lymph nodes and 5 days radiation. I am only taking 5 mg a day. At my age, quality of life means everything. I will not spend the next 5/10 years suffering like so many other women do on this drug. Please do the research.
Alternative dosing letrozole: https://pmc.ncbi.nlm.nih.gov/articles/PMC4740217/
Alternative dosing tamoxifen: https://pmc.ncbi.nlm.nih.gov/articles/PMC11101371/
Alternative dosing exemestane: https://pubmed.ncbi.nlm.nih.gov/36951827/
Alternative dosing anastrozole: No studies that I could find.
According to my medical oncologist, the studies cited above show that lower doses of AIs or Tam lower estrogen just as well as higher doses. What these studies do **not** show is that lower doses are as effective as usual (higher) dose in reducing risk of recurrence. Of course, that doesn't mean that lower doses don't work--but there's no scientific evidence that they do.
Thanks for the link to the article. Very informative.
Hello Judith, I am 65 I myself had a small tumor and 5 days of radiation but my doctors have me on 20 mg Tamoxifen and I am wondering what was their reason to only put you on 5 mg a day? Is your Doctor from Mayo?