Aromatase Inhibitors: Did you decide to go on them or not?

Thanks for the thought-provoking replies. I may, stress may, reconsider my decision not to take hormone therapy. I reread the biopsy done after surgery in October, '21 and see the word micropapillary. I did get a second opinion from a different oncologist who suggested trying AIs and, if the aide effects are too uncomfortable, discontinue them. Will see original onco this Thursday and get more info about the carcinoma. [He never really discussed it, just rushed into which AI he wad prescribing. We have communication issues..meaning he has an agenda and probably not best doctor for a proactive patient who wants to know options and variables to make the right decision that she has to live with. The surgeon is referring me to another onco, a younger female.]

For a BC diagnosis everyone should consider a change in diet. The diet I chose is from drmcdougall.com. Search for his articles and videos on cancer, breast cancer and women’s health. I am also using mycotherapy which is mushroom supplements. The diet and mushrooms strengthen the immune system which is very important. Also doing exercise and sunshine to keep bones strong. Good luck.

I am very familiar with this discussion. I was diagnosed with Luminal A (Stage 1A) IDC last summer, had a lumpectomy followed by whole breast radiation. The radiation brought my same breast recurrence rate down to 1.7%, improved slightly to 1.3% with hormone adjuvant therapy. My Oncotype score is 8, estimating distant recurrence to 3% with an AI or Tamox, or 5-6% without. Because I have progressive osteopenia, I opted for tamoxifen. After taking a lesser dose for 4 months I started to experience very debilitating joint pain, which affected my gait and my yoga practice, as well as horrible night-time leg cramps and depression. I also feared both DVT and endometrial thickening. I stopped the tamox last week. As a very active and trim 71 year old, I wonder if the benefit of taking an anti-estrogen drug for 5 years outweighs its toxic side effects. I also understand that estrogen positive BC recurrence stretches beyond 5 years. Here's a good article: https://www.verywellhealth.com/late-recurrence-of-breast-cancer-4766608 I have an appointment with my by-the-book oncologist and another one for a second opinion with a breast cancer specialist to discuss my options. Will I take tamox again, this time in the a.m. as opposed to the p.m., or try Armidex/anastrozole? Very possibly. In the meantime I am changing my diet to support my immune system. Anti-Cancer: A New Way of Life is an inspiring book on how diet can reduce cancer risk.

You might want to do a Breast Cancer Index test which tests the effectiveness of aromatase inhibitors for you. It actually is used to help with the decision whether to continue after 5 years but still it might help you. The various tests, Oncotype Dx, Mammaprint, Breast Cancer Index and Prosigna all seem to have different results for the same individual. I have had all but Mammaprint. Oncotype Dx had me at low risk (lower than you) but the others had me at high risk. However the BCI showed no benefit from AI's, specifically after 5 years but presumably earlier (I completed 5 years of Femara).

I already had osteoporosis when I started Femara and yes it got worse. The first year there was a dip in bone density then bone loss went back to the normal rate. I should have been on a med but for various reasons docs didn't put me on anything for bones. I am now on Tymlos.

The side effects of AI's are overblown by the Internet because people who don't have them tend not to post. I think it is distressing that so many are discouraged. I found that as long as I walked 45 minutes, the joint pain was fine. Clearly reducing estrogen has effects over time. Hot flashes happen at first but for me faded. For me they really were not bad at all.

The BCI folks told me that their test measures things differently from Oncotype. They compared it to counting number of cars versus speed. I do think that the Oncotype is useful in showing that an AI can nearly halve risk. With a low Oncotype that may not seem like a huge benefit but I felt 3% was well worth it, and in fact, the other tests consider lower scores to be high risk.

Apologies for such a long post. I was editing and shortening it when I guess I accidentally sent the original. Making the decision not to continue on AI meds was a long, analytical one based on reading more than 50 studies. I tried to find one that looked at the 'do nothing' option but a physician friend pointed out that it wouldn't even be ethical to do one. Once a treatment is proven effective, any study committing participants to not taking it would violate several protocols. So most studies compare meds against each other. One study did look at 'non-compliance' rates for breast cancer patients who ceases taking the hormone therapy and, in that study, over 80% of the women still in contact did not have a recurrence of breast cancer in or by year five. But that's rough data including people with many varieties of breast cancer and inadequate follow-up.

First of all, thank you all for being here. Its been helpful to find a place where this question is being addressed that I was struggling with on my own.
I was diagnosed with stage 1A invasive ductile carcinoma in September, 2021 [9mm, est.+, prog.+, HER2-]. I had lumpectomy surgery 10 days later. One sentinel lymph node removed and negative. All margins clear.
Then the hard part came as I read as much as I could of studies and statistics that would give me the best odds of making truly informed decisions about what to do next. Google Scholar and the translation app were invaluable. As it turns out, the OncotypeDX recurrence score for my tumor tissue came back as 9. With a 3% 'risk of recurrence, local or distant within 9 years' IF I took SERM or AI therapy. I rejected radiation which the radiologist said would reduce my 10% risk of occurrence, but only in the small area of the lumpectomy, to 2% because the genetic test showed I did not have a 10% risk. And the tumor was in the left breast and I didn't want radiation near the heart. My oncologist was insistent that I at least try anastrozole for a month and I did and had odd side effects and developed a scary pain in my hip that caused me to limp for the first time in my life. [My oncologist quoted Oncotype data incorrectly so I admit to not having total confidence in him. I spoke with senior people at Oncotype and they notified him as to what one could validly infer from the test. He and the radiologist both told me that the OncotypeDX score was based on a patient having had radiation whereas the data pool actually precluded anyone having had radiation or chemo prior to taking the test!] I am a finance professional so I can make some sense of the value of good data and defensible statistical analysis. But am woefully under-educated in the biological sciences so the past few months of reading and making sense of medical studies in terms of my personal decision has been an experience and journey of sorts. And it reconfirmed how much disagreement there is among the experts as well. A few statements resonated with me. One oncologist asked, in a study, whether it is good medicine to suggest 49 women take high-risk drugs when the projected benefit was a possible benefit of preventing only one incidence of cancer. Another two studies cited what I think is the breast cancer 'industry' best-guess statistic that, all other variables aside, anti-hormone therapy can reduce a woman's risk of estrogen-fed breast cancer by 42%. [The oncologist I saw said 'we say hormone therapy will reduce the risk by 50% to keep it simple but it's closet to 40-45%'] It's a given that depriving the body of estrogen unequivocally speeds loss of bone density. And in the majority of cases, triggers increased cholesterol levels. And appears to cause changes in epithelial tissue. (The latter two, thus, increasing risk of stroke and cardiac events.) So, again this is a personal risk/reward analysis, I don't see a payoff in triggering a speedy osteoporosis since I have moderate osteopenia and/or coronary (since I have high cholesterol and cannot take statins and the genetic marker for heart disease) for a net 2 percentage points reduction in risk of recurrence; the risk of 5% without tamoxifen or AIs versus the prognosticated 3% if I take them. I think that, if the bone density treatment drugs had far fewer side effects and if I could control cholesterol safely with statins, I would consider ignoring some side effects of the hormone therapy and bear them for the best-guess 2% risk reduction. And if I had a high risk of recurrence, the decision to skip them might be different. It's a kind of roll of the dice, but so are the drugs and their side effects and the drugs to treat those side effects.

No ,it started years ago and had nothing to do with anastrazole. I'm sorry to have misled you

Did it start while you were on anastrazole or after you stopped?

I had trigger finger; it was corrected when I had my wrist operated on for carpal tunnel syndrome

Hi @mari @raebaby @pjrist70, I'm tagging you on this discussion about anastrazole (Arimidex) and aromatase inhibitors to continue your conversation about trigger finger, managing side effects and deciding to continue or not. I ask that you continue the conversation here in this discussion.

As per the Community Guidelines, we recommend to try to stick to the topic. See guideline 4 (https://connect.mayoclinic.org/blog/about-connect/tab/community-guidelines/)
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How are you managing trigger finger? What decisions have you made regarding AIs?