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

I still can’t walk barefoot since tamoxifen and I stopped 7 weeks ago and Monday (yesterday) was first day I felt good. Bottom of feet still so painful
Now she wants to start me on Arimidex in January. I would love to tolerate any drug that could potentially save my life but at what cost ?

It's been two years since my mastectomy and had I just had my first mammogram, it was clear, and I am so grateful. I took Arimidex for 18 months and have been off of it for eight months due to severe side effects. I had a PET scan after my surgery and it was clear. At that point I was told that chemo was "preventative" as was radiation. Then the pandemic hit and I was stranded away from home for three months. When I got back I met with the oncologist and said I would continue with the Arimidex but no chemo or radiation, I am 76. It was the right decision for me as my quality of life is more important to me than the number of years. I knew what the side effects would be with both options and that I wouldn't tolerate it well. Life doesn't come with guarantees and neither do the treatment choices. After weighing the options and considering that it seems everyone is "treated" the same, for me I made the right choice. Question everything, do your research and go with what you decide is best for you. My hormone levels weren't checked before I started the Arimidex or during the treatment. When I asked to have them checked they were lower than what is normal for my age and have only gone up slightly in eight months. I was told the test is accurate, so I wonder why it isn't done before treatment is started. At any rate, I am going to try to enjoy each day and enjoy my good health, and deal with the Fear of Recurrence that someone mentioned is an actual "condition". The oncologist said the first two years after a mastectomy has the highest risk of recurrence, so far so good. Now I just have to deal with the osteoporosis left behind from the meds.

Recurrence and spread are two different things. I have read that with hormonal cancers risk continues to go up even after 5 years. With estrogen negative cancers, if you make it 5 years, your risk is low thereafter. That is what I read but cannot cite right now.

I have been reading but not posting here for a while, and I would like to make a point of a well known statistic. 80% of all breast cancer is estrogen receptor positive. Although we are all different in shape and size and types of cancer, and even the genetics that get us here. We all have one thing in common we have breast cancer and on this thread at least, we all are estrogen receptor positive.
I don’t believe there is a single answer for this, if it was solved there wouldn’t be tens of thousands of people or more worldwide working on this problem. They work on our behalf to help find us solutions. So while there is no one right answer, there are some best possible (for now) options for many of us.
I like to tell people the last 17 years haven’t been all rosy, but I am still here to complain about it. 😂😂

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/)
4. Stay on topic.
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How are you managing trigger finger? What decisions have you made regarding AIs?

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

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

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

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.

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.