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

It's my understanding that depleting the body of estrogen speeds up lose of bone density. Is that incorrect? If non-SERMS deplete estrogen, including estrogen that the body continues makes post-menopause, then in fact bone loss is greater than if one had not taken the aromatase inhibitor. And that side effect, while hopefully ameliorate by other drugs to offset it, is a given.

The exacerbated bone loss issue is in fact a side effect that alarms so many women and one study suggested it accounted for more than 30% of the double-digit rate of non-compliance with regard to adjuvant hormone therapy that the breast cancer studies that I've read cite as the current best-guess rate. [The non-compliance rate was derived from doctors reporting it as well as meta data analysis of prescription refill requests falling off over time. The inference was that these patients generally had insurance or financial ability to continue care and afford prescription co-pays so the non-compliance was more likely due to undesirable side effects.] I would be happy to find that I'm wrong in this understanding about the effect of AIs it is a primary variable in my decision. Thanks in advance.

For what it's worth, since I am very concerned about moving from mild osteopenia into osteoporosis (because the drugs to tackle osteoporosis are, to me, worrisome), I entered all the data from my DEXA scan from September! 2021 into the osteoporosis calculator. It predicted that I have a 19.54% chance of 'major osteoporotic event within the next 10 years.' As we know statistics are subject to a lot of interpretation. I reentered the exact same data but with a 10-year younger age, and the risk dropped by more than half. And I compared the DEXAscan to one 6 years earlier. The 'rate' of bone loss is conservative if one looks at the gm/cmsquared...which what the DEXA measures. So I'm hoping to continue to stave off osteoporosis. And assume that the 'risks' include people, as with most meta data or large studies, who have additional health, fragility, lifestyle and/or fall risks that I don't, at least currently! have. I am physically active and do yoga and sailing to maintain good balance so hope that diet and exercise slow down the inevitable.

Sorry if this is osteo overload but there was no such thing as osteopenia until drug companies invented the label according to an article from NPR. For those interested in how thousands of young women were and are, unwisely, taking serious drugs with unknown toxicity if taken for longer than study data can show safe, net search the article.
"How A Bone Disease Grew To Fit The Prescription"
December 21, 2009
8:21 AM ET
Heard on All Things Considered

Interesting article. Here is Dr. Susan Love on the subject: "Many women with hormone-sensitive tumors are now taking an aromatase inhibitor as part of their breast cancer treatment. These drugs—anastrozole (brand name Arimidex), letrozole (brand name Femara), and exemestane (brand name Aromasin)—reduce estrogen by blocking the aromatase enzyme and keeping it from converting androgens into estrogen. Clinical trials have found that these drugs, unlike the hormone therapy tamoxifen, increase bone fracture risk. For women who have osteoporosis and are on aromatase inhibitors, bisphosphonates should help reduce fracture risk. For women with osteopenia, though, it still makes more sense to wait until osteopenia has advanced to osteoporosis to begin taking these drugs. The exception would be a woman who is starting on an aromatase inhibitor and is already close to a –2.5 on her DEXA scan. In this case, she may want to start on a bisphosphonate while starting on the aromatase inhibitor." https://drsusanloveresearch.org/prevention-and-treatment-osteopenia/

I am going to preface my remarks with a reminder of the topic of conversation. Which is deciding to take endocrine therapy or not. I have been reading your posts and the great test information posted by @windyshores to that end. I also think there is naturally an imbalance of people posting that have side effects, most of the people who post on a topic are not the ones who are doing great,.
Yes, endocrine therapy can increase bone density loss, especially in those who are already losing bone density and those who are sedentary.
Every persons situation is different, every persons cancer is different. Every persons response to endocrine therapy will be different as well.
All of us have to be as informed as possible, and then make our own cost vs. benefit analysis, and then navigate our own path. Things like bone structure, age, previous illness, supplements, aggressiveness of cancer all have to be considered and are not something you can know by reading a blanket guideline, nor can you know these things about someone you have never met. Add in that everyone else has different wants, likes, and goals, or fear of recurrence and you get something deeply personal. A test cannot answer these things.
I did take 5 years of Tamoxifen and more than 5 years of Anastrazole, almost 18 years from initial diagnosis, I do have some substantial bone loss in my spine but none in my hips. I have taken some bone strengtheners before the pandemic started, but have not been able to resume them since. I currently have stable metastatic breast cancer, and I never have to second guess if I did everything within my power to prevent it. For me it was the right choice. I like to say it hasn’t always been easy but I am still here to complain about it.

Before coming to the Mayo site, I didn't know that a people could 'live with' metastatic cancer for years. I'm learning a lot about the breast cancer experience that is, oddly, more positive than I would have expected and more positive than friends' experience with this cancer has been. If my posts about the issue of bone density loss triggered by a atomatase inhibitors would better fit a different thread, please advise. Taking an aromatase inhibitor usually requires taking medicine to help prevent bone resorption according to the oncologist I've consulted. And there are several such drugs, with different possible side effects. Is there a different thread addressing this on the Mayo Clinic boards for those of us taking anastrozole who also need to know of others' experiences with the bisphosphonates, monoclonal antibodies and the few other options to make our own decision about which to take?

@vivi1 The article you posted was helpful, thanks. Maybe I'm among a very few people concerned about bone density loss but reading in the NPR article as well as to how the 'health condition' osteopenia was a market-manufactured term to sell a new drug to a wider audience was a revekation.

Everyone is concerned about bone loss with aromatase inhibitors, but many of us are more concerned about cancer.

I already had had osteoporosis for several years when I went on Femara. And my doc did not want me to take bone meds at that time (long story). So for me, I can say with certainty, the first year on Femara had a drop in bone density similar to that at menopause, but then levelled off. That is just one case. I went 6 more years after the end of my Femara without any meds, and without any fractures. I am now on Tymlos. If I had gone on that right after the Femara, I never would have fractured. There IS enough wiggle room regarding fracture risk for many of us, that we can take aromatase inhibitors w/out excessive worry on this. If you can take Reclast during the AI's, all the better because that combo not only protects bones but provides further protection from cancer.

@windyshores That's reassuring. I like the idea of wiggle room and time to research options.

As @windyshores comments, we are all concerned about our bones. That was the reason I first tried tamoxifen. Now I will try the AIs, which are more effective in controlling BC for estrogen + postmenopausal women. First I will see if I can tolerate an AI, then, if I continue with an AI, I will follow my bone scans while doing what I can to maintain my bone density. A woman on another site suggested that her eating 6 dried plums each day was effective during her 5 years on an AI. You bring up important considerations. Our wiggle room is in the choices we finally make at each junction of our treatment.