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

I have been on Anastrozle for 6 months and was congratulating myself on lack of significant problems when that all changed 1 month ago. It slowly began with minor dizziness and rapidly accelerated to a doze or many more times a day when I feel as if I will blackout. Occasionally, my heart feel like it is pounding in my chest. I should relate that I am 77 and util My BC diagnosis, was blessed to have great health and was not on any medication. I went to my GP a week ago and requested a Lipid profile. My last was 2 years ago and excellent numbers. No longer; LDDL nearly 250. BP 149 over 99. Seven months ago 130 over 80. For years i have weighed between 102 and 106. Now gaining weight at almost 2 pounds a month. I related to my oncologist my concern about taking this drug. While I did not have heart problem, I related that my son died of a massive heart at age 54; my mother also died in her sleep at age 61, my mother’s brother had his first heart attack at age 39 and the list I gave him goes on. My GP said she could write me a prescription for a statin; however, there is no evidence to suggest at my age it would help. I have an appointment in 2 weeks to receive a heart monitor to wear for 2 days. Results will take 2 weeks. I have not contacted my oncologist. I am thinking of visit a different oncologist, a cardiologist and a doctor of geriatric medicine because my current doc is huge on the med. I forgot to mention having hot flashes, which seem more intense but not more frequent.
My ANCO score is 4 with Anastrozle therapy. From the beginning of taking the drug, I was aware it could cause heart problems in elderly patients with a history of familial heart disease. I am extremely upset that the many years I worked very hard to stay heart healthy have been all for nothing after only 6 months on Anastrozle, if that is indeed the case. There is little study done on this in the aged. Thanks to every one for posting; every comment has been helpful.

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.

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.

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

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.

@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.

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.

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.