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

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/

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

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.

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.

You are very blessed indeed to have that team. I can’t argue with resting the body for sure. Lol
I hope you are willing to come back and visit this conversation again. It is refreshing to hear someone who is managing endocrine therapy well.

I take mine at night with my cholesterol med (genetically high from my mom). My PC told me to take the cholesterol drug at night because it works better when you’re at rest; and my medical oncologist told me to take the Anastrozole at night because if I was going to have joint issues, etc., at least I’d be asleep through several hours of it. Sounded like a plan, so that’s what I do.
I talked to my radiologist about the reduction (I’ll double check with my breast surgeon when I see him in a week and a half); but he said I should wait about a year after I’ve been through the cycles of blood work, mammograms, etc. plus he said that a good year of healing my body can’t hurt before subjecting it to another surgery.
I’ll definitely take my breast surgeon’s opinion about that above all others.
I have been blessed with excellent doctors along the way who encourage questions (I often show up with a notepad full - lol); but every one has been willing to do what all cancer patients need - to be heard. I love the team I’m associated with on this journey. They have always cared about my feelings and will spend all the time I need so that when I leave there, I’m more knowledgeable and therefore less anxious about what to expect. 🙂

Hurrah, you have made it through some really tough stuff and come out the other side. Good for you for doing everything you can to prevent recurrence. I know many, many women never have a single side effect beyond the normal menopause effects of endocrine therapy. These are not usually the folks posting here, but I wish it was. I did and do have effects of a serious onset menopause, but it was never something so bad that I considered not taking it. The fact that your hormones are high and that your cancer is driven by hormones makes your decisions well informed.
Did you decide to get the reduction anyway, or breast conserving surgery? There has been conversation about timing, do you take your anastrazole at night or in the morning?

Great comments today. I’m 11 days into Anastrozole after 20 radiation treats to my right breast. HR Pos, HER2 Neg, Neg Nodes, Stage 1a ductal carcinoma. Developed overall breast rash in 3rd week of radiation, which after 2 wks of completion is gradually getting better. No reaction from drug yet, but I’ve been on Calcium with D3 for several years due to Osteopenia and I started taking Collagen in January, so I’m hoping they help to combat joint pain if/when it occurs. I’m the first in my family to have Breast cancer and I’m the youngest sister at age 68, so it was quite a shock to the whole family. I never experienced hot flashes in peri menopause and so far not on Anastrozole. But as I said earlier this week, I’m trying not to anticipate too much and deal with issues if/when they occur.
My biggest surprise is how much post-surgery treatments were involved when all my tests/markers came back so good & yet I still need lees 20 radiation treatments (16 full breast and 4 boosts at the origin) and then an estrogen blocker for 5 years! I actually felt worse emotionally after surgery, BUT, the women on my mom’s side produce excess estrogen in their breasts post menopause. My mom & oldest sister & two of my mom’s sisters all had reductions after age 60. My breasts have gotten larger post-menopause as well. I was actually considering a reduction just before my diagnosis, which was discovered on a routine mammo at the end of October. Since mine was Estrogen driven, coupled with my family’s estrogen production history, even though none of us have ever taken hormones, I felt I should take the blocker to help hinder what my body wants to do naturally.
This is MY story & everyone is different, so I don’t want to influence anyone with their journey. Only you & your oncologist can make those decisions. I just felt I would share mine in the event someone else is going through a similar situation.
Thanks to Mayo Clinic for giving us a place to share our stories, fears or just to vent. 💕

I hope you don't feel scared into submission for long and I have confidence that you are not and cannot be :-).
But maybe between a rock and a hard place on bad days and feeling all of this is too much to have to absorb?
This whole BC saga has been both unexpected and enlightening for me. Unexpected because no one in my family, out to first cousins, has had cancer except for my father's death from prostate cancer at age 86.
But the enlightening element comes from the mental discipline it requires for me to keep a productive focus. I'm a realist and, while I'd like to be hard-wired for optimism, I'm not so denial isn't my fallback coping mechanism. But a mathematician friend reminded me that a risk of say 10% for some event to recur is, concurrently, just as validly, a 'risk' of 90% that it won't. The 'odds for' are alarming in this case of breast cancer recurrence because that would be a terrible dreaded event coming true So the 10% can overwhelm us but it helps to remember that the odds against are also equally valid numbers and qay bigger . Or at least it helped when my math prof friend pointed out that '90% against' needs to have some weight in one's logic. And Is helpful to remember while also doing everything reasonable and likely to try to increase the odds against.
This is helps me feel like it's worth the effort to work at the variables we can tweak (healthier diet, weight-bearing exercises and creative outlets) which help one feel empowered enough (as are we all) to make choices that feel right for me. And change course when better ones arise.

I took tamoxifen for 4 months and stopped due to SEs, both joint pain, including horrific night leg cramps, and fear of the more serious possibilities that come post menopausal. I am not sure if I will be able to tolerate an AI, and I rather doubt it, but I am going to try them. My osteopenia is not severe, so I am hoping I can keep osteoporosis at bay with supplements and exercise. Are you familiar with the online prediction tools ?: https://www.tuftsmedicalcenter.org/ibtr/
which shows the benefits of both radiation and hormone therapy, and https://breast.predict.nhs.uk/tool
Given their toxicities, I too wish there was a way to determine who truly needs to take a hormone blocker, but since there is not yet a dependable blood test to detect distant cancer cells, all estrogen positive BC patients are prescribed them. I feel scared into submission for the time being.