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

ps The Tailor X study was to help women with intermediate Oncotype DX scores decide on whether to have chemo or not. Low scores and high scores had a more clear path.

"Women in the trial who had a score in the intermediate range (11­–25) were randomly assigned to receive hormone therapy alone or hormone therapy with adjuvant chemotherapy. The goal was to assess whether women who received hormone therapy alone had outcomes that were as good as those among women who received chemotherapy in addition to hormone therapy." https://www.cancer.gov/news-events/press-releases/2018/tailorx-breast-cancer-chemotherapy

The study supported the use of hormonal meds only, without chemo, for these patients. "According to the authors, the new findings suggest that chemotherapy may be avoided in about 70 percent of women with HR-positive, HER2-negative, node-negative breast cancer." All participants were on hormonal meds.

I took anastrozole for 7 weeks. From what I read about it, side effects can manifest within the first few days. I had immediate (by day 4) side effects that weren't onerous (mild hot flashes, a lot of deep muscle twitching that felt like pre-clamps but didn't develop into serious cramping, and a sudden onset of headaches). In week 3, I developed, pain on my hip that was bad enough that I couldn't stand on my right leg. I stopped taking the meds and the pain left on day 3 of discontinuance. I resumed the anastrozole a week later and the hip problem reappeared on day 4 of trying it the second time. I'd never had any pain in that hip or weakness in that leg to otherwise account for the pain. It might have eased up after a few months on the meds but my risk of recurrence is low if the genetic assays and stats are low so I discontinued them. But will do frequent blood work for key indicators and tumor markers to monitor any changes with those. If we see a bad pattern from that or any exam or test, I'd have to reconsider taking AIs. If I did take one, I'd likely have to start on drugs to try to prevent bone loss and that bothers me as those choices aren't without side effects either. It's a bit of a Hobson's choice either way for me.

Yes, correct. Though I thought that the Tailor X had a broader scope and Oncotype later used select data for its arm of its own data pool. OncotypeDX is, as the scientist there noted, the only test they currently offer with respect to breast cancer that is both predictive and prognostic. And none of their current tests are designed to help make treatment decisions about radiology for breast cancer.
I wish there were a test to determine how likely an individual's body would actually benefit from SERMs or AIs based on the genetics and general health and other clinical data. If we could each have that assurance, I think a lot more women would tolerate uneasy side effects because they can quantify the payoff in confidence. Alas, medical science isn't there yet but I'm very grateful that genetic tests are becoming increasingly sophisticated and available.

My limited understanding is that taking AIs for the first few years is the most important time so taking them even for a few years is better than not taking them at all with respect to breast cancer issues. That's a consideration and could be a welcome assurance. [I totally understand the poster who 'misses her Femora' and the extra sense of security she felt while on it.]

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.

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.

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. 💕

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?

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. 🙂

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.