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

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.]

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.

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.

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 had a second opinion consultation with a very reputable breast center (UCSF) oncologist today regarding treatment. He advised against my continuing on tamoxifen because 1) it is not as effective as AIs in lessening recurrence risk 2) it has long lasting negative and serious side effects and 3) risks of DVT and endometrial cancer increase with age. He stated that the Oncotype DX test score is for now the best predictor of risk, so a drop in METS risk from 5-6% to 3%, as well as the 50% risk reduction in a new primary or regional/local breast cancer, with an estrogen blocker is worth the try. He also said that only 1 out of 3 women on an AI has terrible side effects, and even if I can only take it for one year due to SEs, that one year is better than no year, sort of like working a crummy job but still getting paid. So, in my case, I have decided to try an AI, keeping a keen eye on my bone density and taking supplements and doing strengthening exercises. I think we can all agree that we don't want any BC recurrence, a distant metastasis least of all. As my breast surgeon says, our goal is quantity (of years) and quality (of life).

For what it's worth, the onco I saw today warns against raloxofine, being neither great at protecting bones or protecting against breast cancer. As SERMs go, he thinks Tamoxifen is better and has way fewer really bad side effects.

@jeaniebean
I tried to reply to this but might have misclicked and didn't send it. But kudos to you and everyone here for doing the other things we can do to help our bodies. The body is amazing and who knows which variables come into play when we pay attention to the basics?

I agree. Femara was a better choice for me, but by then I had been through 3 types before I was able to talk the oncologist into femara. The difference was incredible, but the damage from the previous 6 months on the ones with all the fillers was just too far gone. My onco told me all I can do now is pray..... Ridiculous! Not saying I dont give thanks to God for every day I live now, but I also see all the side effects from drugs in general, and I am amazed at what I accomplished without drugs and focusing on diet and excercise. I am 68 and have never felt better in my life, so i will gladly pray, eat well, and live my life to the best it can be.......

I'm going explore diet variables too. One of the surprises to me in reading so much cancer since September's surprise Bad Biopsy News is seeing so many studies linking cancer and diet. Whereas I've seen all the public service ads taking about overweight in general terms, I didn't think it a cancer risk. Nor did most of my friends when I asked them. Clearly there's a complicated interplay at balance. The endocrinologist stressed how much is still being learned about, for just one example, how complicated body fat is as a system and it's affect on certain cancers. That might be one area where we can impact on estrogen levels even if not taking AIs.

Thank you for this and all you contribute here. I agreed with thr oncologist going forward. I'll stay current with self-exams and a schedule of doctors' exams and mammograms. And will do blood work every 3 months to keep an eye on tumor and other markers. And reserve the option to reconsider if variables change. So he and I are a team now and the patient portal is excellent for getting questions to the doctors and promised responses with 24 hours.

On a different note, your experience with a generic was interesting. Someone on another thread had a markedly better experience with the brand-name of an AI versus a generic of the same med. And someone elsewhere posted about very sudden side effects on a generic she'd been taking for a long time then discovered that her pharmacy had recently switched to a different manufacturer. Maybe people having side effects can benefit from just changing to the brand if possible or a different pharmacy to try it a different company's generic version. (We saved a pet's life once doing just that for what it's worth. )