Concerned about the side effects of anastrozole

Thanks. Actually, after I wrote you, I realized they are online on my computer. Duh! I can't understand the medical shorthand. I'll add markers to my list for my appt. next month. I like and trust the oncologist I'm seeing, but it can't hurt to ask him. I thought I had asked about markers but this disease is very challenging and I don't remember everything he says. And I don't take very good notes. Thanks for the heads up.

Oh, and I'm glad the side effects are settled down for you. I hope they will for me also. Thanks for your note.

I’m just a year in on letrozole, after a blood clot on tamoxifen. I am very stiff, have weak bones to start, foot fracture in October. I’m wondering now that you are off of it, did the joint pain and stiffness get better? Thanks

Yes, I was less creaky in the morning. As a side thought, I will note the irony of a medication to prevent recurrence creating bone pain....which is one of the symptoms of metastatic breast cancer. Talk about messing with your mind!!!! (For what it's worth, my oncologist told me that metastatic bone cancer is painful all the time, so if my aches and pains were in the morning only, I didn't need to worry. That advice helped a lot.)

@tenayalake86 my oncologists don't do markers. They tell me they are unreliable. Just to be clear!

Thanks for the extra info. I still might ask, but your information helps. I really should know more about what exactly they are doing but I guess I feel a little overwhelmed sometimes. Thanks again.

I don't know how many of the people posting here had the OncotypeDX, or other genomics test, to evaluate likely risk of recurrence. I wish more women were automatically informed of any and all tests that might help them make some treatment decisions. I had a lumpectomy in October 2021 and an OncotypeDX score that yielded a "risk of recurrence of 3% within 9 years" if I took an aromatase inhibitor. Using the industry statistic that two oncologists cited to me, wherein aromatase inhibitors are considered to reduce recurrence risk by about 45% over 5 years, I calculate that my risk of recurrence is a little over 5% if I don't take aromatase inhibitors.

I had a strong reaction to the drugs and made a decision that the risk/reward profile for them wasn't one that I felt comfortable with for quality of life reasons. That's a decision that I was only able to make though because there is some credibility to the OncotypeDX test and the low risk of recurrence it yielded also matched what my two oncologists thought I would receive -- given the small size of the tumor, the early stage at which it was identified and removed with clean margins and a negative sentinel lymph node biopsy. But there are no guarantees to any of this so it's really important to take the time that you need to identify what path seems most comfortable. The one thing about taking the drugs is that one can change one's mind. Unlike radiation or chemo, where once done 'tis done, the drugs can be tried. Or changed for another if side effects are an issue. And in some cases the doses can be reduced. So whatever one decides it's not necessarily an irrevocable decision from which there's no looking back.

The decision may be different for DCIS (invasive) which I believe is what @callalloo (can you confirm?) had, and, say, an invasive ductal or lobular cancer with a grade of 2 or 3. It is important to emphasize that our paths will differ depending on the severity of our situations.

Some tests label a risk of 5% as "high." I think it is also important to remember that with hormonal cancers, risk continues to rise over the years. Taking meds can lessen that rise for a time.

Thanks for your reply from one Jayne to another❤️Hope you continue to do well.

My main concern with all of these aromatase inhibitors is the long term effects for overall health. Research shows there are known deleterious effects of estrogen deprivation in healthy women under 50, accelerating the development of age-related diseases. According to the study, these women were not on AIs, but underwent bilateral oophorectomy. Currently age 49 and having been on anastrozole for a year, I have to wonder if it's the best long term health care decision for what I was told was a very common cancer that was caught very early.