Concerned about the side effects of anastrozole

On Feb 2, 2016 I was diagnosed with IDC, Mucinous type. I had 2 separate tumors in the right breast. I elected for bilateral mastectomy with natural reconstruction, a tough but very satisfying route. I was then prescribed Arimidex. I took it for about 4 months and had multiple side effects that were intolerable: severe insomnia, severe mood swings, depression to mention a few. As a result, I was prescribed sleeping pills and anti-depressants. I finally said this is crazy and my oncologist took me off the Arimidex and put me on Femora. I also stopped the antidepressants and sleeping pills! I took 2 Femora pills, 1 each day, and had the worst diarrhea I have ever had in my life that lasted a week with stomach upset for a month. That ended that. I am now on Aromasin. I started with 1/2 tablet for a month. I will now add a whole tablet every other day for a month. Pending my reaction, I will then move to the prescribed daily pill, taken in the AM with a full breakfast. If this does not work, I will go back to 1/2 tablet and stay on that for 5 years!

I am very concerned about several things. First, the protocol is for women to take the prescribed dose-1 tablet on any of the three aromatase inhibitors daily for 5 years. It does not take into account if you are 5'2" or 6'2" tall. It does not take into account if you are 120 lbs or 350 lbs. It does not take into account if you are Caucasian, African American, Asian, Native American or from Mars. It does not take into account if you are 25, 55, or 75. It is a one size fits all protocol and my oncologist is not very sympathetic about me altering the dose.

I am one of the most blessed women alive. I did not have to have chemo or radiation. I could have had a double lumpectomy as my breast surgeon said given what I have and my age, (slow growing, rare-2%, that strikes women 68-72 usually BRCA negative), with radiation and be fine. I could have had the right breast removed and left it at that. I was quite large breasted so didn't like that option. I had 2 breast biopsies a week apart, a third biopsy the next week on my hip (negative for anything) and a sentinel node biopsy the forth week. I was done. I elected to have bilateral mastectomy as I knew I was never going through this again. If anyone is interested in knowing what "natural reconstruction" is, I am willing to tell you.

My whole point is that these protocols need to be worked out with your medical team and you need to be in charge of our own health. I found an exceptional book that helped me through my decision making and can't imagine doing this without it. It empowered me to decide and keep deciding based on my body and how I physically reacted to all of this.

Blessings to you all on this horrible psychedelic trip God is good and is holding my hand every step of the way.

Hi @tinalove, welcome to Connect.
You'll notice that I moved your message into the Breast Cancer group.

Anastrozole belongs to a class of drugs called aromatase inhibitors. You can find out more about them and what to expect here http://www.mayoclinic.org/tests-procedures/hormone-therapy-for-breast-cancer/basics/what-you-can-expect/prc-20015050 On the list of side effects of anastozole, hair loss is listed as an uncommon side effect.

It would be nice to get a first-hand experience for someone who has taken hormone therapy. I'm tagging @luladavis @maureenkarras and @lecase to see if they will join this discussion.

Maureen wrote a while back about side effects of exemestane, one of the other aromatase inhibitors https://connect.mayoclinic.org/discussion/dry-skin-red-itching-burning-and-peeling/ and Lecase asked about the pros and cons of anastrozole and tamoxifen. https://connect.mayoclinic.org/discussion/can-anyone-speak-to-the-proscons-of-arimidex-vs-tomoxifen-ive-been-on/

Tina, what kind of breast cancer did you have and what treatments? How are you doing?

Anastrazole????. Hi, I am new to this site. I had stage one breast cancer. A lumpectomy removed all of it and they did not find it in my lymph nodes. I had only 10 radiation sessions. Then they put me on letrizole. I was coping well with the letrizole until I started itching. The rash areas increased. So after being on it about 9 months I was taken off of it. I am entering my 4th week off of it. Next week I will start anastrozole. I was told that I might also have the itching with that. So I’m worried. What bothers me even more is the possibility of having stage one alopecia. My hair is good, thick, and long. I don’t want to lose it and I’m worried about anaphylactic reactions. I wonder if they can give me an epi pen of which I know nothing. I had only a 3% chance of the cancer returning. Gee there doesnt seem to be many good choices. I used a skin cream prescribed by my GP prior to seeing my cancer specialist. Since it is probably a cortisone and anti fungal product I guess it’s not a good alternative to staying on letrizole. I didn’t sleep well with letrizole but without my allergic reaction it doesn’t seem as extreme as anastrzole. Does anyone have knowledge or experience. I don’t want to have raggedy hair.

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.

I was started on Arimidex in September 2019 and it started out ok but then I started having continuous UTI’s.
I talked to my oncologist about it and he made me look stupid when he said it had nothing to do with the medication.
I thought I would stop it to see if the UTI’s stopped and they did so I haven’t taken it for about 3 years.
If my cancer returns then it returns.
I started on Femara at first in July 2019 and I ached all over so my oncologist switched it to Arimidex.
I hope and pray you do well while taking it.

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.

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