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.
I would appreciate knowing which book. Just diagnosed this week with mucinous breast cancer, likely pure type.