I’ve been following a lot of activity of this topic in recent days and weeks and I share the fears and concerns of everyone on here. I am currently 38 months past the lumpectomy for my Invasive Lobular Carcinoma, Stage 1A. I had 20 radiation treatments, no chemo, and started on Arimidex right after the radiation was complete. I “endured” 26 months on that drug before making the decision to discontinue. I stopped first and told my oncologist afterwards. While she did not agree with my decision, I will have to say she “accepted” my decision based on believing I was informed enough and educated enough to understand the risks and benefits of my decision. It has been 10 months since I stopped. Before stopping, I made a list of every side-effect I was experiencing. That list was over two typed pages. (I handed this list to my oncologist so she would understand exactly what I was feeling.) I experienced every side-effect mentioned in the last many posts on this site and probably a few that weren’t mentioned.
I believe quality of life is a vital and valid concern for everyone making their decision about this drug. My surgeon told me she felt I was in a very good place in terms of risk of recurrence. None of us “gets out alive” so the idea of suffering with joint pain, anxiety, osteoporosis, weight gain, hair thinning, swelling in hands and feet (new shoe size, had to get rings re-sized), insomnia, mood-swings, hot flashes, excruciating leg cramps, and a few other things that escape me at the moment – this was not the way I wanted to live my life. My husband and I retired one year before my diagnosis and we both want to enjoy the best of what our remaining years have to offer. I stand by my decision to stop the medication. I feel better because of that decision. I still am under the watchful eye of my doctors so, if there is an issue in future, I will be able to jump in and deal with it early on.
Modern medicine is finding new treatments all the time. When, and if, I go down this road again, I hope and pray my options will be better for me. Until then, I believe in the quality of living this day – and every other day I may have – to the greatest level I can.