Discontinuing Anastrozole
Hi All - In 2024 I had diagnosis of Stage 2A ductal carcinoma ER/HR+ HER2 -. BRCA 2 positive. 3cm tumor no metastasis to lymph nodes. I took an aggressive stance on surgeries, opting for a double mastectomy with nipple removal (January 2024) and then removed my ovaries and fallopian tubes in September 2024.
I started AI with Anastrazole in October 2024. Unfortunately I've had every symptom associated with taking the medication: hot flashes, terrible mood swings, insomnia, brain fog, dizziness, and joint pain. I've been prescribed various medications to address those side effects but they tend to make me feel even more out of sorts and not myself. I am also mildly worries about the progression of osteoporosis long term with this drug as my mother also ended up with it after doing AI treatment.
I am meeting with my oncologist to discuss this soon but curious if anyone here has had to make a decision about whether or not to take Anastrazole because of how much it interferes with quality of life. What factors did you consider and how did you approach those conversations with your clinical team?
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Ali-Mac, I’m so sorry to hear that you’re experiencing side effects from this medication—it’s such a challenging situation. From my experience with Letrozole, which was incredibly hard on my body, my oncologist recommended Aromasin, and I found it much easier to tolerate.
Additionally, he suggested Zometa infusions every six months for three years. These not only help reduce the risk of recurrence slightly but also provide significant protection against osteoporosis. It might be worth discussing this option with your doctor.
I completely understand the fear of not taking any AI after a Stage 2 diagnosis. I hope you’re able to find an approach that works better for you soon. Sending you strength and best wishes.
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Hi @ali_mac,
We're so sorry to hear of the difficulties you're having! As lillyishere mentions, many folks who have side effects with one medication have a completely different (or at least less-difficult) experience with another aromatase inhibitor.
There are three aromatase inhibitors doctors use to treat breast cancer:
- Arimidex (chemical name: anastrozole)
- Aromasin (chemical name: exemestane)
- Femara (chemical name: letrozole)
So maybe bring this topic up with your doctor to see if another option might be available for you to try.
We hope this is helpful to you and that you find some relief soon!
—The Mods
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Hello,
Im in a similar boat, Arimidex/anastrozole was beyond horrible after 6 months. Too depressed and bedridden with pain, I stopped. For six weeks before I told my oncologist. Im on exemestane/Aromasin now. I'm trying to be optimistic, but if this becomes intolerably painful as well, I feel I have no choice but to take my chances and not do an aromatase inhibitor (AI). I'm 66 and there's not much left of a viable quality of life at this age already with arthritis and hyperthyroidism, and medicated clinical depression, let alone dealing with an AI. AI's also age you faster, thin skin, wonky fat deposits, bone thinning. Thats because estrogen is VITAL, for normal body functions.
I keep looking for research findings for percentage of reoccurrence when stopping AI before five years. My guess is if I continue AI for five years, I'll be 71 and in a wheelchair.
If I'm going to be in a wheelchair by 71 I'd rather have had a few years now of non-AI mobility and joy.
Sorry for the less than cheery point of view. But this is my reality. Yours seems much more hopeful even with out an AI. You have done above and beyond what could be done. Especially if you have no BRAC gene. Live YOUR life as best you can, without the fear of death.
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Hi. I was first on Arimidex and started SE after only about a month. Stayed on it a year. I switched to Aromasin to see if it was better. Only slightly. I have just crossed the halfway point of 2 1/2 years on the AI. My biggest SE is fatigue. Extreme fatigue. My Doctor prescribed Adderall. It helps fatigue and brain fog. I also have had surgery on my left hand for trigger fingers. My joints are getting more achy as time goes on. I also had osteo when I started and although I was on Prolia, my spine got worse. I'm currently on a year of Evenity shots. I am hoping they help. I'm going to ask my MO for a break if a few weeks.
I have determined that 5 years and am done. I know that my MO will want me on at least 7 as I was 2b. But I'm struggling as it is.
The bottom line, you have to make your own choice. QOL, to me, is just as important as quantity. Perhaps you could try 3x a week. That's what I'm doing anyway. Various things to help you get through before you quit altogether. I've read a lot and try a lot of things to keep the beast away. Read read read. Because many MO have no advice to give but to keep taking that AI no matter what. I'm doing everything I can to make it for 5.
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We wanted to share this page with you from our site: Refusing Hormonal Therapy for Breast Cancer: What to Know
Which offers these 2 study links:
- A study published in 2016 found that postmenopausal women who stopped hormonal therapy early were 35% to 56% more likely to have a recurrence than those who didn’t stop taking the medicine early.
- A study published in 2021 found that premenopausal women who stopped hormonal therapy early were nearly twice as likely to have a recurrence compared with those who completed the recommended treatment.
We hope this helps and that you find relief from your side effects soon! Hugs!
—The Mods
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I opted out of AIs after a few months of taking them while my surgery was delayed due to COVID and never went back on them after my BMX. I have no genetic factors and low oncotype numbers. The MO said that for my specific situation there was a 6% recurrence/mets risk without AIs vs 3% risk with so given that and being 62 at that time I decided not to take them. If I was younger and/or had higher recurrence risk I’d have tried harder to find an AI that I was able to tolerate.
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