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Considering no more Anastrozole

I am 56 years old. Healthy. Work out 3-5 days a week (walking, weight bearing exercise etc. ) I was diagnosed with invasive ductal, hormone positive HER2- , T1 in December 2025. Lumpectomy removed 9 mm tumor with clear margins. Radiation completed successfully.

MO advised that after surgery and radiation I have prevented recurrance by 95% (statistically). But completing by AI treatment for 5 years will better my chances of not having recurrence by an additional 3%.

I started Anastrozole and completed 2 weeks. I had the following symptoms: tingling in face/hands, hot flashes/night sweats, swollen fingers, sore throat/tight chest, mood swings, insomnia, nausea/vomiting, brain fog, bumps/hives. Spoke to MO and they advised to stop for 2 weeks and then start again.

I am seriously considering NOT going back on as 3 days after stopping I feel better already. I actually slept through the night. I am not nauseaus any more etc.

I wanted to hear if others had symptoms like this so quickly and if they eventually went away. Also, what about the long term side effects? I am aware of the effect on bones and I am taking calcium and vitamin D. I am also considering Veozah to try and help with hot flashes and night sweats. IMO, 5 years of these symptoms seems like a big impact on quality of life for 3%.

Comments

  • moderators
    moderators Posts: 10,111

    Hi @jackaroe , that sounds really tough, and honestly pretty intense for just two weeks.

    Some people do get side effects quickly with AIs, but they don’t always stay that bad, and not everyone reacts the same way to each one. If you’re open to it, options like trying a different AI or even tamoxifen (if appropriate) are worth discussing with your MO, especially since symptoms like hives and chest tightness aren’t typical.

    The 3% benefit is real, but it’s also fair to weigh that against your quality of life. Definitely worth a follow-up convo with your doctor to talk through options before deciding.

    You’re not alone in facing this kind of decision, and there are a lot of factors to weigh.

    Please keep us posted!

  • missymoo
    missymoo Posts: 22

    Hi @jackaroe

    Yes side effects can hit that fast. My diagnosis was fairly similar and like you I was a very active health conscious person. I was prescribed Letrozole. The dizziness & nausea hit 20 minutes after taking the first pill and never abated while I was on it. I think experienced the whole pamphlet of side effects with the strange exception of hot flashes. By far the worst for me was excruciating and disabling joint pain (I could not walk unassisted by 2 months into treatment).

    It sounds like you have an oncologist who is at least willing to listen and offer medical options. Mine was useless. As the moderators indicated some people find relief with different AIs or Tamoxifen and some find symptom relief in various ways. There are lots of discussions and information on this site that might help.

    Only you can decide what risk level is acceptable and what quality of life means to you.

    I made it to 4 months on Letrozole and due to an osteoporosis diagnosis and other pre-existing health conditions I chose not to try any other AIs. My attempt at Tamoxifen lasted 5 days due to severe eye pain & ocular photosensitivity.

    To continue with either drug, I would have had to quit work, sell my farm, horses and give up everything that my husband and I have worked so hard for. I have chosen to live with the odds given, rather than just exist. Even though I feel it's the right decision for me, I won't lie, it scares me. Maybe the fear will ease with time.

    Good luck with however you choose to move forward.

  • jwmusic65
    jwmusic65 Posts: 3

    thoughtful

  • moderators
    moderators Posts: 10,111

    Hi @jwmusic65 , welcome to the community! We noticed your first post here and just wanted to say hello. We're glad you found us.

    If you’d like, feel free to share a little more about yourself or what resonated with you in this discussion. We’re glad you’re here.

    The Mods

  • jwmusic65
    jwmusic65 Posts: 3

    HER+ breast cancer. Three lymph nodes removed & a tiny bit of cancer found in one of those which led to a “complete” treatment protocol which began with chemo & then radiation & immunotherapy (Herceptin). Also taking Anastrazole daily. Am overwhelmed with tiredness.

  • moderators
    moderators Posts: 10,111

    Hi @jwmusic65 , thank you for sharing more about what you’re going through. It sounds like treatment has been a heavy load physically and emotionally. We're sorry for that, and we're here to support you.

    This page on fatigue might be useful to read when you have a moment: Cancer Fatigue

    Also, this other category might be a great place to connect with others going through similar experiences:

    HER2+ (Positive) Breast Cancer

    Hope this helps. We're here for you!

    The Mods