Hormone blockers - looking for others like me
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Hello everyone,
I was diagnosed with invasive ductal carcinoma Stage 1, Grade 3 in 2024. I have completed lumpectomy, chemotherapy and radiation. Now taking hormone blocking meds for 5 more years. Im new here and wanted to connect with others in similar circumstance. Ive been struggling with side effects of hormone therapy and general fear of cancer returning😕
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- *Bumping this newly moved thread for @ebst61*
- You are certainly not alone! Managing the side effects from maintenance treatments such as hormone-blocking therapies, as well as the fear of recurrence is an often seen topic amongst many breast cancer survivors in our community. We hope others can chime in to share their experiences and coping strategies with you. We also invite you to join our Zoom survivorship meetups Bonded by Breast Cancer for added support. ❤️
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I would ask the oncologist for a survivorship plan to include the chances of recurrence based upon your personal history if you stay with an AI/tamoxifen v. going forward without the medications. You'll have to decide if the percentage difference is worth the impact/possible impact of the side effects on your quality of life. For me? I never had an oncologist do this for me and just did what I was told. For a very painful and damaging year, I stayed with the protocol until I couldn't manage it any longer. I am not currently taking medications to prevent recurrence, but am left with managing their legacies and the negative impact on my quality of life. I wish I had experienced better whole-person care wherein I was provided with the information I needed in order to make better choices for myself.
At the end of the day, whether or not to take hormone blockers is a personal decision based upon your comfort level in dealing with percentages of risk v. what your life looks like and what you would like for it to look like. I hope that makes sense.
Breastcancer.org has some amazing podcasts that are very helpful in this regard. I was just listening to one this morning. :)
Best to you in your journey. :)
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I stopped taking anastrozole and refused to continue zolodex after 2 wks and a raging melt down. I had turned around to see my 8yr old step son standing there with alligator tears rolling down his face. The memory still make me cry. Yep, the side effects are wretched. I have no idea how other women do it. My oncologist told me that I would die if I didn't take them to which I replied that I would rather die than traumatize my kid for life. That was 2yrs ago and it hasn't come back.
There is no definitive answer for you as to take them or not take them. It is absolutely a personal decision that each of us has to make.
I'm just waiting for the day that a man gets told he has to stop all his testosterone to live and just deal with it, continue on, go back to your life
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Hi ebst61! I am taking the hormone blockers, and it isn't easy. Just wanted to reach out and say hi!
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I made the decision to discontinue hormonal therapy after 5 months. I was already in menopause, and at age 32 I couldn't function due to the side effects.
I am a 12 year survivor. I don't know what the future holds, but no one really knows. I personally believe that if it's going to come back and it's going to come back regardless of what I do. I believe that if it's going to come back it's because it was always going to come back regardless.
I met women with similar cancer subtypes and size, they did EVERYTHING "right" and it recurred. I believe that recurrence is a crapshoot, ultimately. Some people are very lucky, and some people are not, but for me quality of life is more important. If I did have a recurrence i would carefully consider hormonal therapy that did not affect my quality of life. If I have recurrence then I'll make my choices.
I have zero regrets.
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I was switched from Anastrozole to Exmestane and my joint pain improved considerably. I still have hot flashes/night sweats, but I am managing. I would rather take the drugs and know I did what I could to prevent recurrence. I struggled with taking the drugs initially, but I was also struggling mentally not taking the drugs. The only prescription I have is for preventing cancer recurrance. It is hard taking drugs that cause side effects. It's also hard knowing I had breast cancer and am at high risk of recurrance.
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