Decide against aromatase inhibitors?

Posted by ruffianfan55 @ruffianfan55, Jul 2 12:02pm

I have DCIS ER+PR+, stage 2, treated with lumpectomy(clear margins) and radiation. I’m 70 and am leaning towards not taking aromatase inhibitors since they only lower the risk of recurrence by 2%. Has anyone else decided the same and do they regret it?

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Profile picture for gigipatula @gigipatula

Mine was Stage 1 IDC PR/ER + HER2 negative. Clear margins, no lymph nodes, 1.3 cm tumor removed via lumpectomy and same surgery had oncoplastic breast reduction from a almost C cup to an A cup. No radiation, no AI's no chemo and I also declined the Oncotype test. I was 64 when I was diagnosed I'm no 67 and so far so good, clean mammograms since, praying it stays that way!
It's a tough decision but you have to really weigh risk to benefit and see what works best for your particular case. Best of health to you and everyone here.

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Wow congratulations that is awesome. Wishing you the best and so Happy you're already 3 years in.. mine was similar to yours except I was multi foci.. had fast growing tumours in 5 areas in the same breast so the whole breast had to go.

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I won’t use them either.I will continue using HRT I am 77 and have managed to avoid osteoporosis,heart failure,and Alzeimer’s.Both of my older sisters have horrible diseases,one with Alzeimer’s and the other with a pacemaker the size of a shoe box.Unfortunately both sisters who are 6 and 10 years older than I am, stopped using the hormones that were “fake” during the Women’s Initiative Trials.So many women were denied proper hormone therapy.

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Profile picture for prc73 @prc73

Did you have an Oncotyoe test. Did it show your risk of distant Metastasis in 5-9 years. Surgery is always 98perrcent. That other 2 percent the way I see it is easily that one or 2 little cells that get away and can lodge somewhere else in your body and show up years later . You could have taken Inhibitors and been so allergic you may have stopped as has been the experience of some . So you cannot say conclusively that you got bone cancer because you did not take the inhibitors. Cancer cells are very tricky and are geniuses. I always imagine them as little parasites always trying to judge my body's next move and find a way around.I had mastectomy for invasive cancer ,clear margins, no lymph nodes involved. My oncotype was high and my oncologist has me on chemo to zap any cells that may have gotten away and also to disrupt the cancer DNA . Is it a guarantee? We won't know till years from now. After researching I wanted to be armed with an option in case AI don't work out for me and the chemo has not been bad at all .

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I did not have the Oncotyoe test as it was never mentioned. You are right; no guarantees. I’m taking one day at a time. Thanks for sharing. God bless you🙏

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Profile picture for worried1111 @worried1111

Yes. Unclear margins which turns into a 4 cm tumor. Found by my daughter two weeks after the surgery with bandages all on. My staging changed from 2B to 3B. And from no chemo to max chemo. Strategy being neoadjuvent chemo to shrink the mass to get it out as it was sitting on the ribs.

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I wonder why the surgeon didn’t order an MRI to have an accurate picture of your breast’s condition so as to come up with a comprehensive treatment plan. Mine didn’t do that either. I was worried about it for a while until my first clear MRI. I hope you respond well to the new treatments. Thank you for sharing your experience!

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Profile picture for gigipatula @gigipatula

Mine was Stage 1 IDC PR/ER + HER2 negative. Clear margins, no lymph nodes, 1.3 cm tumor removed via lumpectomy and same surgery had oncoplastic breast reduction from a almost C cup to an A cup. No radiation, no AI's no chemo and I also declined the Oncotype test. I was 64 when I was diagnosed I'm no 67 and so far so good, clean mammograms since, praying it stays that way!
It's a tough decision but you have to really weigh risk to benefit and see what works best for your particular case. Best of health to you and everyone here.

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I had the very same diagnosis with stage 1A, Grade 3, size was 7 mm. I had a lumpectomy in January, 2025. My margins and lymph nodes were clear and I followed with 20 rounds of radiation (that I am not sure if that was a good decision). My Onco score was 22, age is 76. Med Oncologist prescribed Anastrozol which I will not take due to all of the debilitating side effects, age, and research on importance of estrogen.
I was finally seen and listened to by my gynecologist who validated my concerns and reasoning. I now go to a high risk breast clinic.
I prayed hard all through my journey. Prayer gets me through each day along with leaning heavily on the Holy Spirit.
The decisions we must make are so difficult, emotional, and stressful. The doctors are so siloed in their professions, we cannot get needed info until we go through the steps according to the medical protocol.
I am trying to be as toxin free as I can, changing my diet, trying to work in more exercise, filtering my drinking and cooking water, changing my cookware and storage containers, taking supplements, etc.
We are not in control of the span of our life. We can only do the best we can with the knowledge we have.

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Many thanks and best wishes to everyone! I received a lot of information to think about, I see the oncologist tomorrow and will have plenty of questions. Love to you all!

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Profile picture for ruffianfan55 @ruffianfan55

Many thanks and best wishes to everyone! I received a lot of information to think about, I see the oncologist tomorrow and will have plenty of questions. Love to you all!

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Good luck today 🙂

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Profile picture for bvaughn @bvaughn

I had the very same diagnosis with stage 1A, Grade 3, size was 7 mm. I had a lumpectomy in January, 2025. My margins and lymph nodes were clear and I followed with 20 rounds of radiation (that I am not sure if that was a good decision). My Onco score was 22, age is 76. Med Oncologist prescribed Anastrozol which I will not take due to all of the debilitating side effects, age, and research on importance of estrogen.
I was finally seen and listened to by my gynecologist who validated my concerns and reasoning. I now go to a high risk breast clinic.
I prayed hard all through my journey. Prayer gets me through each day along with leaning heavily on the Holy Spirit.
The decisions we must make are so difficult, emotional, and stressful. The doctors are so siloed in their professions, we cannot get needed info until we go through the steps according to the medical protocol.
I am trying to be as toxin free as I can, changing my diet, trying to work in more exercise, filtering my drinking and cooking water, changing my cookware and storage containers, taking supplements, etc.
We are not in control of the span of our life. We can only do the best we can with the knowledge we have.

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I give myself 1 hour to research everyday. The more I dig in, the more I understand the importance of estrogen. It is WILD that AI’s are considered the solution. I am in the process of stopping Zoladex and Letrozole due to the debilitating side effects. I am 43. I am interested in the high risk breast clinic you are in. I wonder if I have a similar option.

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Profile picture for shoefly @shoefly

I had Invasive Lobular Carcinoma breast cancer five years ago. I opted out of all the estrogen inhibitors and after two surgeries, I only had radiation therapy. Now five years later I have bone cancer that has metastasized. It is terminal. I wish I would have taken the estrogen blockers.

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That is a hard pill to swallow. As someone that is choosing to stop estrogen blockers it’s my worst nightmare. Especially as a young mom. I hope you’re able to find peace in knowing estrogen blockers don’t bring our risk to zero. You could have spent the last 5 years miserable bc of AI’s and be in the same position today. In my opinion, you were brave to go against the grain. You were brave to advocate for wellbeing. I hope that same bravery serves you well as you fight through this next chapter.

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Profile picture for srussell @srussell

I give myself 1 hour to research everyday. The more I dig in, the more I understand the importance of estrogen. It is WILD that AI’s are considered the solution. I am in the process of stopping Zoladex and Letrozole due to the debilitating side effects. I am 43. I am interested in the high risk breast clinic you are in. I wonder if I have a similar option.

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The structured protocols so many doctors must follow is disappointing, to say the least.
The high risk breast clinic I just switched to is part of the Mercy hospital system in St. Louis. I am now able to have ultrasounds in addition to mammograms. I was also offered additional gene testing.
While this is still a structured protocol system, I have more guidance and options.

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