Aromatase Inhibitors: Did you decide to go on them or not?

Posted by nanato6 @nanato6, Oct 12, 2018

Nanaloves: I’m about to start arimidex and just feel that the contraindications , bone issues etc. are overwhelming. I’m 70 years old, dodged a bullet I feel with zero stage DCIS but the follow up is pretty much no different then if it was more aggressive. I’ve just done 33 treatments of radiation and now they advise arimidex as a preventative. I’m not sure with the beginnings of arthritis and lower back. sensitivity already that I should take it. Anyone not take it and not have a recurrence within the 5 years.

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@orsejr

I have not chosen to take AI or tamoxifen because I couldn’t tolerate the tamoxifen and I have osteoporosis so not eligible for AI unless I take Zometa with it. My Oncotype was 14. IDC estrogen +, 15 mm, negative nodes and grade 2. I am told grade doesn’t really matter anymore unless grade 3. Doctors are relying more on Oncotype score. I have 8% chance of recurrence without endocrine therapy . I was diagnosed at age 67. I am almost 69. I am involved with Signatera . Look it up.

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Thank you for your response😘 I will look up the info you passed on. Hoping and praying we can move on to a better and healthy life style that is filled with blessed days of feeling good again!

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I have also chosen not to take the meds, because the increase in probably protection is minimal and because of the possible side effects (I already experience joint pain periodically and am not interested in another menopause!). It’s more a quality-of-life decision, because the increase in probable protection is so small.
I’m 73, Left breast DCIS, stage 0, highly estrogen positive and aggressive cells. The tumor did not leave the milk duct. Lumpectomy was Dec 12, wide margins. Pathology on margins, left and right breasts was negative. I had 16 sessions of radiation, which the radiation oncologist told me would bring me up to about 90% unlikely to get a recurrence. The AI would have added about 5% or so. To me, not enough at that point for me to do the AIs.
Good wishes for a successful outcome, whatever you choose to do!

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@elliej

I, too am awaiting a response from anyone who had a low stage/grade w/radiation and has Not chosen to take the AI. Thank you all❤️

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I have not chosen to take AI or tamoxifen because I couldn’t tolerate the tamoxifen and I have osteoporosis so not eligible for AI unless I take Zometa with it. My Oncotype was 14. IDC estrogen +, 15 mm, negative nodes and grade 2. I am told grade doesn’t really matter anymore unless grade 3. Doctors are relying more on Oncotype score. I have 8% chance of recurrence without endocrine therapy . I was diagnosed at age 67. I am almost 69. I am involved with Signatera . Look it up.

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I, too am awaiting a response from anyone who had a low stage/grade w/radiation and has Not chosen to take the AI. Thank you all❤️

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@windyshores

@beet8881 have you considered the Breast Cancer Index test? It uses your post surgical specimens to test your risk of recurrence and whether there is benefit to extended therapy with aromatase inhibitors. The test is done after 5 years of meds. Mine said high risk but not further benefit so I stopped letrozole.

My doc didn't know about it even though it is in the NCCN guidelines. I called the BCI company and got the paperwork and took it to my doc.

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I’m constantly amazed at the self advocacy, needed by survivors, to advance their treatment concerns. On two occasions I have “ taught “ docs well known facts. It’s very concerning. It’s a very complicated subject and I imagine with so much information it’s hard for a human being with a like outside of their medical office to keep up.

So… thank you for this wonderful group of survivors as we journey on! 🌸

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@beet8881

I am approaching six years on Anastrozole. I also take Zometa infusions every six months. Joint has been bad this past year. In order to keep going I have to take ibuprofen which is dangerous due to kidney compromise. The last doctor offered 2 choices: quit Anastrozole or switch to another aromatose inhibitor. I opted for a 3rd choice: continue Anastrozole and ibuprofen. From all I have read and heard, Anastrozole is better than the other choices in preventing a recurrence. Also the others drugs have many of the same side effects. I have seen 6 different doctors (same office) in the past 6 years so no continuity in treatment and I feel like I am flying blind.

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@beet8881 have you considered the Breast Cancer Index test? It uses your post surgical specimens to test your risk of recurrence and whether there is benefit to extended therapy with aromatase inhibitors. The test is done after 5 years of meds. Mine said high risk but not further benefit so I stopped letrozole.

My doc didn't know about it even though it is in the NCCN guidelines. I called the BCI company and got the paperwork and took it to my doc.

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I am approaching six years on Anastrozole. I also take Zometa infusions every six months. Joint has been bad this past year. In order to keep going I have to take ibuprofen which is dangerous due to kidney compromise. The last doctor offered 2 choices: quit Anastrozole or switch to another aromatose inhibitor. I opted for a 3rd choice: continue Anastrozole and ibuprofen. From all I have read and heard, Anastrozole is better than the other choices in preventing a recurrence. Also the others drugs have many of the same side effects. I have seen 6 different doctors (same office) in the past 6 years so no continuity in treatment and I feel like I am flying blind.

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@moverland

Yes! I had calcification s show up @ the site of my first lumpectomy in 2018. I had a second lumpectomy in 2022 in a totally different wuandrant of the same breast. I did not take Aromatse Inhibitor after first cancer. But am on Letrozole now. . I have to go back in 6 months for follow up. Makes me somewhat concerned😒

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I have been on A1 for a year and will continue to fight with the side effects. ❤️

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@elliej

Would love to see feedback for your question about not taking AI and 5 year recurrence. I too am concerned. Sending hugs.

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I tackled my side effects to A1 one by one and wanted to quite a couple of times but waded thru it. Still have leg issues but learning how to deal with that too. I keep remembering my favorite verse. Sometimes a mountain is more appreciated from the fields than in the climbing of it Can’t wait to view all this from the fields (with confidence)!

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@moverland

Yes! I had calcification s show up @ the site of my first lumpectomy in 2018. I had a second lumpectomy in 2022 in a totally different wuandrant of the same breast. I did not take Aromatse Inhibitor after first cancer. But am on Letrozole now. . I have to go back in 6 months for follow up. Makes me somewhat concerned😒

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Thank you so much for responding. As much as I hated the side effects of Anastrozole I have heard good results from it. So I will stick with it and hope for the best. Will see what my right breast momma followup shows on Wednesday.
Thanks again!!

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