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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@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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@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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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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@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 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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@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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@catbuddy

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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Thank you for responding! Your input has helped me to understand that so many of us are moving along in the near panic mode, listening and reading so much about treatments and doctors opinions. I just want an uneventful future with best outcomes based on my own body, not the statistical majority. I will move along cautiously getting followup mammos and eating healthy/exercising. Blessings to you❤️

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@catbuddy

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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cat buddy I agree with you, I am 81. I did just what you did.

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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 had two right breast tumors; 99% ER +, 98%PR+, HER2-, stage 2 IDC. Had unilateral mastectomy , no chemo recommended as a very favorable ONCOTYPE, and opted out of radiation ( which seemed scary to me) . Also breast surgeons did not see big value in my case. Doing annual MRI and Mammo at 6 months intervals. Both negative one year out from first (mastectomy ) surgery.

On AI for 11 months, mild joint discomfort worked out with walking, stretching, yoga and resistance ( for bones). Very effective and helpful… don’t even need Tylenol… but I worried about the unseen(felt) side effects.

Mitigation is my game!

BONE HEALTH: D3, K2, multi, curcumin 95, C, and absorbable food based calcium ( for bones) niacin ( for cholesterol). Try to hit 1000 grams of calcium from food plus from 200 multi-Vit. Biotin for some hair thinning.

Did DEXA last week and essentially no change from baseline 3 years ago and pre AI last April. One hip improved .1, one hip decreased .1, L4 lost .1 ( all statistically insignificant). I do consult with endocrinologist as part of mitigation team.

HEART HEALTH :Cholesterol slightly elevated but so was HDL so good ratio remained the same .
Red meat 1-2x month ( maybe), and almost ZERO processed food. Sodium is a bone killer.

Had a calcium score done to make sure plaque not building up. Result :ZERO! Shocked and relieved. ( I thank K2 for this )

Bottom Line: NOT everyone has a significantly difficult reaction ( response) to AI. If it may be beneficial why not try… it is a daily oral pill which has a 50 hour half life that can be stopped at any moment.

I feel safer on this med; I envision it as a daily protection against breast cancer.

I realize that my experience with side effects are mild and tolerable and that’s not the case for some, but it may be worth trying.

Blessings on the path. 🌸

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@anjalima

I had two right breast tumors; 99% ER +, 98%PR+, HER2-, stage 2 IDC. Had unilateral mastectomy , no chemo recommended as a very favorable ONCOTYPE, and opted out of radiation ( which seemed scary to me) . Also breast surgeons did not see big value in my case. Doing annual MRI and Mammo at 6 months intervals. Both negative one year out from first (mastectomy ) surgery.

On AI for 11 months, mild joint discomfort worked out with walking, stretching, yoga and resistance ( for bones). Very effective and helpful… don’t even need Tylenol… but I worried about the unseen(felt) side effects.

Mitigation is my game!

BONE HEALTH: D3, K2, multi, curcumin 95, C, and absorbable food based calcium ( for bones) niacin ( for cholesterol). Try to hit 1000 grams of calcium from food plus from 200 multi-Vit. Biotin for some hair thinning.

Did DEXA last week and essentially no change from baseline 3 years ago and pre AI last April. One hip improved .1, one hip decreased .1, L4 lost .1 ( all statistically insignificant). I do consult with endocrinologist as part of mitigation team.

HEART HEALTH :Cholesterol slightly elevated but so was HDL so good ratio remained the same .
Red meat 1-2x month ( maybe), and almost ZERO processed food. Sodium is a bone killer.

Had a calcium score done to make sure plaque not building up. Result :ZERO! Shocked and relieved. ( I thank K2 for this )

Bottom Line: NOT everyone has a significantly difficult reaction ( response) to AI. If it may be beneficial why not try… it is a daily oral pill which has a 50 hour half life that can be stopped at any moment.

I feel safer on this med; I envision it as a daily protection against breast cancer.

I realize that my experience with side effects are mild and tolerable and that’s not the case for some, but it may be worth trying.

Blessings on the path. 🌸

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Sounds like you are following through and staying ahead of most concerns. Blessings for your future health walk!

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