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 athena78 @athena78

Hi..I had breast cancer recurrance after mascetomy 2 years ago ..did not take aromatase then it spread to my bones..or previously when I had a lumpectomy years ago..
I am taking it now and it works only wish I had before ..there are some side effects that you can counter act with exercise/ diet/less stress ...acupunture etc .hope this helps your decision..

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@athena78, I'm sorry to hear that you experienced a recurrence. Your post is a welcome addition to people who are making the challenging decision whether to take an aromatase inhibitor or not. As you know, the decision is really hard. While you wish you had taken it before the cancer had spread, you made your decision with the information and understanding you had at the time.

I see that you are now on treatment and have found lifestyle approaches like exercise, diet and reducing stress to help manage side effects.

For newly diagnosed members who are struggling with the decision, what do you wish you had understood better to inform your decision 2 years ago?

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Where did it say 2%? I will ask my oncologist. I took it pre surgery but they stopped it after 5 weeks because I am getting occipital neuralgia and it was making it worse, aka, very bad headaches like migraines every few hours.

As far as everything else is concerned, I could manage the pain it caused my arthritic joints but not sure how that works for 5 years. They will try a new medication after surgery as it does keep away reoccurrence of the cancer. I am going to a neurologist after surgery although trying to get one before if an opening comes up. The pain is still there even after stopping the medication.

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Profile picture for Colleen Young, Connect Director @colleenyoung

@athena78, I'm sorry to hear that you experienced a recurrence. Your post is a welcome addition to people who are making the challenging decision whether to take an aromatase inhibitor or not. As you know, the decision is really hard. While you wish you had taken it before the cancer had spread, you made your decision with the information and understanding you had at the time.

I see that you are now on treatment and have found lifestyle approaches like exercise, diet and reducing stress to help manage side effects.

For newly diagnosed members who are struggling with the decision, what do you wish you had understood better to inform your decision 2 years ago?

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The pain it was going to cause to my joints. The pain of a very bad headaches. Some things I can live with, others are very tough. My friend takes the same Ai and has no symptoms except weight gain. I am jealous.

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It is amazing how different people can have different experiences on AIs. I’ve tried anastrozole, then Letrozole, and now about to try Tamoxifen. Hoping it’s better. My main complaints on AIs are arthritic pain and anxiety. My friend who has a precancerous tumor had to discontinue tamoxifen due to severe irritability that led to crying fits. I will not tolerate that if the happens to me. I want to live long into my retirement years but not with chronic pain, anxiety or crying fits. Wish me luck on my 3rd attempt to follow doctor’s orders and reduce my recurrence risk.

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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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Profile picture for jig4891 @jig4891

It is amazing how different people can have different experiences on AIs. I’ve tried anastrozole, then Letrozole, and now about to try Tamoxifen. Hoping it’s better. My main complaints on AIs are arthritic pain and anxiety. My friend who has a precancerous tumor had to discontinue tamoxifen due to severe irritability that led to crying fits. I will not tolerate that if the happens to me. I want to live long into my retirement years but not with chronic pain, anxiety or crying fits. Wish me luck on my 3rd attempt to follow doctor’s orders and reduce my recurrence risk.

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Good luck with new medication @jig4891. I have tried anastrozole for a year, exemestane for another year. Now I’m on Letrozole. If Tamoxifen doesn’t work out, try exemestane. I was ok with exemestane until BMX, then I experienced petechiea. My onco said it could be because of the trauma caused by the surgery. She said if Letrozole doesn’t work out, I can try exemestane again. So far I have mild joint pain, aura headache every few weeks. Keep trying until you find something that you can tolerate.🤗

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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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I’m sorry that it happened to you! AIs are not always effective. I just take AIs with the hope that they work for me. What are your treatments now. There are quite a few people in this Mayo Connect in remission after bone cancer treatments. Best of luck to you.

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I am 68 and made the decision not to take them. I am still within my first year (6 months out) I had the exact same reduction in risk as you (2%), and while I know most will think I am looking at life through rose colored glasses, I am confident major changes in treatment are coming, and I choose not to do that to my body. It's a gamble, but a risk I am all in on. Good luck! I did have 5 sessions of targeted radiation. After that, the oncologist told me AI's would reduce my overall risk 1 %. No decision is a bad one, just a personal one. Make it and don't look back! Trust your gut.

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Thanks for all the replies; you all are wonderful!

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My wife is 77 and trying to make the same decision. Grade 1 negative nodes. She took letrozole for one year but had severe bone pain. She stopped when her bone density went to t -2.3. She did get an infusion of zolandronate but were upset that they didn’t start that when they started the AI as a lot of the literature suggests

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