Side Effects of Aromatase Inhibitors

Posted by coldia @coldia, Mar 9, 2023

It was suggested that I start on an AI after my upcoming lumpectomy. I am just concerned about some of the side affects that I am reading about but wondering if the risk of not taking them and having another recurrence is worth it. I would appreciate any thoughts or experiences anyone has had when taking them. Thank you ☺️

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There are always reasons, exceptions. I was just curious, but your answer certainly makes sense and I pray for your continued good living. God Bless

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@surpriseca

I have been taking Aromasin (Exemestane) for just about 4 months after lumpectomy for DCIS/5 radiation treatments. The start was kind of rough with lots of fatigue and generally just not feeling well. Over time I am feeling better, but still have poor sleep at times which can be a side effect. I feel like at age 61 I want to stay on the medication, but have to weigh against side effects and quality of life. But I feel safer on them than not....

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I have been taking exemestane for about 6 weeks. I have noticed that it is raising my blood sugar which is not a listed side effect. I tried both the other Al meds. I started the meds in December 2020. I had a ischemic stroke in September of 2022 while on anastrozide. Since researching I’m scared being on the meds could have caused the stroke because I have hypertension. I’m so fortunate it was a mild stroke. But I am fearfully of another stroke. I am going for a second opinion from another oncologist in April. I did not feel my oncologist took the stroke very seriously.
I’m going to try and take the exemestane every other day. I’m fearful to not take the medicine.

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@coldia

I too think about quality of life and how my day to day life might be affected. I am 64 and this is my 3rd lumpectomy. They talked about mastectomy but as long as it’s staying in the duct (by being caught early) I would rather not go that route. Since I seem prone to BC, I think shutting down the estrogen is my best hope to stop it so I am leaning towards giving it a try and see how I do.

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May I ask how you monitor? How often do you have mammos, MRIs etc? You’ve been able to catch it early all 3 times. Thank you.

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@brighterdays

May I ask how you monitor? How often do you have mammos, MRIs etc? You’ve been able to catch it early all 3 times. Thank you.

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Hello,
The first time it was stage 1 but still early although it had left the duct. I had radiation and 6 month mammograms for a year. I took Tamoxifen for about 3 years until I started having some nerve issues. I continue to do yearly mammograms and then 4 years ago I had my 2nd one but thankfully stage zero. The one I am dealing with now is also stage 0 and surgery is next week. All have been caught on mammograms. They want me to start aromatase inhibitors which I’m a little nervous about after hearing so many side effects. I have heard though that they can protect you for up to 15 years. I will ask about that and having 6 month mammograms. They have not suggested any additional testing such as MRI’s etc. I feel fortunate that my cancers have not been the aggressive type as so many have unfortunately had to deal with. And maybe that is why if they are slow growing the surgeon didn’t recommend 6 month mammograms but I will still inquire with my GP.

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@brighterdays

May I ask how you monitor? How often do you have mammos, MRIs etc? You’ve been able to catch it early all 3 times. Thank you.

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Need MRI’s
A lump was found that a Mamm & Ultrasound did not find

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Diagnosed with IDC stage 1 Nov 2021
Lumpectomy Dec 2021
Radiation 21 sessions Feb 2022
Started Anastrozole March 2022

I was also concerned about side effects but I trust my Oncologist. My daily aches and pains are minimal which I credit to daily walking and strength training. I started taking Fosomax because a DEXA scan in July 2022 shows severe osteopenia in left hip. That doesn’t stop me from working out. I’m also monitoring my bad cholesterol and may have to start a low dose statin if I can’t reduce it through diet changes. Overall, I am OK with taking the AI for another 4 years or more for the peace of mind.

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I had a mastectomy as a result of stage 2 invasive lobular carcinoma, opting for that surgery to avoid radiation and chemotherapy. I am now on aromatase inhibitor but I have told my oncologist that I would continue only if I don’t have side effects that affect my quality of life. Ultimately this seems to be a personal decision made with your oncologist but my age and good health have affected my decision making . So far, I have had some knee discomfort that I did not have prior to taking anastrazole.

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@alicejoan

I had a mastectomy as a result of stage 2 invasive lobular carcinoma, opting for that surgery to avoid radiation and chemotherapy. I am now on aromatase inhibitor but I have told my oncologist that I would continue only if I don’t have side effects that affect my quality of life. Ultimately this seems to be a personal decision made with your oncologist but my age and good health have affected my decision making . So far, I have had some knee discomfort that I did not have prior to taking anastrazole.

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@alicejoan Weighing quality of life on aromatase inhibitors versus quality of life with a cancer recurrences really depends on our individual situations, as you wrote.

I do think about an article I read that surgeons should not tell us "we got it all," which I found impactful.

For joint discomfort, I found that exercising 40 minutes helped a lot. At 20 minutes pain increased but if I kept going, it helped a lot. My oncologist said she had heard that from a lot of patients.

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@gldilli

Diagnosed with IDC stage 1 Nov 2021
Lumpectomy Dec 2021
Radiation 21 sessions Feb 2022
Started Anastrozole March 2022

I was also concerned about side effects but I trust my Oncologist. My daily aches and pains are minimal which I credit to daily walking and strength training. I started taking Fosomax because a DEXA scan in July 2022 shows severe osteopenia in left hip. That doesn’t stop me from working out. I’m also monitoring my bad cholesterol and may have to start a low dose statin if I can’t reduce it through diet changes. Overall, I am OK with taking the AI for another 4 years or more for the peace of mind.

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Read comment from vivi1 on treatment study by Tufts.

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@coldia

Hello,
The first time it was stage 1 but still early although it had left the duct. I had radiation and 6 month mammograms for a year. I took Tamoxifen for about 3 years until I started having some nerve issues. I continue to do yearly mammograms and then 4 years ago I had my 2nd one but thankfully stage zero. The one I am dealing with now is also stage 0 and surgery is next week. All have been caught on mammograms. They want me to start aromatase inhibitors which I’m a little nervous about after hearing so many side effects. I have heard though that they can protect you for up to 15 years. I will ask about that and having 6 month mammograms. They have not suggested any additional testing such as MRI’s etc. I feel fortunate that my cancers have not been the aggressive type as so many have unfortunately had to deal with. And maybe that is why if they are slow growing the surgeon didn’t recommend 6 month mammograms but I will still inquire with my GP.

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Most of the side effects I had were caused by the fillers they use in AIs. I did have a last ditch effort by trying pure aromatase, which I lasted much longer on. If your oncologist will prescribe them for you, they are much easier on the joints and almost all other effects. I still could not tolerate and ended up stopping and going on an all whole food plant based no oil diet and I have been doing much much better. I lost 70 pounds, (gained 30 on AIs) and I walk 1 to 2 miles every day. Never felt better in past 40 years!

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