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Aromatase Inhibitors: How to choose and manage side effects?

Posted by shebell @shebell, Sep 11, 2024

I was diagnosed in April 2024 stage 1 invasive ductal carcinoma - estrogen positive. I had lumpectomy and radiation my onco score was 12 so was able to skip chemo therapy. I have tried Anastrozole and had terrible side effects I have not tried Tamoxifen yet and am seriously thinking about forgoing any AI long term treatment has anyone else made that choice?

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llthomson | @llthomson | 6 days ago

Can you say which kind of breast cancer did you have 33 years ago?

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lifetraveler | @lifetraveler | 5 days ago
In reply to @jardinera25 "Yes, back when I was 43 (33 years ago) I had a mastectomy followed by 6..." + (show)
Profile picture for jardinera25 @jardinera25

Yes, back when I was 43 (33 years ago) I had a mastectomy followed by 6 mo. of chemo, but no radiation. The chemo threw me into menopause; the doctor at that time wanted me to go on Tamoxifen but I said no due to the drug not having been tested yet on pre-menopausal women. He said they didn't want my periods to come back. I didn't sass him, but I refused the drug and felt better when periods returned soon.....I felt normal again and had 4 kiddos to finish raising. Menopause returned naturally at age 50, but hot flashes were a bear for 7 years, then mild after that. They never really stopped.
So I went for about 30 years before a new tiny tumor on the other side, at age 73. Had a lumpectomy. They also found a bigger recurrence under my ribs near the first site, but amazingly it has never metasticized. I wonder if the hot flashes long term were responsible for that? Anyway, that's my story for saying NO to tamoxifen when young.

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@jardinera25

Hi! jardinera:

Thanks for sharing your heart felt experiences with us to help us!

I am so sorry for the recurrence of this BC disease showing its ugly head after your mastectomy followed by 6 months of chemo treatment 30 years ago:( I truly admire your perseverance with wisdom and strength that raised your 4 young children successfully into their adulthood with a loving mother alongside them! Please don't blame yourself for not taking Tamoxifen 30 years ago after your first BC treatments! Surely your priority then was raising your young kiddos, thus you didn't want any medications to complicate your overall wellbeing at that time for their sake. None of us can predict the future in any way. I admire your courage and thank God that your BC has never metastasized! Are you under any active treatment right now after the lumpectomy surgery 3 years ago? Pray and hope you've been feeling well since.

Wishing you all a better journey ahead with hope, peace and love!

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jardinera25 | @jardinera25 | 3 days ago

I really can't remember clearly what kind of BC I had, I think it was DCIS but will have to look it up. They found a quarter inch tumor with the mastectomy, & then another in the same breast that hadn't shown on the mammogram. So I was glad I'd decided to do a mastectomy. After the lumpectomy 3 years ago in the other breast I decided not to have radiation since the spot was only .7 cm. But it was through other scans for another issue that they saw a large "shadow" in the chest wall behind the mastectomy. So after a breast MRI with contrast and an ultrasound-guided biopsy of the area, they confirmed an 8cm breast tumor under my ribs directly below where the original tumor had been long ago. Dr. calls it a recurrence, since it did not metastasize. Weird, I know. So I've tried two Aromatase inhibitors for 4 months each (nasty side effect of messing up my blood pressure), 4 months of Fulvestrant shots (gave me leg pains & some vein insufficiency so went off it), then a short stint on Tamoxifen which gave me headaches & joint aches even at 5 mg., so went off it too. It has shrunk by 2cm. I'm not sure whether to try anything else (she won't give me Verzenio unless I take it with a hormone blocker, but I'm done with those). I'm afraid a two year effort with all these drugs, not to mention the big effort when I was 43 with C, A, F drug regimen makes me want to just skip them all. Maybe try a "functional doctor" in town for new ideas. It's bee a great Spring gardening with no drugs. Thanks, Life Traveler, for your thoughtful words. ~ Patty the jardinera

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jmab | @jmab | 2 days ago
In reply to @jardinera25 "I really can't remember clearly what kind of BC I had, I think it was DCIS..." + (show)
Profile picture for jardinera25 @jardinera25

I really can't remember clearly what kind of BC I had, I think it was DCIS but will have to look it up. They found a quarter inch tumor with the mastectomy, & then another in the same breast that hadn't shown on the mammogram. So I was glad I'd decided to do a mastectomy. After the lumpectomy 3 years ago in the other breast I decided not to have radiation since the spot was only .7 cm. But it was through other scans for another issue that they saw a large "shadow" in the chest wall behind the mastectomy. So after a breast MRI with contrast and an ultrasound-guided biopsy of the area, they confirmed an 8cm breast tumor under my ribs directly below where the original tumor had been long ago. Dr. calls it a recurrence, since it did not metastasize. Weird, I know. So I've tried two Aromatase inhibitors for 4 months each (nasty side effect of messing up my blood pressure), 4 months of Fulvestrant shots (gave me leg pains & some vein insufficiency so went off it), then a short stint on Tamoxifen which gave me headaches & joint aches even at 5 mg., so went off it too. It has shrunk by 2cm. I'm not sure whether to try anything else (she won't give me Verzenio unless I take it with a hormone blocker, but I'm done with those). I'm afraid a two year effort with all these drugs, not to mention the big effort when I was 43 with C, A, F drug regimen makes me want to just skip them all. Maybe try a "functional doctor" in town for new ideas. It's bee a great Spring gardening with no drugs. Thanks, Life Traveler, for your thoughtful words. ~ Patty the jardinera

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@jardinera25 I'm interested to know what the plan is for the tumor under your ribs? Are they hoping to shrink it enough to be able to surgically remove it? I take 10 mg (half-dose) of Tamoxifen & am doing ok but I understand your feelings & I also wish I didn't have to take it!

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