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48 years old with stage 1 ILC - Tamoxifen Advice

Posted by halperp @halperp, Aug 16, 2023

Hello!
I'm 48, diagnosed with stage 1, grade 1 ILC in Feb 2023 after 9th annual routine mammogram. Lumpectomy in April and 3 weeks of radiation finished in June, and now supposed to start tamoxifen.

A few details:
tumor 1.6cm, nodes clear
no family history/genetics
grade 1, stage 1
E/P +, Her 2 Neg
Ki-67 5%
Oncotype 17 (no chemo recommended)

I'm still pre-menopausal, have 3 kids ages 19, 17, 15, work full time job and been married for 23 years. I have 3 sisters and menopause is later in my family, mid-50's.

Current oncologist recommendation is for tamoxifen daily for 5-10 years. Chance of reoccurrence with tamoxifen 5%, without, 10-15%.

I'm dreading starting the tamoxifen. I am fit and healthy, and my biggest concern is irritability/memory issues/mood swings/lack of sex drive/weight gain.

The plan with my oncologist is to give it 3 months, see how I tolerate it, then make a decision.

I'm curious what others have done in similar situations? If you tried it and had side effects, how long did they last? If you tried it and went off, how long until the side effects disappeared? I get so many mixed opinions, mostly from doctors who haven't been on it. Whenever I ask a woman who is on it - they have pretty negative feedback, but take it because of their type of cancer (more aggressive, etc).

Rationally, I know I should try it for 3 months. I might have no side effects and tolerate it great. But I finally feel good again, and I am dreading the trial period.

I appreciate any advice/opinions/experiences you have!

Trish

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cmocmo | @cmocmo | 3 days ago
In reply to @susansharits "I am glad I found this. I am 48 and diagnosed with IDC, stage 1, grade..." + (show)
Profile picture for susansharits @susansharits

I am glad I found this. I am 48 and diagnosed with IDC, stage 1, grade 1, ER 81-90%, PR 91-100%, KI - 5-10%, HER2 is 1+ negative. I had a successful lumpectomy and start radiation in four weeks. I am also perimenopausal and very concerned about starting Tamoxifen. What did you decide to do on taking it vs not? I would love any feedback from anyone having gone through this as well. Thankful for all the comments I have read on this thread.

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@susansharits I was diagnosed in 2023 and was also perimenopausal at the time. I took Tamoxifen for 18 months, then switched to Letrozole once I became menopausal.

The only troublesome side effect I experienced with Tamoxifen was muscle spasms in my calves and feet. They felt like a normal charley horse on steroids. Sometimes they would wake me up at night, and I’d have to get up and walk around or stretch until they passed.

Once I stopped taking Tamoxifen, the spasms went away. Even so, the side effect was never bad enough to make me want to stop taking Tamoxifen.

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