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Taking Tamoxifen long term, between 5-10 years after breast cancer.

Breast Cancer | Last Active: Jan 28 10:14am | Replies (34)
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@suedodier

Hi, I am new to this page. I have been on 20 mg tamoxifen for 4 months. I have debilitating headaches and back/neck pain and fatigue. I’m young ish (53) and typically very active. Did your symptoms ever improve? I just got a refill and it was a different brand so I’m hoping maybe that will help. I’m considering stopping it bc of side effects. I had stage 1 DCIS. No lymph involvement. 20 rounds of radiation. I’m curious if you stayed on tamoxifen.

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Replies to "Hi, I am new to this page. I have been on 20 mg tamoxifen for 4..."
suedodier | @suedodier | Jan 27 1:50pm

I meant IDC not DCIS.

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clo1977 | @clo1977 | Jan 27 2:22pm

Hi, I didn’t tolerate Tamoxifen I started to get ovarian cysts on top of the fatigue and crippling anxiety. I was considering a hysterectomy but oncologist felt that was too aggressive and that I could come off the Tamoxifen. So I am taking half of a 10mg and developed uterine thickening they did a biopsy and that was negative. I continue to take “5mg” half of a 10mg just to say I am doing something but I am not sure I am doing anything with the small dose.

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cfetoday | @cfetoday | Jan 28 8:43am

I had DCIS. I had to have 3 surgeries to get a clear margin. I also had radiation afterwards. I refused to take Tamoxifin or any of the other drugs. Too many debilitating side effects I've read about on this forum and from other people I've spoken with. My chances for recurrence of this cancer is very low. 3 percent. I just felt why would I want a terrible quality of life with a 3 percent risk. I do eat healthier. Broccoli and other cancer fighting foods. Everyone is different though. You have to do what is best for you. God bless

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