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Thread: DCIS, just had mastectomy, do I really need to take Tamoxifen from now on?

  1. #1
    Newbie New User
    Join Date
    Oct 2013

    DCIS, just had mastectomy, do I really need to take Tamoxifen from now on?

    I just had a unilateral mastectomy due to recent diagnosis for breast cancer (DCIS grade 3 with less than 1mm micro-invasion, 5 lymph nodes removed and tested negative, 0/5, BRAC 1 and 2 gene tested negative). The oncologist said I do not need chemo or radiation, but want me to take Tamoxifen for at least 5 years. Now I am very struggling on whether to take it or not. I really need other patients' help on deciding if I should take Tamoxifen or not. The only reason that I don't want to take the Tamoxifen is because I am scared about getting the possibility of having endometrial cancer, sometimes, my endometrial thickness is already a concern by the radiologist, thus I am desperately hoping to seek real-life experiences and advice from anyone here who has already gone through this.

    My questions are: If you have taken Tamoxifen for years, have you suffered from any significant side effects (particularly uterine or endometrial cancer)? If you had opted not to take Tamoxifen years ago, do you still think it's a good decision or a decision you regret about now? Your views and advice are greatly appreciated!

  2. #2
    Administrator Top User Didee's Avatar
    Join Date
    Jun 2010
    NSW Australia
    Hello. I can not help you with your questions as my cancer is/was a different one.
    Welcome to the forum and I hope somebody will be along who is able to discuss this with you.
    When in doubt or at a crossroads it is always good to get a second or even third opinion which will hopefully help you make the decision.
    Good luck and best wishes.
    Aussie, age 61
    1987 CIN 111. Cervix lasered, no further problems.

    Years of pain, bleeding, women's plumbing problems. TV ultrasound, tests, eventual hysterectomy 2007, fibroids in lining of Uterus.

    Dx Peripheral T Cell Lymphoma stage 2B bulky, aggressive Dec/09.
    6 chop14 and Neulasta.
    Clean PET April/10, 18 rads 36gy mop up. All done May 2010
    Iffy scan Nov. 2011. Scan Feb 2012 .still in remission.Still NED Nov 2012.
    Discharged Nov 2014.

    May/2012. U/sound, thyroid scan, FNB. Benign adenoma.

    Relapse Apr 2016. AITL. Some chemos then on to allo transplant. Onc says long remission was good. Still very fixable.

    SCT Aug 2016

  3. #3
    Newbie New User
    Join Date
    Mar 2014
    I have been on Tamoxifen for 4+ years now and never had any problems with the drug such as hot flashes, sweats, etc. However, I am currently waiting for a biopsy to see if I have some form of uterine cancer, and I have just found out that I have cataracts, 2 types, in both eyes. Once I have my biopsy results I will see my oncologist to discuss the Tamoxifen. I had hoped to be on it for more that five years as breast cancer mets have been the cause of death of three women in my family, including my mom last October. I am still at the point where I think that the side effects are better than the risks. Hope this helps!
    tekkie (WI)
    1st DX 1/5/09: ILC (T1N0M0), LCIS (Tis)
    2nd DX 5/1/09: DCIS (Tis)
    Lumpectomies: 1/19, 5/1, 5/8
    Rads 6/4/09 - 7/20/09: 25 @ 180 cg + 8 boosts @ 200 cg


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