DCIS and Bilateral mastectomy, deciding on tamox

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aliciacantu84
aliciacantu84 Member Posts: 13
edited October 2018 in DCIS (Ductal Carcinoma In Situ)

hi sisters,

I was diagnosed with dcis, went through lumpectomy then more dcis was found becaise it was too spread so I decided to go for mastectomy that would prevent me for having rads i also decided on removing the contralateral breast, because it was high level, tumor very big and im 33, so recurrence possibility was high. I thought that removing both would eliminate the need of taking tamox and my doctor just told me yesterday I do need to continue with it

What I’m reading is that the % of recurrence is very low so tamox wouldn’t be much help, on the other hand, lots of girls talking about recurrence after dcis on the remaining tissue.

Any opinions would be appreciated



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  • Nursepatient35
    Nursepatient35 Member Posts: 166
    edited August 2018

    I was diagnosed at age 35 with dcis. I went straight for the bmx. My margins were clear but "close.". Both my breast surgeon and oncologist said that with dcis it's all contained so weren't concerned with how close margins were. I did not have to do tamoxifen since I had a bmx. I would've only done that if I just had a lumpectomy. My tumor however was around 2 cm.

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  • sierramtngirl
    sierramtngirl Member Posts: 30
    edited August 2018

    I'm replying because I'm in a similar situation. Young, big tumor (5 cm DCIS) high grade. Due to all of this, my risk of recurrence is around 7-10% at 10 years, >15% at 20 years (yours is likely similar based on what you posted about your tumor characteristics and your age) I've discussed this with my MO and she felt like tamoxifen would be beneficial in light of that risk. I does cut our risk *statistically* by 1/3 to 1/2. So by that estimation, it would reduce our risk of recurrence from 7-10% at 10 years to somewhere around 3.5-7.5%. For me, it is worth a try. A lot of people have minimal size effects on tamoxifen, and so far mine have been manageable.

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  • Sunshine1970
    Sunshine1970 Member Posts: 18
    edited September 2018

    I am looking for any input. I had dcis as well mine was 8cm,they couldn't get clear margins with the lumpectomy. I also was er-positive 100% and progesterone 98.3 . I only had it in one breast but decided to have double mastectomy. Also had 5 lymph nodes removed and tested negative. My oncologist says I dont need further treatment. I disagree because the size of the mass and it was er positive, it doesnt r7n in my family. My ob/gyn says I should take Tamoxifen or radiation to be sure of hopefully no reacurrance. Mot sure what to do,my surgeon cant guarantee she removed every single cell in the breast,mo one can do that. So shouldn't I take precautions to prevent it?

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  • LAstar
    LAstar Member Posts: 1,574
    edited October 2018

    Do what gives you peace. My diagnosis was similar and I'm 6.5 years out with no recurrence so far. Some would say we were overtreated, but we are the ones that must live with the consequences of undertreatment. Radiation might be a good tool to reserve in case of recurrence. I'm no expert! Best wishes in finding peace of mind.

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