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Positive DCIS margins: Concerned about treatment

Posted by auksst @auksst, Jun 28, 2021

My 42yr old daughter had mastectomy with reconstruction at the same time. She is HR/PR+ HER-, No radiation, no chemo (oncotype 15), She also had 2 IVDC tumors in the same breast.No lymph node involvement. Stage 1, grade 2. She is on tamoxifen. May be starting Lupron. Anyone else not have any particular treatment for the positive DCIS margins? Concerned.

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auksst | @auksst | May 11, 2022
In reply to @tcal "Hi, did your daughter end up getting radiation? I’m in a very similar boat as her...." + (show)
@tcal

Hi, did your daughter end up getting radiation? I’m in a very similar boat as her. I’m 41 and just had a bilateral mastectomy with reconstruction. I had ER/PR+ HER2- IDC/DCIS stage 1/grade 2 no lymph node involvement and low oncotype. I need to decide if I want radiation since I had a positive margin for the DCIS. I’m planning on taking Tamoxifen for the next 5 years. I’m leaning on not getting radiation because I worry about all the damage it can cause internally.

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She did not have radiation. The oncologist and surgeon did not think all the side effects of the radiation and risks with that were necessary but did offer to get an opinion from the radiologist. My daughter did not want radiation and so did not meet with a radiologist. She is on tamoxifen for 5 years and then maybe more.

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tcal | @tcal | May 11, 2022
In reply to @auksst "She did not have radiation. The oncologist and surgeon did not think all the side effects..." + (show)
@auksst

She did not have radiation. The oncologist and surgeon did not think all the side effects of the radiation and risks with that were necessary but did offer to get an opinion from the radiologist. My daughter did not want radiation and so did not meet with a radiologist. She is on tamoxifen for 5 years and then maybe more.

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How is she doing on the Tamoxifen? Any side effects? I’m supposed to start soon.

REPLY
auksst | @auksst | May 11, 2022

Her biggest complaint is brain fog. She takes Effexor for the mood swings and gabapentin for night sweats....both side effects. Except for the brain fog, she feels pretty good. Hopefully the brain fog will clear up. She has been on tamoxifen about 10 months now.

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