Bilateral mastectomy with onco type 20

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Mick68
Mick68 Member Posts: 3 Member

My name is Michele. Back in 2006 when I was 53, I was diagnosed with stage 1 aggressive cancer. Surgeon did a lumpectomy and 6 weeks of radiation. Took Tamoxifen for 10 years, and I’ve been clear for 17 years. Then Covid hit. My husband had pulmonary embolisms, so I took the vaccine to help protect him. Then, this past October, not only did the cancer return, but it returned in both breasts with 2 different types of cancer! Both my oncologist and my surgical oncologist had never seen this before. Dumbfounded. In December of 2023, I had a bilateral mastectomy with no reconstruction. I’m 70 now and flat. My oncotype score was a 20. No need for chemo, but oncologist put me on 20mg Tamoxifen for 5 years bc of ER+. My reaction to the tamoxifen is horrible this time around.

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  • Mick68
    Mick68 Member Posts: 3 Member
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    Sorry! Sent too soon. My hair is falling out; terrible mood swings; hot flashes; stomach issues; depression. It’s truly horrible. If I don’t take the Tamoxifen, the chances of distant recurrence is 11 to 15%. That’s an 85% chance that it won’t. I decided to stop the Tamoxifen and I will see my oncologist on the 26th of this month for bloodwork.

    Has anyone experienced a similar situation? I’m desperate and afraid and confused. Thank you for reading this.

  • RocDocVic
    RocDocVic Member Posts: 107 Member
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    So sorry to read this. Is there any way to reduce the dosage of the Tomoxifen? I'd ask your Oncologist about this.

    Yes, I've read from other women who have been diagnosed with 2 subtypes of cancer. What are they? Are they both hormone positive but different in HER2 status and that's why the Tomoxifen?

  • Mick68
    Mick68 Member Posts: 3 Member
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    Thank you for your response. I will ask my doctor when I see him on the 26 of this month, but I had to stop it last week because my hair is falling out, and I’m just having other terrible side effects.
    I’m looking at my report now and it says that both sentinel nodes were negative for metastatic carcinoma. No other lymph nodes taken. Only had 2 drains. Left breast is invasive ductal carcinoma and right breast reads invasive lobular carcinoma. It reads ER Status Positive 90%. PgR status positive 90%. Her-2 status is negative.

    Had the BRCA done and it was negative, as was my daughter’s.
    My oncologist first wanted me to take an AI and infusion? I read the side effects and they were terrible. That’s when he offered the tamoxifen, but he told me it was my choice. It didn’t bother me years ago, but now it has disrupted my whole life.