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Lumpectomy vs. Mastectomy with ATM gene variant?

lollypopgirl17 Member Posts: 15

Hello everyone. I have my last chemo appointment on Friday (so worried it's coming to an end) and met with the breast surgeon today. She said that I'm still a good candidate for lumpectomy, even though she discussed a mastectomy as well.

She also told me that I had a modest response to chemo (Taxol every week plus Herceptin and Perjeta every 3 weeks). My tumor (IDC right breast) shrunk from about 2.1 cm to about 1.8 cm. I'm glad it shrunk somewhat but very disappointed it hasn't shrunk more.

Anyway, I went to this appointment thinking that I knew I wanted a mastectomy because I have a variant of the ATM gene. But now considering a lumpectomy.

Has anyone else in my situation had a lumpectomy? How long has it been since your surgery and how are you doing? And what helped you decide between the two options?

Thank you. 🙂


  • minustwo
    minustwo Member Posts: 13,002
    edited January 2022

    It's such a personal decision. How old are you? How many times have you been recalled for imaging in the past? How much tolerance do you have for "hoping" it's gone. Assuming you're HER2+ since you mention Herceptin. Since you didn't have pCR, that would influence my decision. Are you still planning radiation? With a lumpectomy only that's pretty much standard of care.

  • lollypopgirl17
    lollypopgirl17 Member Posts: 15
    edited January 2022

    Hello MinusTwo.

    Thanks so much for your post. I'm 47...I don't know why it doesn't show up in my signature.

    Will you need surgery as well?

    I don't want to stress and have nightmares about yearly mammograms like I did this past year. I have had a biopsy in the past, but the two I had before and after my diagnosis were traumatizing. I am HER2+ and ER+ and PR+. I'm worried about radiation, about having to have more surgeries in case a lumpectomy doesn't get all the cancer.

    So maybe a mastectomy might be the better option for me. I am going to get my gynecologist's opinion and another oncologist because I value their opinions.

    Thanks again for your feedback.

  • minustwo
    minustwo Member Posts: 13,002
    edited January 2022

    Lolly - I was tired of 'call backs' every single time for 30 years so when they found DCIS in one breast I had them both off & TEs placed for reconstruction - however I was 67 so there's a difference. GOod thing O chose that pat because they found issues in the "good" breast. Because they got clear margins - no other treatment & I "never had to worry about it again".

    Oops - never say never w/cancer. Unfortunately a micromet escaped prior to surgery & two years later I found a swollen lymph node at my collar bone. So now it's turned into IDC and HER2+. Neoadjuvant chemo, no pCR, ALND surgery, more chemo, rads & herceptin for a year. Oh well. Seven years down the road from the second treatment I'm still here I doing fine.

    Radiation was the least of my problems. It caused deep fatigue, but I got through it with no real problems.

    But the point - I've never regretted my BMX. I've never regretted my silicone implants. Oh well yeah, I had very sensitive nipples and they were unable to save those - so I miss that sensation. Something to consider. And I was 20 years older than you - and I think that makes a difference too.

    Edited to say - I hope someone with your genetic ATM variant jumps in. I was just ER/PR negative & HER2+ with no genetic testing.