New diagnosis & upcoming surgical appt

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marjie
marjie Member Posts: 1,134
edited November 2020 in Second or Third Breast Cancer

So (tosses in my 10 yr chip), my second kick at the can is high grade DCIS in my other breast. I have an appt with the surgeon in a few weeks and this time around, I really think I'd rather just go for mastectomy. First time, whether I had mastectomy or lumpectomy made no difference to the outcome or treatment, so it was suggested I go for lumpectomy... lesser surgery in preparation for the treatment ahead.

This time.... I'm seriously tired of the mammograms and MRIs; tired of the stress once or twice a year; and honestly, having two biopsies in a week just did me in. Don't even get me started on my husband and kids... getting that deer-in-the-headlights look again. The 'girls' gotta go but I'm worried I'll be told I'm over reacting.

Don't get me wrong! I know it's early and DCIS but still.... Just looking for other stories and/or opinions....

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  • Peregrinelady
    Peregrinelady Member Posts: 1,019
    edited November 2020
    I am not in a similar situation, but I would think with your previous diagnosis that there would be no problem getting a mastectomy this time. Best wishes.
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  • MinusTwo
    MinusTwo Member Posts: 16,634
    edited November 2020

    I was diagnosed with DCIS in 2011 and opted immediately for a BMX. No problems with the doc or the system.

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  • LivinLife
    LivinLife Member Posts: 1,332
    edited November 2020

    I have not had a recurrence - just had surgery for my first diagnosis. Initially I was diagnosed with DCIS Grade 3 with comedo necrosis. The surgeon expected invasion though none was present upon final pathology. The initial 5 cm area also only ended up with a smaller area of DCIS than thought with other benign and pre-cancerous conditions. Grade 3 with expansive comedo necrosis held.

    That being said I was not a candidate for lumpectomy b/c I could not have radiation due to scleroderma. I had larger breasts, am 58 so gravity was unkind, etc. so I opted for a BMX right off the bat b/c I already was told I had to have a UMX (though already had my mind made up about BMX). I realize the recurrence rate is not different though also knew I could not continue going through all the diagnostics over time (already had many call backs and two stereotactic biopsies on my other breast the last several years), as well as additional surgeries that many seem to have to undergo b/c of margins, recurrence, etc. Long and short is I have not had any regrets!!! I wish you well in your decision!!!

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  • SuQu31
    SuQu31 Member Posts: 160
    edited November 2020


    I had high grade DCIS (comedo necrosis) and was ER-/PR-. Mastectomy was recommended by two surgeons. The hormone receptor negative and high grade/comedo necrosis seemed to be the reason for the recommendation, because there would not be as many options if it recurred. I chose double mastectomy and do not regret that decision at all.

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  • suzopedia
    suzopedia Member Posts: 49
    edited November 2020

    It got me again after 15 years. Dx was DCIS. Previous was IDC. This time I had 2 lumpectomies and the second one showed microinvasion and lots of ADH and I decided I had enough. Even tho surgeon was not recommending more surgery, no one balked. I was done and they all said ok.

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  • Tmh0921
    Tmh0921 Member Posts: 714
    edited November 2020

    I was Dx with IDC stage I in 1999 (at 27), had a lumpectomy, radiation, and Tamoxifen

    Between then and 2016, never had a normal mammogram, and had biopsies almost yearly

    In 2016, I was Dx with ADH

    In 2018, I was Dx with ALH and DCIS

    In 2019, I was Dx with stage 2A IDC and opted for a bilateral mastectomy

    After 20 years of abnormal mammograms and biopsies and anxiety, I was done. If I had known in 1999 what a long stressful road it would be I would have opted for bilateral mastectomy then


    *Edited to add, after my 2018 DCIS diagnosis I had spoken to my surgeon and insurance company about mastectomy and reconstruction and both were ok with it. Unfortunately, I went with one more lumpectomy 😞. If I'd followed my instincts maybe I could have avoided a stage 2A Dx less than a year later.

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  • marjie
    marjie Member Posts: 1,134
    edited November 2020

    Thanks everyone! I finally have my surgical consult tomorrow. I want BMX and will be open to suggestions on reconstruction, but I'm standing my ground to have these effing things gone!

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