DCIS 0 high grade and opting for Bilateral mastectomy

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Shakes561
Shakes561 Member Posts: 7
edited November 2017 in Just Diagnosed

Am I crazy? After 8 years of suspicious calcs, multiple views and 2 biopsies,,, I have a winner. Have decided to go forth with removing them. Surgeon and Rad-Onc are pressing me to go lumpectomy. Anyone here regret the path in hindsight I”m about to take? I realize we’re all different, but would love some perspectives from those with experience.

Thanks!

Sue

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  • SoCalBC
    SoCalBC Member Posts: 9
    edited November 2017

    I had high-grade DCIS and opted for lumpectomy ... only for them to find invasive cancer during the surgery, so I ended up with a double mastectomy anyway.

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  • Sitti
    Sitti Member Posts: 230
    edited November 2017

    Shakes561,

    First off, let me say I'm sorry for the reason you have to be here but I'm glad you found us as there's great support and encouragement. I don't know what your hormone receptor & size of area are but these can also have a bearing on your level of comfort with LX or MX. You're not alone, and not crazy in your thinking but you are the only one that can make this decision. There are some great threads on the topic too. At least 2 or 3 that I am aware of, I'll try to find them and post the links.

    For me, I was also encouraged to do lumpectomy. I also had years of call backs, watch and waits, a biopsy, etc. I dreaded going for my mammogram, at times avoiding for several years at a time (I know it makes no sense but fear never is rational). I was told my survival rate would be the same, if I had recurrence, then they would do MX since you can't have rads again. I did go ahead with LX (lumpectomy). When pathology came back the size was 4.4 cm instead of the 2.5 cm originally thought. The fact that the size was so far off didn't help me feel comfortable. I was going to need to have a reexcision and it seemed like a large amount of my breast was already removed (small breasted). I decided on BMX, for multiple reasons, one big one being I didn't want to do rads. Interestingly, only after BMX, pathology also found LCIS and ALH. Though not cancer, those would have gone undetected. My nurse navigator said I definitely made the right decision. All that said, it is still a hard decision, and you have to weigh out the risk (and loss) involved with each procedure. Either way there are risk, and I think only you can decide which risk you are willing to take and and which is right for you. I know others will be along to encourage you. Wishing you the best. Keep us posted.

    Edited to add: https://community.breastcancer.org/forum/68/topics/806074?page=8#idx_235


    https://community.breastcancer.org/forum/91/topics/852005?page=4#idx_116

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  • MommaS
    MommaS Member Posts: 5
    edited November 2017

    I'm new here too. I have very early stage 1 slow growing cancer but I'm doing double mastectomy. There's never any guarantee but I feel better about this decision. I was talking to the plastic surgeon and he was telling me about these women that have lumpectomies and then come back 15 years later for another cancer. Every one must feel good about their own individual choice. We all have different cancers and are different people.

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  • Lula73
    Lula73 Member Posts: 1,824
    edited November 2017

    to avoid the constant testing, waiting and nail biting every 6 months is worth it alone in my book..

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  • Shakes561
    Shakes561 Member Posts: 7
    edited November 2017

    Thankyou all

    Sitti - it’s a DCIS 0 Highgrade/Nuclear grade ER+/PR+. I appreciate your links, very helpful to read through. I feel better already so many have chosen the course I’m taking, especially when I see many of you had found more than expected. Surgery is scheduled for Dec 13.

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  • Leatherette
    Leatherette Member Posts: 448
    edited November 2017

    Started out with high grade DCIS, 6+centimeters, was going to have a mastectomy on that side due to the size of the tumor, then they found Invasive Ductal Carcinoma as well. So I had a left side mastectomy, but do wonder if I should have had both removed. If you feel ready to do this, it is insurance that lowers the likelihood of recurrence.

    Best,

    Leatherette



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  • Mucki1991
    Mucki1991 Member Posts: 294
    edited November 2017

    please make sure you are aware of the life long impact a mastectomy can have. There are a lot of possible side effects. If I could have had a lumpectomy I would have. I now have issues that are permanent and impact my daily life. I'm so sorry for you situation just make sure you are well informed as you make your decision. Best wishes for you.

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  • Lula73
    Lula73 Member Posts: 1,824
    edited November 2017

    shakes-are you planning to do recon?

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  • Shakes561
    Shakes561 Member Posts: 7
    edited November 2017

    Yes Lula73, I am. Have planned the recon and will have it done in 1 step. I’m bigger on top and will be left with a smaller profile. Should work better for my athletics, but will completely change

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  • Rrobin0200
    Rrobin0200 Member Posts: 433
    edited November 2017

    BMX here after DCIS dx. ZERO regret. Reconstruction same day and couldn't be happier. That's just me though

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