Outcome for untreated pure DCIS - high grade

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AMLMom
AMLMom Member Posts: 102
edited December 2018 in Diagnosed and Waiting for Test Results

Hi everyone, I'm just considering my treatment options for what at this point is pure DCIS - grade 3 with necrosis (waiting for additional tests to confirm no IDC). Based on everything I am reading, there seems to be a common view that DCIS is overtreated. I have read a few posts of people choosing lumpectomy only. I am wondering whether anyone here has decided against treatment for DCIS and what the longer term outcome was. Any regrets one way or the other?

Apologies if this is a silly question. There is so much conflicting information so I am trying to have an open mind and properly weigh all my options. Thank you in advance.

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  • cathiero
    cathiero Member Posts: 17
    edited November 2018

    Hi, AMLMom. Even though I didn't decide against treatment I'd like to offer my two cents worth. Ten years ago I was diagnosed with high grade DCIS with comedo necrosis. It was treated with lumpectomy, radiation and five years on an aromatase inhibitor (Femara). At the end of that five years I was diagnosed with a stage 1 intermediate grade triple neg cancer in the same breast. My advise to you is to have the DCIS treated. That obviously doesn't guarantee that there will be no future diagnoses, but at least you will have done what you can to avoid it. Good luck. 

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  • Jelson
    Jelson Member Posts: 1,535
    edited November 2018

    There is a common view that DCIS is over-treated, but when you actually read articles/studies they are discussing low grade DCIS, not grade 3 with necrosis. I have followed this debate for years now, worried that I over treated ( lumpectomy/radiation/tamoxifen) but have never found anyone recommending watching/waiting on grade 3. I almost feel lucky that I don't have to second- guess my choices. I hope no IDC is found.

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  • AMLMom
    AMLMom Member Posts: 102
    edited December 2018

    Thank you everyone for your comments. I really appreciate that you took the time to respond. I feel much more informed. I plan on doing full treatment.

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  • Jtjjc5
    Jtjjc5 Member Posts: 21
    edited December 2018

    I was just diagnosed with DCIS, non-invasive, and was given the option to wait and watch, I decided to go with the lumpectomy, 5 weeks of radiation, and no hormonal therapy as I had a full hysterectomy 3 years ago. My sister was diagnosed DCIS, invasive and went with the same treatment with hormonal treatment, she is glad she did and she's fine today.

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  • AliceBastable
    AliceBastable Member Posts: 3,461
    edited December 2018

    Hi jtjjc5, just to let you know, I had a full hysterectomy 10 years ago, never took a hormone replacement, and developed breast cancer this year, very high ER/PR positive. Neither of us would have gotten breast cancer if a hysterectomy shut down all the estrogen production. Please discuss the hormone blockers thoroughly with your MO before you make a final decision.

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  • AMLMom
    AMLMom Member Posts: 102
    edited December 2018

    I’m feeling very frustrated. It has been over 3 weeks and I’m still waiting for the staining test to determine invasion/microinvasion. I have followed up with everyone and no-one gets back to me. I’m wondering if someone forgot to order the test. My doctor was expecting them over a week ago. I’m trying to be positive but its hard when I don’t know what im dealing with. Sorry to complain

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  • eggroll
    eggroll Member Posts: 150
    edited December 2018

    Every pound of fat is a mini-estrogen factory. So if you can stand the blockers (I can't) take them...and if you need to lose weight and can lose weight, do! I've been working out like crazy but haven't lost weight, getting more muscle though, I think it's heading in the right direction.

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  • MDRR
    MDRR Member Posts: 133
    edited December 2018

    Hi

    My diagnosis was DCIS initially and I had a lumpectomy roughly 6 weeks after initial testing. However the pathology on what had been DCIS determined that it had become invasive, moving to stage 1 by the time I had surgery. So I ended up having a mastectomy. Had it been lower grade DCIS I may have opted for watch and monitor, and may not have caught that it was on the move already. You don't want to overtreat, but also don't want to miss anything.

    Best of luck with your treatment!

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  • Meow13
    Meow13 Member Posts: 4,859
    edited December 2018

    I think you run the risk of not seeing any invasive part until it gets larger. My SIL had DCIS, she chose bmx and they found 1mm IDC and more DCIS in the other breast that didn't show on scans. Now she was given tamoxifen and hates the side effects. She asked me what I thought, I told her to press her doctor on how helpful it was for prevention. I think she is going to ditch the pills. Her risk of local recurrence is low from bmx and also she had no cancer in the nodes or elsewhere.

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