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tnotman420 Member Posts: 3

Hello, I was recently diagnosed with DCIS. I had my lumpectomy on 10/31/2022. My labs resulted in margins that were not clear. The lateral was on the rim and the other 2 slides (superior/inferior) were 1.5 CM with DCIS. Radiation oncologist wants me to have re-incision but surgeon is not sure that is the answer. The DCIS can be microscopic to the eye and can make re-incision difficult. What are everyones thoughts on re-incision?

Edited by Mods to fix a typo.


  • exbrnxgrl
    exbrnxgrl Member Posts: 5,042


    It is my understanding that re-excision (excise as in removal of tissue) when clean margins are not achieved at initial surgery, is somewhat common. No cancer cells, DCIS or any other type, are visible to the eye. They are all microscopic so visualizing cancer cells is not an issue as cancer cells simply can’t be seen. On a re-excision, the surgeon will remove more of the suspect area (I do not know how they determine this) and then the pathologist, through examination under a microscope, will determine if enough tissue has been removed to achieve clean margins. Take care

  • alicebastable
    alicebastable Member Posts: 1,946

    Mine wasn't DCIS, but I did have a reexcision. I was home before noon and didn't feel anything afterwards. I think they used the lightweight anesthesia so no aftereffects from that, either. I did wear my snug sports bra with a rolled-up child's sock against the incision (my go-to after any surgery) for a few more weeks, though, to avoid any swelling.

  • moderators
    moderators Posts: 8,290

    Hi tnotman420, and welcome again.

    Some good insight from our members above, but we wanted to also share this page with you from our content on Re-excision Lumpectomy.

    Also, a reminder to advocate for yourself if you feel the care you're getting isn't sufficient. Have you considered a second opinion?

    Please let us know if you've made any progress with getting the care you deserve, and keep us posted with how you're doing.

    --The Mods

  • wondering44
    wondering44 Member Posts: 261

    Based on my reading of your post, I might ask questions I did not know to ask when I first started.

    Pathology: Is the DCIS grade 1, 2, or 3? Was it described as cribriform, micropapillary, apocrine, comedo, with comedonecrosis, papillary, or solid? How do your results factor in a possible recurrence?

    If DCIS was hormone positive, are you planning to use an AI or Tamoxifen? How does that affect the recurrence risk for radiation without re-excision?

    How many margins were positive?

    Which margin was positive (superior, deep, inferior)? How does the number of positive margins factor in a possible recurrence?

    Is radiation without re-excision enough for one, two, or three involved margins? What are the NCCN Clinical Practice Guidelines for DCIS-involved margins?

    What determined the RO recommending a re-excision?

    What determined the surgeon not providing you with informed options to make a decision? Why the "I'm not sure that is the answer?"

    Are you comfortable with positive margins and radiation alone? Can you squash the wondering that DCIS was left behind?

    Are you comfortable with additional breast tissue removal that may increase the different look of the breast? Is the look of your breast more important than clean margins?

    Your Team should review it and give you informed options. An "I'm not sure that is the answer" from the breast surgeon is not an acceptable answer. You must not receive an expectation from your doctors for you to make decisions without accurate and knowledgeable medical advice. You get to go back and ask as many questions as you want until you clearly understand it all. It is your body and your DCIS. You should have zero regrets or stress about your medical decisions based on a doctor's answers without an explanation to those answers. Learning to advocate for yourself is a must when an answer of "I'm not sure" is given or a physician's recommendation was provided to you and you did not get a total or clear understanding of it.

    I hope you find the answers you are looking for for the margins. I send hugs your way while you work to figure it out.

  • tnotman420
    tnotman420 Member Posts: 3

    Thank you for your reply.

  • tnotman420
    tnotman420 Member Posts: 3

    Wondering44, excellent questions. I am still learning to read and understand lab results. My mother died of breast cancer at the age of 52 when I was 21 yrs old. I don't think I have a strong attachment to my breast as I do life. I am worried that if I opt for a mastectomy that the surgeon will say not medically necessary and will not be covered under insurance. I think I am more worried about not having a second surgery and the "what if ". Not having my physicians on the same page is frustrating. I am getting a second opinion. Here are notes from my labs. I think my surgeon feels the margins under the 2 mm (1.5) is treatable with radiation and additional surgeries open additional risks. Thank you for your response and questions.

    Ductal carcinoma in situ (DCIS), solid and cribriform architecture NG1-NG2, multiple foci, with focal central calcification and slight necrosis.

    DCIS is focally present at inked lateral margin of excision and is focally within 1.5 mm of inked inferior margin and focally within 1.5 mm of inked superior margin.

    Reactive/reparative changes consistent with prior core biopsy.

    Size (extent) of DCIS: The DCIS does not form a discrete mass; DCIS is identified in 19 of 25 examined and the largest area measures 1.2 cm

    Nuclear Grade: Grade II (intermediate)

    Necrosis: Present, focal (small foci or single cell necrosis)

    Margin(s) Involved by DCIS

    Lateral - DCIS is focally present at inked margin

    DCIS is focally within 1.5 mm of inferior margin and is focally within 1.5 mm of inked superior margin

    Estrogen Receptor (ER) Status: Positive (greater than 10% of cells demonstrate nuclear positivity)

    Percentage of Cells with Nuclear Positivity: 94.52 %

  • wondering44
    wondering44 Member Posts: 261


    I am sorry to read about your mom. That must make this much more difficult for you.

    I wasn't given an option to re-excise until after radiation. It is much better to do it before radiation. Many more risks to breast tissue damage with a re-excision after radiation. When I found out my margins were positive and not negative like my original pathology showed I discussed with my doctors and got three different answers. Frustrating was an understatement. All of my margins were positive like yours. I didn't have any family history of BC.

    MO said radiation was enough

    BS said all the tissue was removed so no need to re-excise.

    PS said redo the mastectomy.

    I wasn't sure what to do but was terrified that later on I was at a higher risk for recurrence. I changed Teams after a second opinion on the positive margins. What I found was a Team that didn't give me different answers. They worked together to develop a plan. It was recommended that I re-excise/redo the mastectomy due to the positive margins, leftover residual breast tissue, and cancer at the nipple that was left during the first mastectomy. The cancer at the nipple was diagnosed by my second Team. It should have been diagnosed originally.There were risks to losing the entire breast because I had already completed radiation. I was well informed about the whys and risks before I made any decisions. Being well informed by my Team alleviated so much stress that I had when I was trying to figure it out with all the different answers from my original Team. I redid the mastectomy and opted to do a BMX to have my breasts look more similar. I also didn't want to run the risk of having additional concerns come up on my non-cancer breast and have to return to my original facility/Team if I wasn't able to travel out of state later on. To me, it was terrifying to consider to go back for more care at my local facilities if my health insurance changed. My second opinion took a while to get in. I almost didn't go due to the wait. The wait was worth it.

    With the positive margins I don't think your insurance should deny a mastectomy if that is your preferred route especially with your family history. My insurance covered everything again 100%.

    I am glad to see you are getting a second opinion. If you get the same recommendation and want a mastectomy go ahead and push for it. I'm pretty sure you get to make the choice regardless of what the surgeon recommended. It is your health and mindset that you have to manage. Women get mastectomies with family history and no DCIS.

    Wishing you a lot of luck on your second opinion and health. Please post your news. It helps other women who need to make decisions to read similar stories.