Close margin after MX for DCIS. What to do?

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Emily12
Emily12 Member Posts: 40
edited June 2020 in DCIS (Ductal Carcinoma In Situ)

I was diagnosed with DCIS in April of 2020. I had lumpectomy which didn’t achieve clear margins in 6 of the 7 slides, so I had to have a mastectomy due to the size of the DCIS relative to the size of my breast.
I opted to have DMX and avoid taking tamoxifen for the other breast.

After the surgery I found out that there was another small area in the same breast that had DCIS which was not seen on any of the imaging. In that area the margin that was achieved was only 1mm and that it was close to the chest wall.

My breast surgeon insists that I do not have to have any additional treatment because my DCIS was grade I/ size 2.1mmand he says that 1mm clear margin is enough. I had 2 SLN removed that came clean. My DCIS is over 90% ER/PR positive. I am 47 year old.

I am wondering if anyone has had a different recommendation. I read some horror stories about reoccurrence and cancer coming back as invasive especially for women who were under 50, and specifically when the close margins were to the chest wall.

Am I spinning out here? I would appreciate any feedback.

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  • MinusTwo
    MinusTwo Member Posts: 16,634
    edited June 2020

    I had DCIS BMX with clear margins - everything clean - so no other treatment. Two years later I found a lump by my collar bone that turned out to be IDC. Obviously everyone was surprised and I did chemo/surgery/chemo/rads & herceptin for a year.

    I know that DCIS isn't supposed to require any other treatment, but I think I'd meet with an oncologist or two and get a second opinion. A surgeon is a surgeon. In my case I had an MO driving the bus all along and he was as horrified as my surgeon. But it's worth at least one more opinion.

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  • Cowgirl13
    Cowgirl13 Member Posts: 1,936
    edited June 2020

    As MinusTwo said, defiinitely meet with an oncologist. Personally I would not let my surgeon make all the decisions. Surgeons cut. The oncologist has the entire picture.

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  • Emily12
    Emily12 Member Posts: 40
    edited June 2020

    Thank you Cowgirl13. I will definitely see MO and RO. I am waiting for my slides to get back from John Hopkins where they were sent for a second opinion ( hospital policy)

    MinusTwo, your story was one of the few that made me concerned with reoccurrence. Do you know what treatment options are out there for someone like me. I read that the American breast cancer oncology association ( not sure about the exact name) doesn’t recommends local radiation for patients with DCIS treated with mastectomy?

    I want to be able to go in and be prepared with questions for specific treatments.

    Thank you

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  • Beesie
    Beesie Member Posts: 12,240
    edited June 2020

    Emily, your options, if you want additional treatment, are radiation or endocrine therapy (Tamoxifen or an AI).

    There are numerous old threads where this is discussed, and there are a number of others in your position who have opted for either rads or Tamox, as well as some who have chosen to not have any more treatment. My system is too slow tonight to do a search to find these threads, but I will see if I can find them tomorrow.

    Edited to add: Found one. Topic: No clear margins after mastectomy? https://community.breastcancer.org/forum/68/topics/872582?page=1#post_5429843 My post in this thread includes links to many other threads on the same topic.

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  • SandiBeach57
    SandiBeach57 Member Posts: 1,617
    edited June 2020

    Hello. I had DCIS in 2006 (age 49) with close margins to chest wall. I thought my mastectomy would be enough.

    What I remember is that sometimes those of us with DCIS are not scheduled to see a MO, RO..just the surgeon.

    On my bx report, the pathologist recommended evaluation with RO for radiation to chest wall. I consulted with RO..agreed with path report re radiation.

    What? After mastectomy?? Plus I was recovering from breast reconstruction and had expanders. With radiation, the newly placed expander would have to be removed..

    So I sought 2nd,3rd, 4th MO opinions. All said no radiation., mastectomy was enough. They did recommend tamoxifen and I didn't like SEs, so stopped. I declined radiation.

    I was an idiot. I should have listened to the RO, plus kept with tamox. My MO and RO recommended a mammogram on expanded skin one year later. Guess what? DCiS. My MO suspected that is when it spread undetected, but no proof to start chemo.

    The beautiful new saline inplant was removed..radiation to chest wall and 5 years tamoxifin.

    And now 10 years later, mets to liver. My MO's suspicion in 2007 was right.

    I am not saying this to scare you, just to advise you to do everything to prevent DCIS from becoming IDC.

    DCIS is no joke..please don't let anyone downplay it and they will. It is stage 0 afterall. Close margins are a big deal. Keep your annual appts with your MO forever. If your tumor markers were a good indicator of your breast cancer, check them every year.


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  • MinusTwo
    MinusTwo Member Posts: 16,634
    edited June 2020

    Emily - My DCIS was ER/PR negative. So although it wasn't an option for me, sounds like you should definitely consider hormone treatment.

    But to me radiation doesn't make sense IF all your docs agree there were generous clear/clean margins. That's why I mentioned a medical oncologist. Any thing unseen that escaped the surgery would be "mopped up" with a systemic treatment. But if it's unseen & gone, how would they map for radiation? (edited to say, this is a personal decision not a treatment recommendation)

    I had radiation after my recurrence. At that time my implants had been in place for 3 years. Other than one implant is higher & tighter, I had no problems. Also I believe that many docs recommend radiation with expanders in place since it might be harder to stretch the skin after rads.

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  • Togethertolearn
    Togethertolearn Member Posts: 278
    edited June 2020

    I didn't have that type of cancer nor a mastectomy, but did have close margins after tumor removal. The tumor board, whatever that is, hada 50/50 vote on if I should get bigger margins. I chose to as a 45 year old with low oncotype and very small tumor . It's just another surgery you'll be asleep for, so why not? That was my thinking: what could it hurt? That was my process If it helps.

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  • Beesie
    Beesie Member Posts: 12,240
    edited June 2020

    Togethertolearn, I agree with your logic when it comes to a lumpectomy. Unfortunately the same approach usually can't be applied to those who've had a mastectomy, since all the breast tissue has been removed so there is nothing further (except chest muscle) that can be removed surgically to achieve wider margins.

    MinusTwo, the issue after a MX for DCIS is that there isn't agreement as to what is an acceptable margin. Emily indicated that her chest wall margin was 1mm. By some definitions that is an acceptable margin, by other definitions it is not. Certainly no one would say that 1mm is a generous margin. To complicate matters, age and grade may come into play as well.

    The following study, the first I recall reading years ago about DCIS margins after a MX, suggests a significantly higher recurrence rate for those with margins of less than or equal to 2mm, but within this study, the higher risk seems to only apply to those who were under age 60 and had grade 3 DCIS. That said, I don't know the age and grade distribution within the study, which only included 80 patients.

    "With a median follow-up of 61 months, 6 (7.5%) of the 80 patients developed local recurrence. Of the 31 patients with a margin of less than or equal to 2 mm, 5 (16%) developed local recurrence vs. only 1 (2%) of 49 patients with a margin of 2.1–10 mm (p = 0.0356). Of the 6 patients with local recurrence, 5 had high-grade disease and/or comedonecrosis. All six recurrences were noted in patients <60 years old."

    .

    This more recent, much larger study found some small differences but nothing statistically significant and therefore came to a different conclusion:


    Some key points from the study findings: "After mean follow-up of 10.2 years, 36 patients (2.4%) developed chest wall recurrence (17 were DCIS, 19 were invasive cancer)....

    ...We examined the features of women who developed chest wall recurrence in an effort to identify factors associated with an increased risk of chest wall recurrence following mastectomy for pure DCIS. Individuals who developed chest wall recurrence were more likely to be younger than 45 years at diagnosis (19.4 vs. 16.2%; p = 0.20), have high nuclear grade DCIS (36.1 vs. 27.8%; p = 0.41), or close resection margins (52.8 vs. 43.6%; p = 0.23) but these differences did not achieve statistical significance....

    ...On univariate (and multivariable) analysis, none of the factors including resection margin width (univariate HR: ≤2 mm = 2.1 (95% CI 0.86–5.1), p = 0.10), age at diagnosis (age < 45 years, HR = 1.29 (95% CI 0.55–3.02); p = 0.72), high nuclear grade (univariate HR = 3.0 (95% CI 0.4–23.1), p = 0.29), subtype, presence of multifocality (univariate HR = 0.7 (95% CI 0.28–1.62), p = 0.36), presence of comedo necrosis (univariate HR = 1.7 (95% CI 0.23–13.1), p = 0.60) or breast surgeon volume (univariate HR for low volume = 2.6 (95% CI 0.89–7.37), p = 0.08) were associated with an increased risk of chest wall recurrence....

    ...Among 130 women <45 years at diagnosis with close (≤2 mm) margins, the 10 year rate of chest wall recurrence was <5%....

    ....Chest wall radiotherapy is associated with a risk of acute and late toxicity, including a detrimental effect on cosmesis following breast reconstruction. Therefore, we aimed to identify baseline factors associated with the development of isolated chest wall recurrence in women with pure DCIS treated by mastectomy, in an effort to identify the subset of individuals who might benefit from post-mastectomy adjuvant radiotherapy. We did not identify any feature, alone or in combination, that was associated with a significant increased risk of chest wall recurrence (at 10 years of follow-up) such that routine radiotherapy should be recommended."


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  • MinusTwo
    MinusTwo Member Posts: 16,634
    edited June 2020

    Thanks Beesie. I do know my experience is falling further & further away in time from current research. I still think it's important for Emily to meet with an MO and discuss systemic treatment.

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  • Beesie
    Beesie Member Posts: 12,240
    edited June 2020

    Minus, I agree. Emily definitely should get an MO's advice on this - and maybe a couple of opinions, since this is such a gray area. This is not up to the surgeon.

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  • Emily12
    Emily12 Member Posts: 40
    edited June 2020

    Thank you MinusTwo. I will definitely look for a first and second opinion of MO and RO. I am based out of Chicago so I will go to two of the big university centers.

    Beesie, thank you for the studies. I have seen similar articles, maybe the same and this is what is the most confusing part. There are no clear guidelines of what is an acceptable margins for DCIS treated with DMX and when to do Rads vs Tamoxifen. I am sure that like in the case of SandiBeach57 different MO and RO might have different treatments/ or no treatments at all for my case and I will have to make the decision on my own. It is a very confusing situation. I read one of the older topics on the subject where another member had their pectoral facia removed as an additional layer of protection and decided to save the Rads as an opinion in case of a reoccurrence. I wonder if that is a option in my case

    Can someone please explain what “tumor markers” reference mean in SandiBeach57 comment? Sorry I am still new to the lingo

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