DCIS + Mastectomy + Radiation?!?!?!

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wackycat123
wackycat123 Member Posts: 2
edited November 2019 in DCIS (Ductal Carcinoma In Situ)

Hello Ladies,

Has anyone diagnosed with pure DCIS had a mastectomy AND radiation treatment?

I am 46 years old and was diagnosed with high grade DCIS in August 2019 that was slightly ER positive (10%). Due to the size of the area (3.5 cm) relative to the size of my breast and a family history of breast cancer, I had a double mastectomy with sentinel node biopsy and immediate reconstruction (one implant didn't make it due to infection, but that's a story for another time). I was told after my mastectomy, I wouldn't need further treatment.

Then, my pathology report came back with a few red flags, so much so that the report started with an ominous introductory sentence - "this was a complicated case". I had positive margins both at the chest wall as well as close to the skin. Additionally, there were isolated tumor cells in one of the two lymph nodes they pulled (<200). But, for those of you familiar with the technical terminology, this is still considered "node negative". The pathologist said they could not find any sign of invasiveness - pure DCIS - and suggested that the tumor cells in the lymph node were due to "knife carry" (i.e. my original biopsy might have released cells into my breast).

At my surgical follow-up, my breast surgeon said she took "extra tissue" near the skin area because she saw the tumor was close to the skin. The pathology for that extra tissue was negative for carcinoma. So, she thinks that's a negative margin for all intents and purposes. Nonetheless, she sent me to the radiologist to see what they said, though she was fairly confident they wouldn't recommend it.

Needless to say, I was quite surprised when the radiologist said that he would lean towards doing radiation. He said even though each of the red flags on their own wouldn't warrant it, he thinks the combination would justify it. He also thinks the fairly large size and high grade characteristics provide further support.

I'm still shocked because I can't get my head around a DCIS, mastectomy patient needing radiation. I'm even wondering if my insurance will pay for it as I can't imagine it is within protocol.

He thinks I have a 15% recurrence rate risk, though he said this is his estimate as he doesn't think there is enough data on patients like me to provide a reasonable data-based estimate of the risk. He has been doing this for 30 years, so seems very experienced.

That being said, am I really that unique of a case? Has anyone else have radiation after a DCIS diagnosis and a mastectomy?

Thanks for your help!




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  • Beesie
    Beesie Member Posts: 12,240
    edited November 2019

    I'm sorry you are in this unusual and unexpected position. Unusual, yes, but it has happened to others here. Not sure how many are hanging here around these days, however. Not too many DCIS old-timers on the board

    I dug up an old discussion thread on this topic, and included in my post there are links to several other threads.

    https://community.breastcancer.org/forum/68/topics/872582?page=1#post_5429843

    Hope that helps!

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  • HopeWins
    HopeWins Member Posts: 181
    edited November 2019

    wackycat - I don't have personal experience with it, it but there is a predictive test specifically for DCIS patients considering radiation. It's called DCISionRT. I'm not sure if it would add value, but thought I'd share. So sorry you're dealing with this. It must be very disappointing after a bmx...

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  • Ingerp
    Ingerp Member Posts: 2,624
    edited November 2019

    I don't have anything to add other than, at least for me, rads wasn't that big a deal. If it provides any substantial reduction in recurrence probability I'd go for it. (And I'm sorry--I know this was a shock for you. It would be kind of awful to think you were finished with tx and then be told you have 4-6 more weeks--ugh.)

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  • Beesie
    Beesie Member Posts: 12,240
    edited November 2019

    HopeWins, I believe that both DCISionRT and the OncotypeDX DCIS are only for DCIS patients who've had a lumpectomy and who are then deciding on whether or not to add radiation. Unfortunately I don't think that either test can provide information about local recurrence risk after a MX.

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  • TB90
    TB90 Member Posts: 992
    edited November 2019

    Yup, it happened to me. And I have seen a few others on here that it has happened to. I had one positive margin post Mx. it was microscopic and my bs also felt there was an explanation for this, but all I heard was positive margin. I was devastated like you at the time. They had originally told me all clear and no further treatment. Then the second call. The bs acted like this was nothing. I sat there in shock. Then I started to research. Looked like I went from a 1-2% chance of recurrence to a 13% chance. I panicked, but looking back, that is still a 87% chance it wouldn’t. It was difficult to see it that way at the time. The bs was against radiation. All the studies at the time were basically 50% for and against. It came down to my decision based on my tolerance for risk. But there were risks either way. My RO completely supported my decision and agreed with my data. In fact, he complimented my research (all organized in a binder) as I had the same studies as his research assistant. He asked me how I did that and I replied, “Have you ever heard of Beesie?” The Beesie who replied above, was there to help me back in 2013. I have stayed on top of the research and not much has changed. The research is very reassuring that Mx even with a positive margin, remain a highly effective treatment, but radiation does cut recurrence rates by 50%. Death rates are similar with either treatment. Recurrence does not equal death. But I could not even consider dealing with a recurrence. Having more than one positive margin is a risk factor, as is high grade, so radiation in your situation is suggested. Looking back, I have recovered completely with no SE. I did not have reconstruction. So please let me know whether I can help further. I am surprised at the degree of treatment required for our situations too, but it is doable for me, provided the peace of mind I needed at the time. All the best

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  • wackycat123
    wackycat123 Member Posts: 2
    edited November 2019

    Thanks, all, for your input. I do feel a bit better knowing it's not as unusual as I previously thought. I wanted the BMX to avoid radiation, but maybe that's just not meant to be. That being said, I am going to go back the the institution that gave me the 2nd opinion on the tumor pathology as they were not recommending radiation.

    A lot of my annoyance also has to do with having had three surgeries already given the implant fail and needing two more (one to put in an expander and another to put in the implant). So, my original expectation of 4 weeks to recover from the BMX has now turned into months (BMX w/complications + radiation).

    Furthermore, my job is influx and my insurance will change Jan. 1. Just hard to stomach it all, though I do recognize how lucky I am to have caught this early and am quite grateful in that respect.


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  • Beesie
    Beesie Member Posts: 12,240
    edited November 2019

    TB90, thanks, you made my day!

    wackycat, yes, you are lucky to have found this early. But right now you are in middle of a lot of crap that is not going according to plan, and there seems to be a new issue at every turn. Early or not, you've had a lot to deal with. The time to be grateful for having caught this early will come later, once this is all done and it is well behind you in the rear-view mirror. Right now, you have every reason to be annoyed and frustrated. I would be too.

    Thinking about your situation, there may be one other option. Normally endocrine therapy (Tamoxifen or an Aromatase Inhibitor) is not recommended after a BMX for DCIS. Both recurrence risk and the risk of a new primary breast cancer is usually so low after a BMX for DCIS that the risk reduction benefit from these meds will be very small and will be outweighed by the risk of side effects. But if you have approximately a 15% risk of recurrence (which is consistent with the research I recall about close margins after a MX for DCIS), and because you are ER+/PR+, rather than rads, you could consider endocrine therapy. It's 5 years taking a drug that comes with the risk of side effects (some related to health but most related to quality of life), but many patients tolerate the meds well and have few if any side effects. The recurrence risk reduction would be about the same as you'd get from rads. Something to talk to your doctors about.

    Have you talked to a Medical Oncologist? An MO is the doctor who would discuss, recommend (or not) and prescribe endocrine therapy. Since the role of the Medical Oncologist is to coordinate the entire treatment plan, an MO should be able to help you assess the risk vs. benefit of doing no more treatment, going ahead with rads, or choosing to take endocrine therapy.

    Let us know how it goes with the 2nd opinion, and what you decide to do.

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  • MinusTwo
    MinusTwo Member Posts: 16,634
    edited November 2019

    Wacky - You don't list a HER2 diagnosis. I know they don't usually test for DCIS, but still.

    I had a BMX w/reconstruction - clear margins, clean sentinal nodes, etc. etc. Two years later I had what they called a "local recurrence" in a lymph node by my collar gone. It had gone from DCIS to IDC and HER2+. I really believe if they'd tested the HER2, I might have had chemo the first time around. I agree with Beesie - go have some searching discussions with a medical oncologist. That's who will drive the bus when you get on to maintenance treatment for your hormone positive issues.

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