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!
8/19/2019, DCIS, Right, 3cm, Stage 0, Grade 3, 1/2 nodes, ER+/PR+
9/15/2019 Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
10/9/2019 Reconstruction (left): Silicone implant
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