Maha,

So sorry you are going through this.

Unfortunately, it does happen. About 1%-2% of women who have a MX for DCIS do end up with a local recurrence. That's a small percentage, but when you consider that about 65,000 women in North America are diagnosed with DCIS every year, about a 1/3 of them have a MX, that works out to a lot of women.

I believe that if your new diagnosis is pure Stage 0 DCIS and not invasive cancer, then the surgery may be all the treatment necessary, although perhaps radiation and/or hormone therapy will be recommended. Not sure about that and I agree with MinusTwo that it would be advisable to speak to a Medical Oncologist.

Here are some other threads where this has been discussed:

Topic: Has anyone had Reoccurance of DCIS after a Mastectomy

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Topic: recurrence after DCIS mastectomy

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Topic: Recurrence after bilat mastectomy? This third thread isn't specific to DCIS but a lot of women who had DCIS initially and had a BMX have posted here.

Hi Maha202- How was the additional DCIS found? Do they think it was missed the first time around? Please do keep us updated. Thinking of you and I'm so sorry you're dealing with this again.

Hugs

just curious, how do you get DCIS again when there are no longer any ducts left?

I have felt a lump recently 3/4" below my scar and am paranoid it is recurrence just after 2 years since my mastectomy. I see the doctor later this week. I did read women who have 6cm+ greater are more likely to have a recurrence.

But that stinks, that breast cancer risk calculator informed me there's a 1% chance of getting cancer at age 35 (I did), now if it's a 1-2% chance of DCIS local recurrence then wow what odds. I have also had swollen nodes since my surgery and am paranoid it is spread.. double mastectomy for DCIS is not "supposed" to lead to cancer again this soon wtf. Just makes me feel like surgeons are incompetent. Maybe I should have had radiation with the mastectomy, though I know that is not as common and I wanted mastectomy to avoid radiation. This feels so punishing and like being shit on.

Curious what the course of action is if a lump near mastectomy scar turns out to be cancer again. Because of mastectomy they can't do a sentinel node biopsy, I am also scared of having to have more nodes taken. Stinks having to wait for information and appointments..... up late new years eve on this forum, depressing

"just curious, how do you get DCIS again when there are no longer any ducts left?"

Ah, there can still be ductal tissue left against the skin or the chest wall, even after a MX. And this is how a few cells of DCIS could remain to cause a recurrence, and how those few cells, if not caught soon enough, can turn into an invasive recurrence.

Think of your breast as being like a bowl, and inside is spaghetti - well actually, bucatini, which is hollow spaghetti - and sauce. The bucatini are the milk ducts and the sauce is the breast tissue. Anything that is in the middle of the hollow bucatini isn't going to be 'escaping' into the sauce or slopping outside of the the bowl (as the sauce might do) but the bucatini is a tangled mess that fills the whole bowl and goes right up against the sides and bottom of the bowl, and sometimes even sticks to the sides of the bowl - just like the milk ducts in a breast against the chest wall and the skin. A bit of a strange example a fairly accurate representation.