DCIS +Micro-invasive + 2 Micrometases in SNB- Please help

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YJ2012
YJ2012 Member Posts: 21
edited December 2014 in DCIS (Ductal Carcinoma In Situ)

 I recently had a sentinel node biopsy during my Mastectomy
for large area of DCIS.

There were two types of tests done. (H&E), was
negative; (IHC) stain, was positive for 2 Micrometases deposit of 1mm and 2mm in one of 3 nodes they
removed during my mastectomy. All the other 2 nodes are clear.

After repeated pathology opinions with different centers,
they were able to trace invasive component within what they initially thought pure
DCIS of 2mm size. ER, PR and Her2 (still pending).

I am goggling my life away alternating between crying and feeling
hopeless as my surgeon thinks it must a be a very aggressive invasive component
( even though the size is only 2mm ) since it already spread to one of my
nodes.

Wondering if anyone else with a similar diagnosis?.
I am not able to trace anyone in my search and I hate being special esp with aggressiveness of the 2mm size
primary .. Now I am worrying about every
cough, sneeze and joint aches and barely able to get a good night rest with
constant worrying.

Thanks for your help.

YJ

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  • Beesie
    Beesie Member Posts: 12,240
    edited August 2014

    It's not so rare.  I had a 1mm microinvasion that was discovered during my excisional biopsy, and my oncologist warned me that there was approx. a 10% chance of finding micromets in my nodes just because of that tiny amount of invasive cancer.  Turns out my nodes were clear, but I've been around here a long time, and I know that there have been women through here who have had nodal involvement as a result of a microinvasion.

    I'm a research junkie and since my diagnosis is DCIS-Mi, I've done a lot of reading on it.  There are a number of studies that seem to suggest that the 10% figure is about right.

    As for worrying about every cough, etc., that's normal!  It took me about 8 to 9 months before that stopped.  I remember one day I had a headache, I took something for it and the headache went away.  A few hours later, it dawned on me that for the first time since my diagnosis, I hadn't immediately thought "brain mets!" when I got the headache.  That was a good day, because I knew that I was finally getting past that primal fear we all have after our diagnosis.  So give it time, and in the meantime, whernever you worry, remind yourself that you are normal and that there really is nothing to worry about.  I gave myself dozens of figurative 'slaps upside the head' over those months whenever the worry would strike!  It worked.

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  • YJ2012
    YJ2012 Member Posts: 21
    edited August 2014

    Thanks Beesie , for
    taking time to address my concerns.

    I am really concerned about the aggressive nature of a 2mm lesion
    ability to get to my lymph nodes. I must have had a really badone if something
    that small managed to travel to my lymph nodes. I am really worried where else in my body it travelled?

    To think , all started off with a simple diagnosis of DCIS , confirmed
    by ultrasounds , MRI’s, biopsies and Mamo
    showing Bi-rads : Negative!. Two surgical
    pathologists were reporting PURE DCIS initially; third center came back with Micro
    invasive with nodes involved. Not sure
    why one stain shows negative and the other one positive, I don’t understand
    enough about all these stains but it sure makes me all gloomy about my prognosis.

    I appreciate your
    efforts.

    Thanks Again.

    YJ

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  • Ariom
    Ariom Member Posts: 6,197
    edited September 2014

    So good to see you here Beesie!

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  • roby7
    roby7 Member Posts: 55
    edited December 2014

    hi

    Same here but my final pathology report said they couldn't find any invasive cells and I have one lymph node with micromestases and one with isolated tumor with 13 cm dcis grade 3 They said chemo will benifet me with just 1-2 % and because positive lymphnodes with DCIS is rare they don't have right or wrong here it is my choice plz advice

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  • Annette47
    Annette47 Member Posts: 957
    edited December 2014

    Roby7 - it sounds like you might have what they call an occult cancer, meaning they can find signs of spread but can't find the original cancer in the breast. it's rare, but it happens, and I know it's been discussed on the forums (not the DCIS one I don't think) before, so I would suggest doing a search for the term "occult" and see if you can find other people who have been in your position.

    Best of luck with whatever you decide.

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