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Lilyluv
Lilyluv Member Posts: 160
edited June 2014 in DCIS (Ductal Carcinoma In Situ)

Hi all, I've just been lurking and reading everybody's experiences.  I just had a lumpectomy last month for high grade DCIS with necrosis and completed my first radiation simulation this past week.  Dry run is this Friday and then the following week starts 4 weeks of rads with a boost.  I can't take any of the drugs, so hopefully it'll be hasta la vista DCIS after that.   Only complication of surgery was a terrible rash that was suspected out to be an allergy to that glue they put over the incision. It was like having ant bites all over my breast - terrible itching and the rash kept spreading.  After 6 days of prednisone it's almost gone now.  Funny thing is I didn't realize  how swollen I was from it until a few days ago when I noticed that my boob is deflating.  The surgeon said she took out a golfball size to ensure clean margins.  She couldn't get enough margin by the chest wall but apparently DCIS can't jump over into the chest wall.   

One question I have is this. The oncologist said something at the end of the meeting to go over the pathology report that I don't understand.  He said in 3 or 4 months it was likely that it would have turned invasive.  I thought they can't tell if DCIS will ever become invasive or not? 

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  • Chinoiserie
    Chinoiserie Member Posts: 4
    edited January 2014

    I think there may be a question with lower grades of dcis but a high grade with necrosis is more aggressive and more apt to become invasive.  I would think that is what he meant.   I remember always having a problem first learning about this when they said 'non invasive' dcis ....well, it seems to be non invasive until it becomes invasive, to me that is misleading to be given a 'non invasive' status!    good luck with your rads!

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

    Yes, high grade DCIS is almost certain to become invasive, and within a shorter period of time than low grade DCIS (which can take as long as 20 or 30 years to become invasive, if it ever does).  But 3 to 4 months?  There is no way that your oncologist could know this.  From what I've read, generally they say that high grade DCIS is likely to become invasive within 3 to 5 years.  But with each individual case, it's impossible to know.

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  • njmae
    njmae Member Posts: 48
    edited January 2014

    it seems to me the problem is that we have no way have knowing where we are within the time frame from DCIS to invasive.  The oncologist can't know either.

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  • Lilyluv
    Lilyluv Member Posts: 160
    edited January 2014

    Thanks for the clarification.  That's what I thought.  He may have just been saying that as an off the cuff remark meaning it's good I finally went for the mammogram that I wasn't going to get.

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