Hurry up and wait?

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Lindab007
Lindab007 Member Posts: 17

This journey began over 2 months ago for me, and I am frustrated because there are still no clear cut answer and I have no idea what the next few weeks will hold. After 2 Mammograms, an ultrasound, Steriotactic Biopsy, and MRI, all I really know is that I have Nuclear Grade 3 DCIS with comedo necrosis.

My first mammo came back with definatve changes to many calcifications in my right Breast.Following a repeat mammo, I was told that they were going to do an ultrasound. The US showed at least 6 areas of concern and I was told to see a surgeon for a biopsy. Two areas were biopsies, one showing the DCIS, the other showing nothing, not even calcifications. After the path report came back, my doc requested a MRI to be sure all areas are addressed. That was done but I was too bruised from the biopsy and my doc did not like the radiologist's report so my case was presented to the TUmor Board and they want a repeats mammo ! Of course, then it will be the holidays and no surgery will be scheduled until the new year....

Is it safe to be waiting this long for everything? What are the chances of this turning into IDC in the meantime? Beacause now Genetic Testing has been ordered and that will take another two weeks! I am getting more nervous by the day

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  • ballet12
    ballet12 Member Posts: 981
    edited November 2014

    Hi Linda, I waited 7 weeks between the core biopsy and the first lumpectomy, as I had only been given a diagnosis of atypical ductal hyperplasia after the core biopsy, and I was not actually anticipating a DCIS diagnosis (although that's why they do the surgery in those cases). After they found the DCIS (and no clean margins), it took another 2 1/2 months before I had the re-excisions to achieve clean margins. Partly, that related to a move to a different surgeon and hospital, and partly it was due to the wait for the BRCA testing.  Here's the thing, it's very unlikely that DCIS will progress to IDC in a short period of time even grade 3 DCIS with comedonecrosis).  What you don't know, until you have the surgery (lumpectomy or mastectomy) is whether you already have IDC or microinvasion (a tiny amount of IDC). Even with early stage IDC, waiting a few extra weeks is really unlikely to cause a problem.  There are many women on these boards who have long delays to treatment (waiting for mastectomy, in particular).  I also waited almost three months from the lumpectomy to the radiation, due to bureaucratic issues with the large cancer treatment hospital I used (mine was also grade 3 with necrosis).  I hope the rest of this journey goes smoothly for you.

  • Annette47
    Annette47 Member Posts: 957
    edited November 2014

    It was about 2.5 months between my initial bad mammogram and my surgery. Much of that was because the center where I had my biopsy was closed for 3 weeks due to a power outage caused by Superstorm Sandy. Even so, it most likely did not affect anything regarding treatment or prognosis. Except in rare cases (like IBC), breast cancer doesn't grow fast enough that a few weeks here or there will make a difference.

  • mefromcc
    mefromcc Member Posts: 188
    edited November 2014

    I don't know if waiting will make a difference for you, but for me it didn't. I had a sterotactic biopsy within a week of my mammogram which found the DCIS , but my lumpectomy was not until the next month, and the little piece of DCIS that was left behind along the needle track had not gone invasive. Like you, I spent the wait worried about what was growing in there yet to be found.

  • Lindab007
    Lindab007 Member Posts: 17
    edited November 2014

    Thank you all for your response! I feel better now, still not happy about the time in between, but not as nervous.

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