Scared DCIS will show up invasive

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lisagwa
lisagwa Member Posts: 232

Next week I will have double MX and sentinel node biopsy (SNB). it will then take a week for results. I am nuclear grade 3. I would like to know whether anyone else was dx with DCIS and then it became invasive after SNB results. Does being a grade 3 usually change the DCIS to invasive??

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  • cycle-path
    cycle-path Member Posts: 1,502
    edited March 2012

    While it didn't happen to me, I've seen women posting here to whom it did happen. It's fairly unusual, but not unheard of.

    Does being grade three USUALLY mean an invasion will be found? No, not usually. But I think the likelihood does increase somewhat with a higher grade lesion.

    You're in one of those waiting periods, and to a certain extent you'll still be there until the final pathology results are in. My recommendation is to find out exactly when you will get the pathology results, and how you'll get them -- phone call, letter, or whatever. IMO knowing that will help the waiting a little. 

  • 1openheart
    1openheart Member Posts: 765
    edited March 2012

    I was grade 3, had a SNB and no invasion was found.  

  • Blessings2011
    Blessings2011 Member Posts: 4,276
    edited March 2012

    Mine was just the opposite - they identified two areas of DCIS - Grade 2, PLUS two areas of microinvasion: .5 mm and 1.5mm. I had two Ultrasound-Guided Core Needle Biopsies.

    I had a BMX/recon on December 5th, 2011.

    But when my final pathology report came in, there was NO EVIDENCE of the IDC. The docs said it was so small, the core needles got it all.

  • Beesie
    Beesie Member Posts: 12,240
    edited March 2012

    lisa, on average about 20% of women who are initially diagnosed with DCIS via a needle biopsy are later found, after all the surgery is done and the pathology results are in, to have invasive cancer and/or nodal involvement.  Of course all DCIS is not alike and women with small amounts of low grade DCIS face the lowest risk, while women with large amounts of high grade DCIS with comedonecrosis face the highest risks. 

    I was in the second group - I had a lot of high grade DCIS with comedonecrosis. My needle biopsy only showed ADH but my excisional (surgical) biopsy showed more ADH, plus DCIS and a microinvasion of IDC. And I had no clear margins. When I had my mastectomy (2 1/2 months after the excisional biopsy), even though there was a lot more high grade DCIS found, there were no more microinvasions. It was all DCIS. 

    As scary as it is to think that you might have some invasive cancer, the important thing to remember is that in about 15% of the 20% of cases where some invasive cancer is found after an initial diagnosis of DCIS, the amount of IDC is very small - just a microinvasion or two, or a t1a tumor. So usually we are talking about an amount of invasive cancer that is no larger than 0.5mm. With a microinvasion, as I had, the treatment plan doesn't change at all and the prognosis barely changes.  Even with 5mm of invasive cancer, the treatment plan is unlikely to change, unless the cancer is triple negative or HER2+. 

    So try not to worry. The odds are in your favor that your final diagnosis will be DCIS.  But even if some invasive cancer is found, it's likely to be just a small amount, which will hopefully have little impact on your treatment plan.  Yes, there is about a 5% chance that it could be something more but there's no point in worrying about it - the odds are low and there is nothing that worrying will do to change what's going to happen. If you fall into that 5% group, you and your doctors will deal with it.  

    Good luck next week.  Hoping that the final diagnosis is pure DCIS! 

  • lisagwa
    lisagwa Member Posts: 232
    edited March 2012

    I am usually a very private person but I am glad that I have reached out for help in this forum. Thank you for your PM and replies. Unfortunately, or fortunately, it takes a private situation like this to bring other caring people together.

  • lisagwa
    lisagwa Member Posts: 232
    edited April 2012

    I am very fortunate. My pathology reports show that it hasn't spread. My doctor said that I don't need chemo or medication. This is a relief. Now I need to heal and think about reconstructive.


    Diagnosis: 2/2012, DCIS, 1cm, Stage 0, Grade 3, 0/2 nodes
  • proudtospin
    proudtospin Member Posts: 5,972
    edited April 2012

    hip hip hooray!

    now go party and do something to take your mind off of all this junk~~

    suggestions, a massage, facial or anything like that

  • lisagwa
    lisagwa Member Posts: 232
    edited April 2012
  • stacyk
    stacyk Member Posts: 18
    edited April 2012

    Lisa,

    I have the same diagnosis as you. I have an appointment with the surgeon on Monday. I hate this waiting. I'm glad to hear yours went well. I wish you well in your healing. Take Care!

  • lisagwa
    lisagwa Member Posts: 232
    edited April 2012

    My doctor's office telephoned me as soon as they had the pathology results. This made it easier. Stacyk- If you are willing, please share your results on Monday. Remember, in any scenario, even though unsettling, your BC was caught early and your prognosis is good.

  • TRACY327
    TRACY327 Member Posts: 2
    edited May 2012

    Same situation for me- Mammo last month found calcifications. Had core biopys done and findings were high nuclear grade DCIS with no evidence of invasion. Im scheduled May 14 for partical mastecomy with immediate reconstruction and one lymph node to be tested- I also am scared they will find some invasive cancer or node involvement.  Just have to keep thinking postive thoughts- 

  • aussie12
    aussie12 Member Posts: 462
    edited May 2012

    Hi all

    I'm like Beesie in my 50mm tumour I had 3mm invasive, luckily no lymph node involvement. I don't need chemo or rads just tamofixen which I start next week. You just don't know until you get your final pathology,  then if like me you find that you have some invasive you're very, very lucky that you found the lump and got something done about it.

  • stacyk
    stacyk Member Posts: 18
    edited May 2012

    lisagwa-

    I just saw your post - I am going for a bmx with immediate DEIP reconstruction on May 22. The waiting has been long......

  • laurakay
    laurakay Member Posts: 109
    edited May 2012

    I know what you're going through.  I died a million deaths before I got my bmx and my path reports.  I am NOT a courageous person, anyway, and also had high grade and lots of DCIS, a horrible family history of bc, etc.  As with Beesie, it turned out that I had an invasive component, but nothing in lymph nodes, and my margin was close, etc., so it wasn't all what I wanted to hear BUT I'm two and a half years out, my treatment was just the bmx (hah "just"--but, really, it's all behind me now, a distant memory already, and I love my new breasts...).  Your chances of anything in the nodes is miniscule, and even your very worst case isn't a death sentence, as this has obviously,no matter what, been caught early.  Odds are overwhelming that you will be done with bc forever after this, but even if there's some 'catch' it's unlikely to be anything that bad.  Try to focus on that?  (I didn't focus on the positive, but....So, I guess I'm hear to tell you that even if you worry a lot between now and then, things are very very very likely to be very fine!)  I will be thinking of you.  

  • lisagwa
    lisagwa Member Posts: 232
    edited May 2012

    Thanks for your comments...very encouraging. my BS said it was all DCIS. I go to an oncologist next week to ask some questions.

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