New DCIS Diagnosis. Confused!

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Mom2ABoy
Mom2ABoy Member Posts: 170

I have been researching this stuff for several days (had my biopsy on Friday) but my pathology summary has me a bit confused. My doctor just said they'll want to refer me to a breast specialist, but that the DCIS they found was "high grade". There's a lot more in the pathology report. I'm hoping I can post some of what's written in there so others who've been down this road can help me clarify what's going on.

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  • Jelson
    Jelson Member Posts: 1,535
    edited November 2014

    so sorry you are getting the news at Thanksgiving, but in a way you do have somethings to be thankful for, 1) regardless of the grade (1, 2 or 3) you have stage 0 breast cancer - which some argue shouldn't even be called cancer. This means that the cells do not yet have the capability of breaking through the milk ducts and spreading to the breast tissue/lymph nodes and beyond. 2) now you might not agree with my logic, but this is how I rationalized my grade 3 DCIS and treatment decisions. Grade 3 DCIS is most like real cancer cells. A problem with DCIS and why some doctors are no longer calling it cancer, is some DCIS does not move out of the ducts to become stage 1- but since no one at this point knows enough about DCIS to be able to predict which will progress and which will not, there is a sense that at least some women are being treated who need not be treated at all, and others are being over-treated. However, there is less controversy about Grade 3. Your path forward is more clear, DCIS grade 3 needs to be treated. I doubt any of our physicians will advise watch and wait. Less ambiguity. I chose lumpectomy, radiation because it was Grade 3 and I had some close margins after biopsy and because mine was ER +,and I opted to take tamoxifen. AND 3) Chemotherapy is not recommended for DCIS.

    while this is a holiday for Americans and many of us are traveling or cooking or whatever, we do have an international contingent who may be able to pop in with advice and words of encouragement . In the meantime, do check out the resources on BCO.

  • Moderators
    Moderators Member Posts: 25,912
    edited November 2014

    Mom2aboy-

    We wanted to welcome you to Breastcancer.org, and tell you that while we're sorry for what brings you here, we're so glad you found our community. There are a lot of women here who've been where you are now, and can share their experiences and offer you very valuable insight!

    You may also want to check out the information we have posted on our main site on DCIS. You can find helpful articles here and here. There's also some information here on cell grade.

    Please keep us posted as you find out more, and definitely feel free to post some of your pathology findings. As we mentioned above, our members are very knowledgeable and can definitely help you try to understand what you're reading.

    The Mods

  • JLM1
    JLM1 Member Posts: 7
    edited November 2014

    Diagnosed last week.  Quite a suprise!  No family hx of BC. I have a hx of dense breast and fibrocystic breast ds/cyst in L breast.  Normal mammograms for the last 13 years until Oct this year. Increased scattered microcalcifications L breast on mammo,no lump on exam.  Noticed early this year that Lt breast seemed puffy and veins were more noticeable.  Called back for additional mammo views and US. Told by radiologist most likely benign papillomas but recommended I see breast surgeon for biopsy.  BS felt it was most likely papillomas but recommended breast MRI or open biopsy because of scatted nature. . We choose biopsy. Lumpectomy done with positive results last week.  BS states he did not expect it! Path report: DCIS  2.8 cm stage 0,grade 2, ER/PR+,no nodes,no necrosis,clear margins,closest margin superior 0.8(8mm).  Additional findings: LCIS,ADH focally sever,duct cyst,microcalcifictina seen in ducts w/atypia and benign ducts.  No mention of DCIS type!!!!! HER2 testing not mentioned or done.  MO and RO follow up in early Dec,scheduled for breast MRI as well.  Based on my research so far and info from this site I am leaning towards no RAD/Tam because of side effects!!!  I'm 54yo,over weight/obese with very large breast and the Lt breast is larger than the right. Could tolerate 2nd biopsy if necessary  I plan to request a 2nd/3rd op on the path report to include Dr lagios.  This thing has really taken me for a loop and I don't want to make any decisions out of fear.  My days/nights have been consumed with internet searchs on DCIS.  I'm slowly coming out of the C fog!  I know my life will never be the same again but I want to live a normal life!!!

     Thanks for the support and insight!

    Diagnosed 11/20/14: DCIS  2.8 cm stage 0,grade 2, ER/PR+,no nodes,no necrosis, clean margins/closest margin superior @ 0.8(8mm)


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

    Hello, I am another who was Dx with high grade DCIS. The best information is available here at BCO, I would avoid Google, because there is a lot of info that is questionable, to say the least! We have a member named Beesie who is extremely well educated on all things DCIS. I actually printed out her info and gave it to my friends and family, so we were all on the same page, so to speak, about my Dx.

    As Jelson said, DCIS is always stage 0, but the grade 3, or high grade, is DCIS which is what I was Dx with too, is the most rapidly changing cells.

    I opted for a Umx, and Sentinel Node Biopsy, for a number of reasons, one being that I wanted to avoid rads, if at all possible. I took the chance that there wouldn't be any invasive component in my final pathology. I was fortunate, I didn't have any invasion and I was able to avoid Tamox too. It is all a crapshoot!

    I understand exactly what you are saying JLM1, I am forever changed by this, but I am almost 2 years down the road and I have no regrets about my decisions and I am comfortable with my new normal!


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