Invasive DCIS

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AnnTX
AnnTX Member Posts: 12

Hello,

I was diagnosed with DCIS and had a lumpectomy on Monday. Today, the surgeon called because he said that the margins are clear however the first pathologist believes there is evidence that the DCIS is invasive. The second pathologist is reviewing the information tomorrow and I'll meet with the surgeon Friday for the verdict.

But I'm confused: how can margins be clear but it's still possible the DCIS is invasive? Or perhaps it's now Stage 1 or higher cancer? He also made it sound like we may have to test lymph nodes.

Has anyone had this experience and what was the outcome?


Thank you!

Comments

  • ballet12
    ballet12 Member Posts: 981
    edited June 2015

    Usually, they mean that there is what is called "microinvasion" where in certain areas, the cancer cells have broken through the ducts in a small way.  I think it is a very small invasion (under 1 mm).  This would be Stage 1A.  If the invasion is more substantial than it isn't really DCIS with microinvasion, but invasive breast cancer next to DCIS. If there is even microinvasion, they often biopsy the sentinel node(s). As far as margins go, it is certainly conceivable to have "clean" margins, but to have the microinvasion be within those margins.

  • AnnTX
    AnnTX Member Posts: 12
    edited June 2015

    Thank you so much for your reply! It helped me to know better what I might face.

  • jc254
    jc254 Member Posts: 439
    edited June 2015

    Yes, it happened to me. I had a lumpectomy for DCIS and the final pathology showed IDC along with the DCIS. The invasive component didn't show on several mammograms or on an MRI prior to surgery. I was really shocked as I had no idea it was even a possibility. I was treated at a well respected NCI designated cancer center by a top surgeon. He was surprised by the pathology report too. This happened two years ago and I'm fine now. You will be too but your treatment might be more involved and take longer than you anticipated.

  • Moderators
    Moderators Member Posts: 25,912
    edited June 2015

    Hi Ann-

    We want to welcome you to our community here at BCO. We are so sorry for the circumstances that have brought you here, but we're glad you found us, and hope you find this to be an informative and supportive place.

    Like Ballet12 mentioned, if a small amount of the cells have broken through the breast duct, it would be considered DCIS-MI (DCIS with microinvasion). If a larger amount of cells have broken through, it would no longer be considered DCIS, but Invasive Ductal Carcinoma, or IDC. If it is indeed IDC, or even DCIS-MI, the doctor will want to test your nodes, as whether or not they are clear will determine what your treatment plan will be. You can read more about DCIS and how it's diagnosed here: http://www.breastcancer.org/symptoms/types/dcis/diagnosis.

    It's important to note that there is no clear definition of "clear margins", and it really varies greatly from doctor to doctor. Some prefer a 2mm rim of healthy tissue between the edge of the cancer and the removed tissue, while others consider a 1mm margin to be clear. It could be that each pathologist has differing opinions as to what they consider a clear surgical margin, so it's important to ask when you meet with them what their standard for definition is.

    Please keep us posted on how your appointment with the surgeon goes, and what the outcome is, we'll be thinking of you!


  • AnnTX
    AnnTX Member Posts: 12
    edited June 2015

    Thank you, JC254. If you don't mind me asking, did you have to have chemo because they found cancerous cells in your lymph nodes? I didn't have any lymph nodes removed during my lumpectomy and I'm assuming that is going to be my next step. I can deal with that but I really really dread chemo.

  • AnnTX
    AnnTX Member Posts: 12
    edited June 2015

    Also, thank you moderators. I'll check that site for sure.

  • Larkspur
    Larkspur Member Posts: 88
    edited June 2015

    Ann, I had an experience somewhat like yours. I suspect that what you and others have described is actually fairly common.

    In my case, I was diagnosed with low-grade DCIS last December, saw a breast surgeon in January, and scheduled surgery for Feb. A pre-surgery MRI led to a subsequent biopsy and some news I wasn't expecting: a diagnosis of Stage 1 invasive cancer adjacent to the DCIS. I'd had a month to get used to the idea of having DCIS, and less than 24 hours before surgery to wrap my mind around having Stage 1 breast cancer.

    At least, getting the diagnosis at that point meant that the surgeon could remove the sentinel lymph node at the same time of the cancer surgery. The lymph node was clear, and chemo was not among the recommendations for me--a huge relief, as I was dreading it also. Here's hoping that you get similar news!

  • jc254
    jc254 Member Posts: 439
    edited June 2015

    My lymph nodes were clear.  After the IDC diagnosis, I had the Oncotype test and my score was on the high end of the middle range indicating chemo may be beneficial.  The chemo recommendation was quite a shock for me as it had never even been mentioned as a possibility prior to surgery.  Chemo turned out to not be nearly as bad as I imagined.  I was able to work fulltime throughout and even saved my hair using cold caps.  I'm glad I did it for the extra peace of mind.  I don't mind answering questions so ask away!

  • AnnTX
    AnnTX Member Posts: 12
    edited June 2015

    Thanks again, Larkspur and JC254! I found out today similar news which is IDC. My surgeon said it puts me at Stage 1.

    I have a sentinel lymph node biopsy scheduled for next week. My surgeon said if they find cancer cells in the lymph node, that automatically puts me at stage 3.

    Still waiting to hear bacon the ER/PR status from this week's lumpectomy before I know right now if I need chemo, too. My surgeon suspects my oncologist will order an Oncotype test after next week's biopsy.

    This all sounds similar to what others on this thread have gone through. Knowing this in advance of today has made me more accepting and peaceful about it, so thank you all so much. I have to believe there's a better side after getting over this hill…

    My final question: I now find that, with every minor hurt/itch/feeling in my body, I find myself wondering "OMG, is that cancer? Has it moved to my stomach? Does my shin hurt because now I have bone cancer too?" Did anyone else struggle with these? Am I normal with this!? :)

  • Larkspur
    Larkspur Member Posts: 88
    edited June 2015

    Ann, yes, I think just about all of us have had the anxieties you describe: "That pain in the middle of my back isn't going away. Could it be spine mets?"

    As everyone else here can confirm, you'll feel less worried once you have some answers and a treatment plan in place. Hang in there.


  • lintrollerderby
    lintrollerderby Member Posts: 483
    edited June 2015

    AnnTX: I'm sorry you have this worry. Ballet12 is correct--if an invasive component is found, then the diagnosis changes to either DCIS-Mi or IDC with DCIS, depending on the size and amount of the invasive breast cancer. There is no Invasive DCIS, but there is often a finding of a microinvasion or more in an area that was previously thought to contain only DCIS. As to your other question, one can have clear margins, but have invasive cells if the entire area containing the invasive portion was removed. Therefore, there is no tumor involved in the margin (making them clear), but upon inspection of the tissue, an area or focus of either a microinvasion or larger was discovered. ANY discovery of invasive cells means you are no longer dealing with a pure DCIS diagnosis, and therefore, the minimum staging would be Stage I.

    This lead me to the next thing I wanted to say. I would be very leery of a surgeon who throws around incorrect staging guidelines like that. If your axillary sentinel node is found to contain cancer cells, this does not automatically bump you to Stage III. In fact, if the invasive tumor is less than 2cm, there is no distant spread (not counting the axillary lymph nodes), then depending on the amount of cells in the node, the designation would be either Stage Ib or Stage IIa. And the deciding factor between those two is the amount of cells found in the node.

    Here are the staging guidelines for breast cancer, and I hope they help to make you feel better about what the surgeon stated:

    Breast cancer stage grouping

    Stage 0: Tis, N0, M0: This is ductal carcinoma in situ (DCIS), a pre-cancer of the breast. Many consider DCIS the earliest form of breast cancer. In DCIS, cancer cells are still within a duct and have not invaded deeper into the surrounding fatty breast tissue. Lobular carcinoma in situ (LCIS) sometimes also is classified as stage 0 breast cancer, but most oncologists believe it is not a true cancer or pre-cancer. Paget disease of the nipple (without an underlying tumor mass) is also stage 0. In all cases the cancer has not spread to lymph nodes or distant sites.

    Stage IA: T1, N0, M0: The tumor is 2 cm (about 3/4 of an inch) or less across (T1) and has not spread to lymph nodes (N0) or distant sites (M0).

    Stage IB: T0 or T1, N1mi, M0: The tumor is 2 cm or less across (or is not found) (T0 or T1) with micrometastases in 1 to 3 axillary lymph nodes (the cancer in the lymph nodes is greater than 0.2mm across and/or more than 200 cells but is not larger than 2 mm)(N1mi). The cancer has not spread to distant sites (M0).

    Stage IIA: One of the following applies:

    T0 or T1, N1 (but not N1mi), M0: The tumor is 2 cm or less across (or is not found) (T1 or T0) and either:

    It has spread to 1 to 3 axillary lymph nodes, with the cancer in the lymph nodes larger than 2 mm across (N1a), OR

    Tiny amounts of cancer are found in internal mammary lymph nodes on sentinel lymph node biopsy (N1b), OR

    It has spread to 1 to 3 lymph nodes under the arm and to internal mammary lymph nodes (found on sentinel lymph node biopsy) (N1c).

    OR

    T2, N0, M0: The tumor is larger than 2 cm but less than 5 cm across (T2) but hasn't spread to the lymph nodes (N0).

    The cancer hasn't spread to distant sites (M0).

    Stage IIB: One of the following applies:

    T2, N1, M0: The tumor is larger than 2 cm but less than 5 cm across (T2). It has spread to 1 to 3 axillary lymph nodes and/or tiny amounts of cancer are found in internal mammary lymph nodes on sentinel lymph node biopsy (N1). The cancer hasn't spread to distant sites (M0).

    OR

    T3, N0, M0: The tumor is larger than 5 cm across but does not grow into the chest wall or skin and has not spread to lymph nodes (T3, N0). The cancer hasn't spread to distant sites (M0).

    Stage IIIA: One of the following applies:

    T0 to T2, N2, M0: The tumor is not more than 5 cm across (or cannot be found) (T0 to T2). It has spread to 4 to 9 axillary lymph nodes, or it has enlarged the internal mammary lymph nodes (N2). The cancer hasn't spread to distant sites (M0).

    OR

    T3, N1 or N2, M0: The tumor is larger than 5 cm across but does not grow into the chest wall or skin (T3). It has spread to 1 to 9 axillary nodes, or to internal mammary nodes (N1 or N2). The cancer hasn't spread to distant sites (M0).

    Stage IIIB: T4, N0 to N2, M0: The tumor has grown into the chest wall or skin (T4), and one of the following applies:

    It has not spread to the lymph nodes (N0).

    It has spread to 1 to 3 axillary lymph nodes and/or tiny amounts of cancer are found in internal mammary lymph nodes on sentinel lymph node biopsy (N1).

    It has spread to 4 to 9 axillary lymph nodes, or it has enlarged the internal mammary lymph nodes (N2).

    The cancer hasn't spread to distant sites (M0).

    Inflammatory breast cancer is classified as T4d and is at least stage IIIB. If it has spread to many nearby lymph nodes (N3) it could be stage IIIC, and if it has spread to distant lymph nodes or organs (M1) it would be stage IV.

    Stage IIIC: any T, N3, M0: The tumor is any size (or can't be found), and one of the following applies:

    Cancer has spread to 10 or more axillary lymph nodes (N3).

    Cancer has spread to the lymph nodes under the clavicle (collar bone) (N3).

    Cancer has spread to the lymph nodes above the clavicle (N3).

    Cancer involves axillary lymph nodes and has enlarged the internal mammary lymph nodes (N3).

    Cancer has spread to 4 or more axillary lymph nodes, and tiny amounts of cancer are found in internal mammary lymph nodes on sentinel lymph node biopsy (N3).

    The cancer hasn't spread to distant sites (M0).

    Stage IV: any T, any N, M1: The cancer can be any size (any T) and may or may not have spread to nearby lymph nodes (any N). It has spread to distant organs or to lymph nodes far from the breast (M1). The most common sites of spread are the bone, liver, brain, or lung,

  • AnnTX
    AnnTX Member Posts: 12
    edited June 2015

    Lintrollerderby, wow thank you! This is great. Yeah, I'm unsure how I would jump from Stage 1 to 3 unless he was seeing something he didn't want to tell me…which doesn't really make sense at this point.

  • Luttece
    Luttece Member Posts: 35
    edited July 2015

    hello


    I was diagnosed with DCIS invasive stage 1 and had a lumpectomy followed by the genetic testing Oncotype DX which determines wether you need chemo or radiation therapy. Did u have that test done?

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