Confused about Lymph nodes

angielee
angielee Member Posts: 24
edited June 2014 in DCIS (Ductal Carcinoma In Situ)

Hello Everyone,

I am new here. I found a lump in my breast while showering on Monday February 4, 2013.  Went to my medical doctor on Tuesday February 5, 2013, she sent me for a mammogram and ultrasound on Wednesday February 6, 2013 and set me up to see a breast specialist on Thursday February 7, 2013.

The mammogram and ultrasound showed bi-rad level 3 and recommended a 6 month follow up.  They felt it was a complex cyst.

Lucky for me my physician had already arranged for me to see the breast specialist the following day.  When she looked at my films she showed me a tiny bright spot within the cyst and said that should not be there and the cyst needed to come out.

I had surgery Friday February 15, 2013 to have this cyst removed and biopsied.

On Tuesday February 19, 2013 I got a call that it was DCIS.  The size was 24mm and it was Grade 2.  I was told she would need to go back in and clean up the area, so I will be having another surgery.  She told me that because it is DCIS she does not even need to test my lymph nodes because it stays in the ducts.

I joined this forum and I noticed that many other people with DCIS have noted how many lymph nodes they have had tested and some were positive.

This is concerning to me, should I insist that my lymph nodes be tested as well?

I am so grateful for this forum, I have been spending most of my time here since Tuesday trying to figure this whole scary thing out.  I am blessed to be surrounded by so many strong women on this site and your strength inspires me.  Your stories help me find hope.  I know it's "only DCIS" as I have heard from many people since diagnosis but that isn't fair! This isn't happening to them, it is happening to me. I am only 38 years old, I worry about recurrence and it turning into an invasive form eventually. Anyway, thank you!

Angie



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Comments

  • kira1234
    kira1234 Member Posts: 3,091
    edited February 2013

    Angie, if it is pure DCIS nodes don't need to be tested. You BS is correct. What often happens is some invasive cancer is found when surgery is done, and then nodes will be removed.

    As far as follow up after the surgery if the cancer is ER+ your oncologist will recomend hormonal therapy. If you had a lumpectomy more than likely they will suggest radiation theropy as well.

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  • Annette47
    Annette47 Member Posts: 957
    edited February 2013

    The reason many people have their lymph nodes tested when their diagnosis is pure DCIS is if you are having a mastectomy, that is the only chance there is to do a sentinel node biopsy, as the breast has to be present for that procedure, so in most cases, someone going in for a mastectomy will also have a SNB done at the same time "just in case" anything invasive turns up on final pathology.     If you are having a lumpectomy, and something invasive turns up unexpectedly, you can always go back in and do a sentinel node biopsy afterwards, but if you've had a mastectomy the only option would then be an axillary node dissection which is a more involved, riskier procedure, so they tend to it while they can.

    In my case, the initial biopsy showed an invasive component, which is why I had an SNB at the time of the lumpectomy, but if it hadn't she would not have done one and would have waited to see the results of the lumpectomy pathology.

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  • angielee
    angielee Member Posts: 24
    edited February 2013

    Thank you so much makes a lot of sense. I have been told I will be having another surgery to clean out the area, which I am assuming means ensure clear margins, and then I am doing 33 radiation treatments. 

    Again, thank goodness for this forum and for all of you ladies.

    I just figured out how to add my signature line, so until a that shows up I am DCIS 2.4 cm, stage 0, Grade 2, ER+/PR+

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  • cinnamonsmiles
    cinnamonsmiles Member Posts: 779
    edited March 2013

    AngieLee, when I had my lumpectomy for DCIS, I didn't get any lymph nodes tested. When I had my bilateral mastectomy a few months later, I opted to get the sentinel nodes tested (one axillay sneaked in there, too). I wanted to make sure that I did everything I could to make sure that I nipped it in the butt and did all that I could.

    There are some though, that choose not to get the sentinel and/or lymph nodes tested during the mastectomy or lumpectomy  as well. 

    It all comes down to personal preferences based on the facts of the individuals cancer, and what they want to do.

    I always talk everything over with my doctors. I always have a list of questions or concerns written down beforehand.

    Are they giving you a pre-surgical MRI? Mine did. You could always ask your surgeon about it and see what they recommend.

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  • angielee
    angielee Member Posts: 24
    edited March 2013

    Thanks cinnamonsmiles!

    I did have a mri last week and a chest xray. Those looked good. Also had genetic testing and I am waiting for those results.



    I had a second surgery today to get clean margins. So now I also have that pathology to wait for. If there are no surprises anywhere then I have my radiation consult on April 1st.

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  • april485
    april485 Member Posts: 3,257
    edited March 2013

    angielee, hoping that the second time was a charm and that your path report gives you an all clear!

    I get my path report today as it is my post op appt after my lumpectomy. I had the lumpie ten long days ago and I am nervous about that path, but I am sure glad the day is here!

    Waiting for the results is the worst part of all this!

    Fingers crossed that you are done and on to rads!

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  • angielee
    angielee Member Posts: 24
    edited March 2013

    Thank you april485, I hope all went well at your post op appointment. You have been on my mind

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