Hello. I posted a similar message in a different place. So, I am trying here instead. Here is my story:
I started having some nipple issues in September 2012. I didn't think much of it, because I read that other things could cause your nipple to itch. When it would itch, it would bleed a little, etc. I called my gynocologist in December and he said to try some over the counter cream. It seemed to help some. I had my annual mammogram in January and was called back for microcalcifications, then the biopsy, mri, etc. (I am going to mention that I am 42 years old. I have dense breasts, blah, blah, blah. I had a baseline at 35 and have had yearly mammograms since I was 38 when my mom was diagnosed with breast cancer. She isw doing great today!!!! She is my hero! ) II wasd diagnosed with high grade dcis. However, this was in the outer upper quadrant--the mri showed some action heading toward my npple and other heading toward my chest wall. My sugeon, thaought he could get clear margins due to my large brast size with a lumpectomy. I had this done last Tuesdeay;. It took 4 wires instead of the usual 2 because the area was so large. However, I would have had 20 placed just to make sure3 that they got everything that they needed to out. During my surgery they checked my sentinal node wheich I received a dye for earlier. Thankfully in the OR and in the final pathology report-all was clear there. Thank God! I did insist on a nipple biopsy to be done. This was not done before surgery, in fact, the many people who looked at my nipple told me not to be concerned. Oh, my gosh, how does this happen!? When I was called back Friday (2 days ago) they said that they hadd good news ande bad news. The good news is is that all of the tissue they removed was dcis and not more. The bad news was that my biopsy came up positive for pagets. I am beyond scared!!!!!
I was supposed to have my post op appointment on Tuesday which has turned into another consulting appointment for further surgery, etc. I am looking to you ladies for some help and assurance!!!!!!! I Have a list of questions thast I am going to ask tomorrow and Tuesday, but just couldn't wrap my head around what they were saying when they called. My mammogram and diagnostic mammogram did not show anything with the nipple and no calcifications behind the nipple. The ultrasound showed nothing on anything. Just glad it was clear. The bilateral mri showed nothing in the nipple area (oh, I had the dye contrast kind)--just the large area of dcis. Nothing showed up in the right breast of concern.
I am just reaching out to women that have had similar things. Could the dcis and this be unrelated? Would it be odd to have an invasive component with absolutely nothing showing up on anything--no palpable on anything at any time. Is Paget's considered invasive in and of itself?
It looks like I will have a mastectomy. If this is what they want to do, I will ask for both. This has been an emotional nightmare and I just can't keep pace with this anxiety and worry. I just want to live a very long time and see my beautiful daughter grow up (11) and want to be that soccer mom on the sidelines not worried about this every second of every day.
Please help and bless you for it!!!!!!!!!!!!!!!!!!
1/19/2013, DCIS, Stage 0, Grade 3, 0/1 nodes, ER-/PR-, HER2+
2/4/2013 Lumpectomy: Left; Lymph node removal: Left, Sentinel
2/8/2013, Paget's, <1cm, Stage 0, 0/1 nodes, ER-/PR-, HER2+
2/20/2013 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement
5/29/2013 Reconstruction (right)
5/29/2013 Reconstruction (left)
12/12/2013 Reconstruction (left): Nipple reconstruction; Reconstruction (right): Nipple reconstruction
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