ILC Ultrasound missed cancer in lymph nodes

Sissy43
Sissy43 Member Posts: 6
edited June 2018 in ILC (Invasive Lobular Carcinoma)

I was Clinically Node Negative but then cancer was found in 2/2 lymph nodes removed during the SLNB. I have now had all my lymph nodes removed and these are currently being tested. I'm so worried that lots more lymph nodes are going to be involved as imaging missed these 2. Does anyone have any reassurances? Than you

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  • wallycat
    wallycat Member Posts: 3,227
    edited March 2018

    I'm so sorry you are here and dealing with this. When I was diagnosed, I never had any scans or checks for lymph nodes. Once it was determined my biopsy was cancer, I went for an initial lumpectomy and SNB. Since ILC is notorious for being difficult to detect, it doesn't surprise me that ultrasound missed stuff. I'm hopeful you get more information soon. Waiting is the worst. Best to you.


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  • Sissy43
    Sissy43 Member Posts: 6
    edited March 2018

    Thank you so much for your response, it helps talking to people who know how you feel. This is my 2nd diagnosis of breast cancer. I had ILC on the right side 4 years ago however that time the lymph nodes were all negative. I think finding out at least 2 are positive this time has really thrown me and knowing they were not visible on a ultrasound or CT scan makes me so scared that there are going to be more. Especially as one of the nodes had 7mm of cancer with ECE. Waiting is just the worst.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited March 2018

    Someone told me on this site long ago that having + lymph nodes doesn't automatically doom us to Stage IV or metastasis. Lymph nodes act as filters to cancer cells (look up the definition) and so I believe that my lymph nodes caught the c before it made it further out into my body.

    My pet scan and other scans were clear following dx; I had two breast MRIs before I had my BMX two years later, and both were clear.

    I hope that helps. I was terrified when I was told + lymph nodes, but really what it meant was that I was higher risk for recurrence, and I feel I'm doing everything I can (including seeing my doc every six months and taking my AI) to stave off recurrence. It's all I can do.

    Hugs

    Claire in AZ

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  • Teenieweenie
    Teenieweenie Member Posts: 2
    edited April 2018

    Hi Everyone,

    Every test I had including ultrasounds, 3D mammograms, CT scans and MRI’s with contrast pre-op missed my lymph nodes. My surgeons and Oncologist thought and testing hadn’t shown ANY lymph node involvement. My tumor was thought to be a possible 2.9 centimeters. On May 24,2017 I underwent a full mastectomy of my right breast, nipple and areola taken as well. They had me on the table for what was supposed to be a 4.5hr procedure including my expander. I was on the table for 8 hrs. My tumor was 6centimeters and I had 17 lymph nodes removed. By the time I was done my margins were 12” and clear but I ended up with no breast tissue left. Thank god I have amazing plastic/reconstructive and Oncology surgeons! I have had my right breast reconstructed and my left lifted and reduced. My Oncologist is extraordinary human being I love her! I had 6 microscopic bone Mets also. So I thought I was dealing with stage 2 invasive lobular carcinoma. My post op diagnosis is stage 4 metastatic invasive lobular carcinoma EP + HER 2 -with microscopic bone mets in 6 spots. I am on targeted therapy Kisqali and letrozole. I have had no chemo no radiation and I am doing really well. I had a complete hysterectomy and breast reconstruction on Dec 11, 2017. I feel grateful to be alive and to be thriving. All my scans are clear. So I press on! I expect to live a long life and everything I do supports that belief! Power of positivity❤️ I turned 60 this past fall. Attitude of gratitude😘

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  • Icietla
    Icietla Member Posts: 1,265
    edited April 2018

    Welcome, Sisters.

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  • Moderators
    Moderators Member Posts: 25,912
    edited April 2018

    Indeed, welcome, and thank you Teenieweenie for sharing your positive attitude!!


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  • Sissy43
    Sissy43 Member Posts: 6
    edited April 2018

    Thank you so much for all your replies and positive attitude, I have really found this site to be invaluable. My final pathology is back and the remaining 25 lymph nodes that were removed were clear and the tumour measured 2.7cm. It's a relief to have all the information and facts as my imagination was running wild whilst waiting for the results!

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  • Teenieweenie
    Teenieweenie Member Posts: 2
    edited April 2018

    such great news!!! You must be very relieved and ready to put it all behind you!? Now onward and upward!

    Take good care and enjoy your life😘

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  • Sissy43
    Sissy43 Member Posts: 6
    edited April 2018

    Thank you Teenieweenie 😘

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  • Dodgerick
    Dodgerick Member Posts: 72
    edited June 2018

    I'm looking for another breast cancer survivor who has had ILC with lymph node involvement, has had the ONCOTYPE DX and scored low enough to skip chemotherapy. I REALLY need some reassurance, PLEASE! It's driving me crazy!!! After being diagnosed on November 29, 2017 with ILC and DCIS in my right breast, I had bilateral mastectomies on January 6, 2018. I decided that with a 40% chance of cancer also showing up in my left breast, my best bet would be to have them both removed...as a side note, the pathology reports shows they found LCIS in my left breast! Glad we opted for BMX! The 2cm tumor was ER+, PR+, and HER-2 negative. My surgeon hadn't anticipated lymph node involvement and so she just removed the sentinel lobe. On my followup appointment on February 7, 2018 my surgeon told me that the pathology report found the sentinel lymph node she had removed was involved by cancer with a 1.9cm extracapsular extension present. In spite of lymph node involvement, my oncologist suggested the ONCOTYPE DX to determine if I would benefit by chemotherapy. About a month later my ONCOTYPE DX came back with a score of 17, and my oncologist determined chemotherapy would not be necessary or add significant benefit in this situation. I was so excited that I wouldn't have chemo! On April 25, 2018 I started 5 weeks of radiation to my chest wall and regional lymph nodes, I completed radiation with minimal side effects on May 31, 2018. I'm looking for encouraging news from other breast cancer survivors of ILC and DCIS with lymph node involvement, that have also skipped chemotherapy....PLEASE?

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