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Anyone here got 3/3 positive nodes ?

cancerian
cancerian Member Posts: 11

got my path report after double mastectomy 10 days ago. initial diagnosis was widespread DCIS. Now 3 out 3 sentinel nodes are positive. anyone out there with this twist? i was not expecting this. i just feel so sad and helpless. Still waiting on a call from the surgeon.

Comments

  • calinana4
    calinana4 Member Posts: 14
    edited March 2023

    I was also caught off guard with path report. Assured after biopsy that it was not in nodes. After surgery, path showed cancer in 3 of 5 lymph nodes and size of tumor was 2.5 instead of estimated size of 1.8. It felt like I received more bad news with each doctor appointment. Doing great 2 post diagnosis so it does get better! Hopefully the shock and sadness will lift soon. Best wishes

  • wondering44
    wondering44 Member Posts: 252
    edited March 2023

    cancerian,

    I was caught off guard by my surgical pathology too. I went from about a 1cm tumor to an 8.5 cm tumor with extensive DCIS. I didn't know pathology could change from the biopsy path to the surgical pathology. I wouldn't have minded an education on it beforehand, but maybe that would have caused more stress with knowing there was a possibility it could be worse.

    Try to make a list of questions to ask when talking to your surgeon again.

    • Did your HR/PR/HER2 change?
    • Do you do the Oncotype if you didn't already?
    • Did the treatment plan change?
    • Do you need radiation? If so, how many treatments?
    • Do you need hormone blockers if HR/PR are positive?
    • Did recurrence risk change? If so, what is the plan moving forward?

    There are plenty of questions that you could ask that others may share with you.

    It is hard to stay upbeat with the changed results, and going through the rollercoaster of emotions that come with all of it is okay.

    I hope you have already talked to your surgeon. If you still need to, reach out to your surgeon. You don't need to have more stress by waiting days to get answers. Waiting is always the challenging part of the cancer roller coaster. I wish you the best with your upcoming discussion with your surgeon.

  • kotchaj
    kotchaj Member Posts: 209
    edited March 2023

    My surgical pathology was completely different than my biopsy pathology. I started out with IDC, Stage 2B and after surgery, I went to IDC with mucinous features and mucinous carcinoma stage 3C, 20 out of 21 nodes cancerous. It threw me as well as I had neo adjuvant chemo and my tumor GREW, it didn't get smaller.

    That surgery was in December of 2021 and I've been NED ever since. I told my doctor to not give me his prognosis, because I was going to ignore it and it would be easier to do if I didn't hear what he thought I would be. They've called me a unicorn. I told them I'd take it as a compliment and I have.

    Hang in there. Sending you hugs.

  • janehicks
    janehicks Member Posts: 48

    So sorry to hear that all of you had surprises post surgery. Just curious, did you have MRIs before surgery. I'm still wondering how effective those are.

  • cancerian
    cancerian Member Posts: 11

    Yes i had 1 MRI before surgery. according to my surgeon, they are not reliable.

  • yippeekiyaymf
    yippeekiyaymf Member Posts: 25

    I felt thrown under the bus as well. I knew the size accuracy could change and the grade, but mine was so small that they needed to use ultrasound to insert a fine wire to guide the surgeon and despite clear ultrasound … when they did my sentinel node biopsy it was in 2/3 :( :( :(

    In retrospect I am glad I thought I'd be done in a couple months with a lumpectomy and minimal radiation—- rather then the lumpectomy then chemo then radiation and then endocrine therapy ( which i'm about to start) ..but you know better to be positive and make your decisions based on what you know rather then living in the land of "maybe"'s. Someone has to be the unicorn like kotchaj…why not you? ….It would have rocked my world one way or another as I'd never have suspected the lymph node involvement…..

    Just letting you know I hear you, and it sucks…..

  • dutchiegirl
    dutchiegirl Member Posts: 76

    My story is a bit strange. I knew it was in my nodes before surgery, but didn't know how many nodes were positive. After surgery, I had 4 out of 6 nodes positive but my surgeon missed two nodes. I found them when I was examining myself a week or so after my mastectomy. My surgeon felt them when I went in - I could see the panic on her face. She did a punch biopsy and the two both came back positive for cancer. In the end, I had 6 out of 8 nodes. One thing that I'm grateful for is that she left half a node in my axilla. It was palpable and I used it to measure the success of my chemotherapy and radiation. In the end, my oncologist declared that I had the "cleanest axilla he's ever seen"! Cheeky monkey! By the way, this happened over four years ago and things are going very well for me. I just had my 4.5 year check up and was given a clean bill of health!