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Newly diagnosed - different pathology results post-surgery

Hello, this is my first cancer experience (51 YO still having regular periods) and am new to all of this. Initial biopsy diagnosis was DCIS grade 3, right side. Had a lumpectomy with flap reconstruction 8 days ago and am recovering as good as can be. Received the post-surgery pathology report and it indicates the DCIS is negative and that it is pleomorphic LC in-situ, along with a new friend, a 9.5 mm ILC. Not sure how common this is when the post-surgery diagnosis is so different from the biopsy? (The ILC was not detected in the prior mammo and MRI and the then "DCIS" was detected in the mammo only.)

So this changes the plan going forward now (radiation and hormone therapy) and am waiting to hear from the team of doctors after they consult. Likely a sentinel lymph node biopsy is ahead but not sure it's so easy with the flap reconstruction work that was done. Plus now I'm worried - if the ILC is so elusive, how can you not worry it is still in other parts that remain or on my left side? Trying not to reel out of control thoughts and just focus on upcoming task at hand. I know this is just a small sample of what so many others go through, on much bigger/more difficult levels. Just trying to take it all in right now. Thanks.🙏

Comments

  • moderators
    moderators Posts: 7,683

    @akemisan17,

    Welcome to Breastcancer.org. We're so sorry for the reasons that bring you here, but we're really glad you've found us. We're sure you'll find our Community a wonderful source of advice, information, encouragement, and support — we're all here for you!

    We're so sorry to hear of the evolving information, and we know it can be so frustrating, confusing, and scary until you have a clear plan. Please know you're not alone - it's very common for diagnoses to change after surgery. Surprises are no fun, but now you know what you're dealing with and can face it head on. We've all got your back as you navigate this diagnosis and treatment.

    Others will surely be by to weigh in with advice and encouragement. Welcome again and please let us know if we can help at all.

    —The Mods

  • mandy23
    mandy23 Member Posts: 92

    Hi @akemisan17 !

    So sorry you had to join us here.

    Unfortunately, ILC is know as the "sneaky" cancer. My 1st dx I had very widespread DCIS and nothing appeared as invasive. I did have a mastectomy as there wouldn't have been much left by the time they got rid of that. In my case, they then found 2 small ILC tumors.

    I 'get' that feeling about how do you know there isn't something that was missed. You don't know unfortunately. I had an option to have another mastectomy, but didn't do it. I did have breast MRIs every year or 2 because that is supposed to be the best way to catch it early (especially ILC) even though it didn't find my tumors nor yours. BUT they were very small and maybe if they had been slightly larger or in different locations (?), they would have been caught. It's hard that there are so many unknowns.

    For me, it took 19 years for a recurrence. The most surprising thing was that even though I expected them to tell me it was once again ILC….it was IDC … go figure.

    Hopefully, your team will get together and give you a plan moving forward.

    Please continue to post your questions and concerns.

    It does help to know others have been through what you are going through. Never downplay your experiences from others. BC is a shock and a life-changing experience no matter how big or how small your tumor is or what treatments you need.

    Take care.

  • maggie15
    maggie15 Member Posts: 766

    Hi @akemisan17 , I’m sorry you were blindsided by the change to your pathology after surgery but it does happen. No tumor ever showed on my mammogram, just suspicious calcifications. During the ultrasound biopsy a 1.6 cm tumor was seen and the pathology was DCIS. My breast surgeon was suspicious that there was something larger there so a SLNB was added to my lumpectomy. It turned out she was right; there was also a 3.2 cm IDC tumor. It never showed on any imaging because there were multiple radial scars in the margins.

    I sympathize with your concern that there might be something else there. My surgeon said it was possible that other tumors could be hidden by radial scars and only be found when big enough to be felt by a manual exam. I’m hoping radiation destroyed anything else and just have to live with the uncertainty.

    It means another surgery but it should be possible to do a sentinel node biopsy. It’s worth doing since it can influence your treatment. I had one positive node so axillary radiation was added. Your team will find a way to do this without interfering with your flap.

    Once there is a plan in place everything is easier to deal with. All the best going forward with your treatment!

  • kotchaj
    kotchaj Member Posts: 205
    edited December 2023

    Hello @akemisan17,

    UGH. I'm sorry that you are going through this. Mine changed as well when I had surgery. I was first diagnosed with IDC, grade 2, stage 2B. I had surgery and ended up with IDC with mucinous features, grade 2 stage 3C. It really threw me for a loop and I felt the same as you. I had a single mastectomy, I had clear margins, and have been NED since surgery, however, just that change in my pathology change has me concerned and wondering still. So far so good and not knowing has become part of the way it just is. I had 20/21 lymph nodes positive. I had radiation and felt like that was another good thing in my arsenal against reoccurrence. Sending you big hugs.

  • akemisan17
    akemisan17 Member Posts: 2

    Wow thank you all for your responses. It is sad all the variations everyone has to go through, and it is encouraging to read how strong you all are! It is admirable and it makes me hopeful. I know it is one step/day at a time in what will be a likely long road ahead! Wishing you all the best. Thank you.🙏

  • sanazsabeti65
    sanazsabeti65 Member Posts: 11

    Hello @akemisan17,

    Hope you got more clarification on your treatment plan at this point. my sister was diangosed with ILC in october. Her initial mammo showed 1.5 cm tumor, MRI should 7cm tumor, her pathology report after double mastectomy showed 4.2 cm tumor and LCIS associated with it. From what I have learned so far there is no screening method that can show exactly what`s going on until pathology report comes out but breast MRI is the best option available at this point for ILC screening. Best of Luck

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,644

    I think sanazsabeti said it well.

    “…what I have learned so far there is no screening method that can show exactly what`s going on until pathology report comes out but breast …”

    The biopsy is always the bottom line and it is not at all uncommon for biopsy results to differ from imaging. Take care