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Pathology report - better, worse or as expected?

Hi everyone, I have a date for my surgery in July (eep!) and I was wondering how final pathology went for you all compared to what you knew/believed about diagnosis at the point of surgery, ie was your report:

⬇️ Less favourable (more lymph nodes positive, larger tumour, more tumours, etc than you initially believed)

↔️ What you were expecting

⬆️ More favourable (less lymph nodes positive, smaller tumour, less aggressive grade etc than what you were expecting)

Thank you 🙏

I’m not scared about the surgery at all - I’m scared about the report! Lots of room for it to get worse 😩

Comments

  • iamnobird
    iamnobird Member Posts: 229

    I was diagnosed with DCIS, stage 0. My biopsy, mammogram, MRI and 2 ultrasounds all showed DCIS and no node involvement. It was extensive though (9cm) and grade 3 so we all were a bit worried there would be invasive parts in there. Surgery pathology revealed an 11mm HER2+ invasive tumor, as well as 1 positive lymph node. So, my mastectomy and DIEP procedure that should have been curative was only the start of it all. I’m in the midst of chemo now, then there is radiation, hormone blockers and all kinds of goodies.

    The lymph node shocked all of us. But after the initial shock, it does feel good to be treating it and moving towards a new phase. I hope that you don’t get any surprises. I have dense breasts and that is a lot of DCIS and my tumor was right behind my nipple. All of which made it hard to see what was really going on.

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,638

    clars,

    I completely understand your fear but am wondering how any of our experiences might pertain to you. Despite many commonalities breast cancer , through almost every step of dealing with it, can be remarkably different for each person. Yes, surgical pathology reports can differ from biopsy reports but then again, they might not. This site is also very biased in that those who have surprises and issues along the way tend to post whereas those who don’t, stop posting.

    Will answering these questions comfort you or further stress you out? The only thing I can say with certainty is that none of our experiences is predictive of what yours might be. Knowing this, here are my answers which, again, have no predictive value to you. Take care and try to deal with what you know for certain today and not speculate on what you don’t yet know. This isn’t easy to do, but worth cultivating.

    • One positive sentinel node that was not previously noted
    • I wasn’t expecting anything as I knew the surgical pathology report would be the final word. I have no medical training or expertise so I simply waited until the path report revealed its findings.
    • Grade remained the same, grade 1
    • 6 weeks after surgery, on an unrelated PET, a bone met was discovered. Biopsy showed it was a twin to my breast tumor and still grade 1. No one else’s experiences could have predicted or prepared me for this, nor should anyone take my experience and think that the same is going to happen to them. Crazy good luck has me approaching 12 years without progression which unfortunately* means nothing in terms of what others might experience.

    *I say unfortunately because their is no explanation for my survival thus I have nothing positive to share about why I have been so lucky.

  • maggie15
    maggie15 Member Posts: 759
    edited June 2023

    clars, Accepting uncertainty is for me the most difficult aspect of bc. In retrospect my tumor was there for two and a half years before it showed up on imaging. According to my biopsy I had 1.4 cm of DCIS but after surgery it turned out to be 3.2 cm IDC (with some DCIS), 1 positive node and LVI. The only thing that was the same on both pathology reports was high ER+. Pre surgery my breast surgeon had come to the ultrasound room to have a look herself and warned me that her gut feeling was a larger tumor so at least I wasn't totally blindsided. The surgical pathology explained why the tumor was hidden: multiple radial scars in the margins. For this reason clear mammograms are now not reassuring since a local recurrence would probably be discovered only by a manual exam.

    Many people end up with surgical biopsies that match what is predicted or are less serious. Treatment SEs have caused more surprises along the way but I have learned to take what comes and deal with it, just like others on this site do. I hope everything goes easily and as anticipated for you, but if there are glitches you will manage them.

  • lillyishere
    lillyishere Member Posts: 769

    Scanning can't catch everything. A biopsy is way more accurate that every expensive scanning up to date. In my case, even with all the fancy scanners in a well-known hospital, before surgery, I was told of 3 active areas in one breast and negative nodes. I was so terrified that I asked for BMX. I am so glad I did because cancer was found in both breasts and 2 out of 5 nodes were positive. How I see it is before surgery scanning is the first draft and after surgery, pathology is the final version. Lots of changes are in between. Prepare for the worst and hope for the best.

  • flowergirl1975
    flowergirl1975 Member Posts: 54

    I had a double mastectomy this past Tuesday so I don’t yet have my results back from this surgery. My oncologist said the results won’t change my treatment plan. I did not have any more lymph nodes removed.However when I started down this road it started out as atypical cells from a biopsy. First lumpectomy done, results came back with DCIS with microinvasion. Second lumpectomy done for clear margins came back extensive DCIS with another microinvasion plus a positive lymph node. None of which showed up on mamo or MRI. Which led me to a double mastectomy.
    Waiting for results is hard, it’s easy to assume the worst. Wishing you a speedy recovery from your surgery and no surprises when you get you path results come back. Hang in there!

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,638

    I think maggie15 hit the nail on the head when she mentioned certainty. We all want it in life, particularly in response to a serious disease. Clars, I wish there were some way to find certainty with a bc dx or some way to predict where you might end up based on the experiences of others but there simply isn’t. Go with what you know today, and work hard to not go down paths that might never apply to you.

  • elainetherese
    elainetherese Member Posts: 1,625

    After my lumpectomy, I was expecting the tumor to be gone and my nodes to be clear, based on "before" chemo and "after" chemo PET scans/MRIs. The 5 cm+ tumor was indeed gone and my nodes were clear. However, the surgeon did take out a tiny pocket of high grade DCIS that wasn't picked up on the scans. So, that was a plus. Scans don't pick up everything, and surgery can help remove what chemo doesn't.

    Good luck!

  • kaynotrealname
    kaynotrealname Member Posts: 343

    exbrnxgrl is completely right in her response. Nothing any of us say remotely affects what will happen with you. That being said, pathology reports differing from the biopsy happens frequently. I was told though that at least with what they were seeing with me they weren't expecting significant changes and they were right. My hormone, lymph node, grade, and LVI status remained exactly the same. What differed significantly for me was the size. The knew the total area of concern was around 36mm but thought most of that would be DCIS with about a 18mm IDC. It ended up being a 32mm IDC with no DCIS found. Since nothing else differed though, my treatment remained exactly the same as what they thought before surgery which I was told depended on the oncotype score. I didn't like going from stage 1A to 2A (or 1B based on the prognosis staging system) but breast cancer is tricky. Anyway size changes upon final pathology report is more common with women who are younger because scans are tricky to read when you have dense breasts. Either way the treatments for breast cancer are plentiful and quite good. They'll be able to handle whatever your pathology report throws at them but hopefully you won't see significant changes. For most people, some things may differ but not enough to affect treatment.

  • clars
    clars Member Posts: 39

    Thank you everyone for your thoughtful replies. And yes @exbrnxgrl you are right, none of the examples shared can predict what mine might be. I guess I just wanted to hear from people to see how common downstaging (or upstaging) is.

    I had my surgery two weeks ago today and recovery is going well. I’ll get my results next week. On my hospital discharge paperwork it mentioned there was DCIS with the IDC which had never been mentioned to me previously, so that was news!

    I’m hoping for clear margins and no surprises next week 🤞