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Post-Op Pathology Feels Like Being Diagnosed All Over Again

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Maria_m79
Maria_m79 Member Posts: 5

Last year June (2021) I noticed a dent in my right breast and upon inspection I found a lump. Was diagnosed with stage 2A IDC as there were a few lymph nodes involved. All tests showed that the tumour was 1.3cm. I underwent chemo August-November and it showed that it shrunk to 0.8cm. I then had a mastectomy on Jan 6 2022 with a sentinel node dissection (they took 4).

Yesterday I went for my follow up and discovered that it was upgraded to stage 3 since the tumour was actually 3.5cm and all four nodes were positive. It felt like I got diagnosed allllllll over again! I broke down there in the room and because of covid they weren’t allowing any visitors and my support person had to wait in the car. The nurse was nice and comforting but I’m just feeling depressed about all of this... how could something like this be sooo off? I’ve had 3 mammograms, 2 MRIs and countless ultrasounds. Both my oncologist and I are baffled and the only thing we could come up with is how dense my breast tissue is. Everyone has always had a hard time finding it.

However, this really doesn’t change anything. I would still had to do chemo, I would still have to do the surgery and still have to do radiation. I’m trying to be ok with this, but starting to feel depressed and trying to find the positive things in my days. I’ve decided to have my ovaries removed with my next surgery in a few weeks to remove the remainder of my lymph nodes. I don’t have children and the fiancé and I were planning to start a family but that looks like it’ll be on a serious hold right now. I did freeze a few eggs before I started my journey, just in case. Just feeling depressed and overwhelmed right now.

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  • wondering44
    wondering44 Member Posts: 260
    edited January 2022
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    Maria_m79,

    Sorry to see you get different results with your pathology. I had a 2.2 cm tumor with DCIS on Mammogram, US and US biopsy. I kept hearing the tumor is SO small and we caught it early! The MRI showed two additional masses. All three masses ended up being one BIG tumor. I went from a 2.2 cm tumor, 1.1 cm mass, and .5 cm mass to 8.5 cm tumor with extensive DCIS at surgical pathology. I didn't realize that it could change after the biopsy or so much would get missed without surgery.

    I read from a wise person who posts on here that the biopsy is a preliminary dx to the surgical pathology. It helped me understand that the biopsy was to dx and does not always provide an accurate picture. Dense breasts and cancer seem to have that in common for mammograms, ultrasounds, and MRIs.

    It is a lot to have on your plate. Getting a strong support team in place to have a shoulder to cry on or listen to how you feel about everything on your plate may help with how you are feeling. Cancer is a roller coaster of emotions and having someone listen to you vent about disappointments and a changed diagnosis may help you get through the hard days. You will get through it. It does get better with more time that passes.

    Hoping you find some peace in your road ahead. Warm thoughts your way.


  • leesad
    leesad Member Posts: 100
    edited January 2022
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    Maria- I'm so sorry and I understand how you are feeling. I was told 6-8 mm small tiny tumor…not seen on mammo ever and picked up on an ultrasound. Biopsy and MRI both said same and no lymph node involvement. My breast surgeon even said 'oh this was a good pick up' by my radiologist who is a breast specialist as so small. Well after BMX, my teeny tiny tumor was 3 cm's with 2 of 4 lymph nodes showing micromets (2 mm). I pushed for an ALND against advice of both my breast surgeon and oncologist. Well my surgeon agreed to go back in and found 2 of 14 nodes fully positive (4 mm) with even more cancer than the sentinel nodes. It was hit after hit. My whole treatment changed as now chemo and radiation were in the cards. My Oncotype came back a very low 3 (ordered before ALND) so still had chemo but a different regime as oncologist encouraged by the 3. Had ovaries removed as well.

    It was bad news after bad news until we got the glimmer of hope with the Oncotype. I went from what was supposed to be 1A to 3A or maybe 2B as the micromets seem to confuse everyone with my staging. I wish doctors would just say we won't know anything until after surgery. As you said it felt like getting diagnosed again and again after each new finding. I feel like there was no sense of urgency initially with my doctors as they kept saying small and tiny and no worries. I wish my doctor would've gone straight to ALND during BMX but that didn't happen either. I know now with the benefit of hindsight that nothing is set in stone until after surgery but when you're in the beginning of this and trying to navigate it all, one holds on to those sizes and results. You wonder how can all of those tests be wrong and when they are it's a shock.

    Your feelings are so valid and understandable. Sending strength and good thoughts to you on your next surgeries.

    Edited to add- I can find peace in knowing that all that happened to me enabled me to finally have a full picture of what was really going on and treat accordingly. After the larger tumor size and micromets were found, I went full force on getting the complete picture. My oncologist and surgeon said to me they didn’t recommend ALND as odds were slim no further nodes were involved. I asked can you guarantee that and they said no. I said well everyone was wrong before so why would this be any different and we went back in and found positive nodes. Again it changed my entire treatment. So it all happened for a reason and I think now my situation had to play out exactly as it did.

  • moderators
    moderators Posts: 8,085
    edited January 2022
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    Hi there, Maria_m79, welcome to our community! We're so sorry you find yourself here, and we absolutely understand how you're feeling. It's so much to process! We hope this community can be a source of support for you, we're here.

    The Mods

  • 2019whatayear
    2019whatayear Member Posts: 468
    edited January 2022
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    I can relate I started with stage 1A and then found out I was BRCA2 and after surgery I was upstaged too. I think they should make it more clear that staging and treatment can change significantly based on surgery results.

  • goldcity
    goldcity Member Posts: 54
    edited January 2022
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    wondering44 - I just have to pop in to tell you that I love the quote in your signature.

    My pathology also changed from grade 2 to grade 3 after surgery. Those dense breasts get you every time. Somehow, we all seem to eventually reach a level of acceptance so hopefully you'll find your peace soon.

  • Maria_m79
    Maria_m79 Member Posts: 5
    edited January 2022
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    wondering44,

    Thanks for that insight. It makes more sense when you say that DX is just a preliminary. I’ve been coming around to the whole frustration with the dense breast tissue. My oncologist even called me and said that she even spoke to the surgeon and the surgeon was t surprised because “these things do happen.” Hearing it is not comforting, but it’s not something that we neglected to look at

  • Maria_m79
    Maria_m79 Member Posts: 5
    edited January 2022
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    2019whatayear - I soooo agree with you. They should let patients know there might be a chance of upstaging. At least we can prepare ourselves.

  • laughinggull
    laughinggull Member Posts: 512
    edited January 2022
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    Hi Maria,

    I totally understand you because I was in the same boat. I also had extremely dense breast tissue. My breast cancer was 3.5cm at diagnosis, and included an underarm lump that tested positive for cancer. But both the breast tumor and the lump shrank a lot during chemo. MRA pre-surgery (post chemo) showed all clear, as if the tumor had completely melted under chemo. Then the pathology after surgery said that the breast tumor was still 3.5cm, that there was vascular invasion, that there was no evidence of the chemo having destroyed the cancer, and I had two axillary nodes with macrometastases and signs of extracapsular extension. I was devastated and it felt the same as being diagnosed all over again, or worse. For a minute (a couple of days) I started waking up at 3am in a panic, imagining my funeral and my kids growing up without a mother.

    For a minute. Then you accept reality and move on. It would have been great to have a complete response (or close) and a really good prognosis. It was not to be. I had to let go of that fantasy, and accept I was a different type of breast cancer patient, one with more risk of recurrence that I would have liked. Not much changed in the plan, although I had radiation and also got rid of my ovaries.

    Very, very, sorry to hear that this happened to you as you were planning to start a family. Not fair. But, you are not late stage. The numbers are still on your side. You still have a life to live, a life that is worth living. Take a deep breath. It is normal to feel a bit depressed and overwhelmed right now. For a minute. Then you will digest this disappointment and things will get better.

    LaughingGull Heart

  • laughinggull
    laughinggull Member Posts: 512
    edited January 2022
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    And I agree that doctors dont explain well how unreliable imaging is, and that the only reliable staging is the done based on the pathology, after surgery.

  • hippmark
    hippmark Member Posts: 92
    edited January 2022
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    Hi Maria,

    As you can see, many of us have been in that place, including me, less than 2 weeks ago. I went from Stage 1 and that it looked very good that there was no lymph node involvement from the Biopsy and scans, MRI's, etc; to after surgery of Stage 2 and one lymph node positive. I was shocked because no one said "hey, it looks good so far, but it still could be different after surgery." So when I got the path report back from surgery, it brought me to my knees...again. Like you said, it feels like getting diagnosed all over again. I would much rather have someone tell me that it could be different so be prepared than "wham" here you are again.

    Are they sparing my already high anxiety? I think not. Now, I have to get used to the new diagnosis and treatment plan. And my Radio Oncologist kept saying it was just in the one Sentinel Node and they will treat it with radiation into my lymph nodes now. It makes me feel like, who can I believe with what they say? Like Laughing Gull said "I have to accept that I am a different kind of breast cancer patient." And that can be a hard pill to swallow at first.

    However, I am comforted that I have a plan in place and that there are so many lovely people here on this board to provide guidance and comfort. You are not alone.