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Missed Diagnosis

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cutiekate
cutiekate Member Posts: 6

I got a 3D mammogram and ultrasound every 6 months since 2017, but the radiologist could not find the cancer due to dense breast tissue. I was recently diagnosed with IDC stage 2 and tested positive for BRCA 2. Is there anyone who has had a similar experience about missed diagnosis?

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  • edj3
    edj3 Member Posts: 1,579
    edited February 2020
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    What makes you think this is a missed dx?

  • voraciousreader
    voraciousreader Member Posts: 3,696
    edited February 2020
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    i am sorry to hear about your diagnosis. I had mammos and sonograms due to dense breasts and mine was mistaken for a cyst on sonograms for three years and completely missed on mammograms. I am 10 years post diagnosis and doing well

  • minustwo
    minustwo Member Posts: 13,116
    edited February 2020
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    Many cancers grow for 2-5 years before they can be seen or felt. Sorry about your diagnosis, but I hope you can move ahead with treatment now.

  • OCDAmy
    OCDAmy Member Posts: 289
    edited February 2020
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    I was diagnosed with a large IDC 6 months after a mammogram. It was grade 2 so not particularly fast growing so it was there during the mammogram. I have dense breasts. That is what I chose BMX, I will never trust mammogram again. I am doing well now and you will too.

  • Yogatyme
    Yogatyme Member Posts: 1,793
    edited February 2020
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    My bc never showed up on mammogram. Was found on MRI. It was 7mm, so may not have been large enough to be seen on mammogram. I have the BRCA1 mutation and my screening was mammogram and breast MRI alternating every 6 mo. My tumor was found on my very first MRI. I’m so sorry you are going through this and that moving through treatment goes well.

  • simonerc
    simonerc Member Posts: 154
    edited February 2020
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    My tumor did not show up on 3D mammogram, including the day where they did an ultrasound as well and found it and did biopsy. I did not know at the time that I had a Pathogenic genetic mutation. I had dense fibrocystic breasts. Mammograms, even 3D, can miss cancer. Especially is dense breasts. Sorry you find yourself here. Hopefully all will go as smoothly as possible for you!


  • gb2115
    gb2115 Member Posts: 553
    edited February 2020
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    Not necessarily a missed diagnosis. Density can obscure things and breast cancer grows for a long time before it can be noticed.

  • Badluckbdaygirl
    Badluckbdaygirl Member Posts: 55
    edited February 2020
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    cutie, I truly believe my cancer has been there. I too get both alternating MRI’s and 3D mammos. I’ve been told I have an older person wimpy cancer, yet I asked my MO how a 7 mm grew that fast between screenings. She said it’s probably been there. I have extremely dense breasts. Aka “busy boobs”. This was my driving force for my BMX. It was an MRI that found it, not the previous 3D mammo.

    This seems pretty common. You will get through this time

  • laughinggull
    laughinggull Member Posts: 512
    edited February 2020
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    I had dense breasts. After 20+ years of breast screenings (started in my 20s with ultrasound, graduated to yearly mammogram at 40), I had a clear 3D mammogram, and 3 months later I found myself a lump in my underarm and a solid mass in the breast of the same side. The cancer in my nodes was 1.5cm and had extra capsular extension, the cancer in my breast was 3.5 cm, all this didn’t happen in 3 months. Plus I had symptoms -pain in that breast only- for at least a year prior

    When I found the underarm and breast lumps myself, went to the breast surgeon who told me this surely was cancer. Sent me for diagnostic mammogram, which still couldn’t find anything.

    After five months of chemo, got a pre-surgery MRI that also came out clear, however the surgery revealed a 2.5 cm tumor present.

    So my experience is that, if you have dense breasts, mammograms can indeed miss your cancer.

  • annabelle2
    annabelle2 Member Posts: 27
    edited February 2020
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    I was sent home "free and clear" after a mammo & US for what I thought was a small lump. I never got a copy of the mammo report, and nobody said a word to me about dense breast tissue.

    10 months later I had a much larger lump in the same breast, diagnosed with Stage 3C, grade 3, ki67 95%, axillary lymph nodes clear but it had spread to my internal mammary node.

    If someone has the Brca gene and/or dense breast tissue and/or a family history, they should be having regular MRI's in addition to mammo and/or US.


  • floral
    floral Member Posts: 10
    edited February 2020
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    I was clear last year with dense breasts. This year I’ve got (had) a 2.5c IDC, Grade 2, with Micrometastasis in one sentinel node. And I’ve been getting 3D for at least three years. Don’t think that happened in a year. My GYN also apparently didn’t feel it a month before the mammo (good bye to her). I’m pretty convinced it’s been there. We’ll never know. Nobody’s fault, they just couldn’t see it. I’ve had multiple fibroadenomas throughout my life, not one of which has ever shown up on a mammo. I told my sister, also dense, that she needs to ask for ultrasound.

  • laughinggull
    laughinggull Member Posts: 512
    edited February 2020
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    Annabelle2: heartbreaking!

    Floral: I also had fibroadenomas before, which were monitored with ultrasounds for a while after first detected, and never appeared in my mammograms. But my BS explained to me that fibroadenomas do not evolve into cancer, and that the monitoring should consist on looking for the harbingers of cancer (e.g. calcifications in a mammogram) rather than checking on the fibroadenomas, which are totally benign.

  • summerangel
    summerangel Member Posts: 182
    edited February 2020
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    LaughingGull, your BS is right that fibroadenomas don't turn into cancer. However, they should be watched for unusual growth, especially in middle-aged or older women. A large fibroadenoma can make a tumor immediately next to it hard to see, or, in rare cases (between .001% and .003% of all cases), a tumor can grow inside a fibroadenoma. That's what happened to me.

  • Phoenixrose8
    Phoenixrose8 Member Posts: 68
    edited March 2021
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    I had a missed diagnosis that still infuriates me to this day.

    I go to my annual appointments every year and had normal blood tests every time. In May of 2019, I had a regular women's annual exam.Everything was normal. Then I got a huge cyst on my chin. Then I noticed that I had a lump over my collarbone. I went straight to urgent care. They said it's because of my cyst draining into the lymph node (which my PCP also agreed was possible and I later researched and was completely possible especially since all my blood tests were fine still!). They gave me some medicine and said to see my PCP, who sent me to the ENT, and that was where I did my first biopsy.

    It's because my cancer was only visible on a mammogram. It couldn't be felt even the May before because it was by the chest wall.

    I understand that having these tests before the age of 40 (I think that's the age, I could be wrong) can bring up a lot of unnecessary false positives, but if I new when I was 37, it would have been easier to treat. Why isn't the age lowered? All my doctors did the absolutely correct thing as far as I’m concerned, and I don't blame them at all. I just don't understand why the age isn't lowered.

  • aram
    aram Member Posts: 320
    edited March 2021
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    I have dense breasts and family history of breast cancer. For the last 20 years, I had multiple ultrasounds every year, and for the last 3 years every 6 month. I had a mamogram 3 years ago with BIRADS 0, so technically useless. My last ultrasound was in November 2020 and I got BIRADS 2, and was sent home to come back in 2 years. In January 2021, found a lump on my left breast. I did a mamogram on February 1st and still BIRADS 0. The same day ultrasound guided biopsy resulted in my cancer diagnosis. So yes, for women with extremely dense breasts mamagrams can be quite useless.