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Mammograms missed my cancer

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wondering44
wondering44 Member Posts: 261
edited July 2021 in Just Diagnosed

Mammogram 04/2018 - Biopsy 04/2018 & 10/2018, left breast. microcalcifications - negative results

Mammogram 04/2019 - negative results

Mammogram 08/2020 - negative results

Saline breast implants 11/2020

Shooting pain in nipple, right breast 2021. Complained to plastic surgeon who said to wait until 07/2021 to look at since it is probably due to augmentation.

Lump, bruised area, & dimples found in right breast 06/23/21

Exam with NP 06/25/21. She said probably scar tissue. Referred for 3D mammogram and ultrasound of right breast.

3D M & US 06/27/21. Radiologist said to expect cancer result. Referred for core biopsy.

Nipple discharge, right breast 07/05/21

Biopsy 07/06/21. Radiologist said to prepare for cancer diagnosis with Pathology Reports.

Invasive Ductal Carcinoma and DCIS diagnosis in right breast. 07/08/21

MRI scheduled tomorrow for staging.

No family history of breast cancer.

Anyone else have experience with why cancer would get missed on mammograms?

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  • moth
    moth Member Posts: 3,293
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    some cancers grow fast, some are not really visible on mammograms, especially if you have dense breasts. That's why for some women, ultrasound and breast MRIs are recommended. (if you think you might have dense breasts - some regions now require this to be reported on a mammogram - then check out this https://densebreast-info.org/introduction-to-dense... There are photos of mammograms and you can see how difficult it might be to find an abnormality)

    I had a clean mammo just a few months before diagnosis with IDC.

  • wondering44
    wondering44 Member Posts: 261
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    Hi Moth. Thank you for your reply. I am still surprised at all of it. I am sure at some point the shock goes away. I have read about interval cancers. I am wondering if mine is interval or missed due to my dense breasts. I asked two doctors how the cancer was not diagnosed earlier. I have not found an answer yet. I will keep asking.

    Honestly, I am a bit afraid I will not get a good result today at the MRI. I have been sleeping a lot since April and started having back and chest pain behind my right breast during runs approximately a month ago. I have not told my family I am afraid yet. I don't want to see my husband cry yet. he is an amazing person who watched his mom go through breast cancer eofre we met.

    And I have dreams/goals. Dreams I have not finished yet, but dreams I am working on prior to dx.

    What gets you through your days with the confidence to keep a smile?


  • dutchiegirl
    dutchiegirl Member Posts: 76
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    hi Wondering, I’m so sorry you have to be here but also glad you found us. I also had a mammogram a few months prior to finding the lump. The report came back with EXTREME DENSE BREAST TISSUE. I should have asked for an MRI as I had other symptoms at the time. I found the lump a few months later and was staged at 3a. Breast cancer is very prevalent in my family - my mom and both her sisters have had it. Mammograms do work for some, but not for all. I do hope that there comes a day that those with dense breasts are moved on to an MRI, especially if they’re experiencing other symptoms.

    It was hard to smile and stay positive during the early days after diagnosis. Staying busy helped but it was always there with me. During treatment, I recognized that I wasn’t doing well, from a mental/emotional perspective. Our cancer centre offers counselling and that was what started me on a better path. My therapist recommended an anti-anxiety med and it has helped immensely, along with my counselling appointments. I am in a much better place now and cancer only pops into my head once in a while.

    My wish for you is that you will go on to realize your dreams and goals. My mom is 23 years out from a dire diagnosis but is doing well. All the best to you



  • beesie.is.out-of-office
    beesie.is.out-of-office Member Posts: 1,435
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    I've had breast cancer twice.

    The first was seen on my mammogram - but my follow-up ultrasound was completely clear. This isn't unusual when breast cancer presents as calcifications, because calcs often don't show on ultrasounds. My subsequent MRI showed a much larger area of concern than the mammogram, and it turned out that the MRI was right. My small breast was completely full of DCIS, along with a tiny microinvasion of IDC.

    The second was not seen on my mammogram and in fact for only the second time in my life I had a perfect BIRADs1 mammogram (good years were BIRADs2 and I had a lot of BIRADs3) - but was spotted on an ultrasound. I had the ultrasound only because the tech agreed with me when, during the mammogram, I spent the time bitching about only having one screening modality despite my breast cancer history and dense breasts. She convinced the radiologist to schedule a follow-up ultrasound. So I had a perfect mammogram and then was diagnosed with IDC two weeks later, after an ultrasound and biopsy. The timeline would have been even quicker if Christmas and New Years hadn't fallen in between my two screenings.

    wondering44, good luck with the MRI. Hoping for no surprises (except good ones)!

  • wondering44
    wondering44 Member Posts: 261
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    Thank you for your reply. I think I will take a look at the counseling the cancer center offers here. The doctors mentioned it at the first appointment. I didn't think I would need it. Maybe I do. :-)

  • aram
    aram Member Posts: 320
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    wondering44, it is a hard question to answer. No imaging is perfect. I had ultrasound in Nov 2020, and got BIRADs 2 after years of BIRADS 3. I was told to come back in two years. About 3 months later I found a lump and it was cancer. I asked my doctor what happened? He didn't have an answer. He said maybe it was too small, I am still surprised how it can grow from small to 3 centimeters in 3 months. I believe ultrasound missed it too. That is why MRI is recommended for dense breasts.

  • cyathea
    cyathea Member Posts: 334
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    Hi wondering44, I’m sorry you find yourself here.

    Your situation is quite common from what I’ve read and experienced. Please take comfort in knowing that even with a STRONG family history of BC, my doctors monitoring me closely due to dense breasts AND being in a clinical trial that included 3D tomosynthesis mammography and ultrasound—they still missed my cancer for two years. Fortunately, the ultrasound found it on year 3 (the last year of the trial).

    So, even when we do everything “right”, some of us still get a diagnosis that is later than we would expect. Two years ago, I was where you are now. Yes, it was hard to see my wonderful husband cry. Telling friends and family was all-consuming for a few weeks, as well as the voracious reading of every medical article and technical study I could find about my situation. It’s a process.

    The good news is that treatment probably won’t be as bad as your fears about it. (Not saying it is easy, but most of us have some worst case scenarios running around in our heads.) You can still have your dreams and goals, but you might have to change your timeline and give your body some extra time to heal.

    Everyone goes through this in their own way and no single way is best. For me, this forum is a lifeline. The stories of thrivers keep me hopeful (including my mother, my sister and two of my aunts!) Those who face greater health challenges remind me to make the most of the times when I feel OK. I know that I will follow in their footsteps at some point, but I can plan for those eventualities while still being very present in the joys and challenges of today.

    I’m learning to be kind to myself at the same time that I urge myself to be better at living. My MO told me that he had a patient who actually ran a long distance race after chemo. He wasn’t saying that I should be like her. What he was trying to communicate is that I shouldn’t assume that I couldn’t do “normal” things until I had tried. Sometimes we surprise ourselves that way.

  • wondering44
    wondering44 Member Posts: 261
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    Hi Cythea,

    Thank you for sharing. It really helps to read what others are going through to help me know I am not alone in this fight.

    I got my MRI results back today (only took a couple of hours after the MRI). It id great to have it moving forward quickly. I have read where women are waiting for weeks for results. That is not an easy wait for anyone.

    My results show the tumor diagnosed with IDC 2.2.cm. Another tumor associated with it 1 cm. the third tumor associated with it is .5 cm. Extensive DCIS. The 3D mammogram and ultrasound only picked up one tumor and DCIS was minimal at best. The area is approximately. 5.5 cm to 6.4 cm. That was gut wrenching to the report. I guess that is explanation enough on how simple it is for tumors and microcalcifications to get missed on mammograms.

    It is a lot to think about. Still has my head spinning that so much gets missed on these tests. There has to be a better way to get women diagnosed quicker.

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,955
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    wandering,

    I'm glad you have gotten some results back. Mammograms that miss bc are not what I'd call common (using bco as a measure of what is common and what is not presents a very stilted view of things) but it is known that they are not a perfect tool. As a matter of fact all imaging modalities have their flaws. It is frustrating but remember that bc comes in several different types, hormone profiles and presentations. Breast cancer is not one disease but more like variations on a theme. Overall, mammograms have been an effective diagnostic tool but certainly not a perfect one. Can you imagine how difficult diagnosis was before their advent? Mammography was not in common use until the late 1960’s to early 1970’s.

    All the best for your treatment. Take care,

  • oceanbum
    oceanbum Member Posts: 3,644
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    Hi wondering,

    I was diagnosed with bilateral invasive ductal carcinoma in 2017. The mass and calcifications in my right breast were detected by mammogram. After the biopsy on the right came back positive for cancer my breast surgeon sent me for an MRI on the left to "make sure we weren't missing anything". I'm so thankful she did. The MRI detected an aggressive mass that was twice the size of the mass on the right and a group of pre-cancerous nodules. They looked back through 3 years of my mammograms to see if they had missed anything. But since I had dense breast tissue neither the mass nor the nodules were detected by mammogram.

  • wondering44
    wondering44 Member Posts: 261
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    Oceanbum,

    That diagnosis sounds like a world of thoughts. How are you doing today with the cancer?

    I am still reeling in the fact that I thought I was safe with an annual mammogram and that I did not hear the word "MRI" until I was diagnosed. It does not make sense that that word is not used often for patients with dense tissue.

  • 1982m
    1982m Member Posts: 224
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    I had a diagnostic mammograms that didn’t pick up anything abnormal while investigating my suspicions dent that turned out to be breast cancer. The ultrasound clearly identified it, but nothing on the mammogram.

    I think it wasn’t detecte related to my dense breast I think, as well as the size of the tumour, which is only 1.8cm as of right now. Maybe the MRI will tell a different story.

  • wondering44
    wondering44 Member Posts: 261
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    Hi 1982M. Thank you for your reply. Getting the dx is a whirlwind of thoughts and emotions. My Oncologist let me know had I not done breast implant in November it is possible I would not have been diagnosed at my annual mammogram this year either. The implant contrast against the mass made it easier to see on the 3D Mammogram and also made the lump painful enough for me to notice it. Go figure. The probability that the MRI would have caught this last year for me is high. I hope to help educate women with dense breast tissue to start asking for the MRI. It easily detected the masses in my breast. No one told me to ask for one or that it is used in breast cancer detection. The insures would prefer not to pay the additional $1,500 for women to get one. $1,500 is why I wasn't educated by doctors to get one. Women are worth more and deserve more that that.

  • wallycat
    wallycat Member Posts: 1,307
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    I started the suggested mammograms at age 40 and never had an issue. At age 49, I had dreams and gut feeling something wasn't right. Went in for an earlier mammogram which was perfectly clear..just like all the others. Ultrasound showed nothing. I was not convinced. New breast MRI at the hospital so they suggested I do that. Sure enough....

    I had lobular cancer, which I understand is very difficult to detect on mammograms. Who knows how long I had that thing growing. My MRI was incorrect regarding staging/size. My tumor was 1.8cm while the MRI indicated 7mm but I have read some gals are told it is a big tumor and find out it is much smaller.

    Best to you.

  • WC3
    WC3 Member Posts: 658
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    wondering44:

    My cancer, which was palpable, was initially missed on imaging. I had very dense (later upgraded to extremely dense) breasts and this initially camouflaged the tumor on the mammogram. I'm not sure why it was missed on the ultrasound but I think it was due to the probe positioning.