Mammogram "Occult" (sounds evil because it is)

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Anonymous
Anonymous Member Posts: 1,376
edited March 2016 in DCIS (Ductal Carcinoma In Situ)
Mammogram "Occult" (sounds evil because it is)
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  • MrsPotter
    MrsPotter Member Posts: 1
    edited March 2016

    Hi. I'm new -- I'm 42 and mum of 2. I was diagnosed with intermediate grade DCIS last week after having a breast reduction 3 weeks ago. It came as a surprise to me because I had a mammogram and ultrasound just prior to the surgery and everything came back clear, and I had no lumps that my doctor could feel. So you can imagine my surprise when the plastic surgeon phoned to say that all tissue removed in the surgery was sent to pathology and that my left breast had a 1.5cm (that's 15mm) Intermediate grade DCIS. He was almost as surprised as me as a cancer that big "should" show up in mammogram, and "should definitely" show in an ultrasound. This is where the "occult" (something evil that can't be seen) comes in and it freaks me out.

    The multidisciplinary team recommended a BMX for a variety of reasons: firstly, because the DCIS was discovered in the lab after it had been taken out, they have no idea where in breast it actually came from and therefore it's impossible to go back in and get the margins. Secondly, because it was "occult"  in the left breast, if it was to come in the right breast then it would guaranteed be occult. I would never know because mammograms and ultrasounds are useless and I would never be able to find it. If it came back, it could be a stage IV invasive before I knew it was there. This is quite horrifying and I realise how lucky I am that I had that breast reduction because without it, I never would have discovered it.

    But my question to the group is; How common is 'occult' cancer in mammograms and ultrasounds? Do you all put your faith in mammograms? I don't - so now I don't know what to put my faith in. Annual MRI's??

    Anyway, I am still healing from my reduction; bruised, swollen and stitched but I am having a BMX in 2 weeks with a 2-stage reconstruction. After decades of wanting a breast reduction, I FINALLY got my perfect boobs, then BAM they're gone in a matter of weeks. I am trying to absorb all of this but it feels like a freight train.

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  • Meadow
    Meadow Member Posts: 2,007
    edited March 2016

    Mrs. Potter, so sorry to hear this! And yes, so shocking, I am sure. I can only imagine your dismay, like you said, you get the reduction, and then wham. But I am thankful you found out. I do not know of occult cancer.. I will do some reading....but I do not have confidence in mammography. It did not catch my cancer either. Please explore this wonderful site, I hope you find support and info here. Hugs to you!

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  • Bounce
    Bounce Member Posts: 574
    edited March 2016

    My cancer was occult on the mammogram - even when they knew where it was and where to look.

    It was seen by ultrasound though. And then MRI.

    I won't be putting my lumpectomy breast into any mammogram machine again. So far since surgery and radiation I have an annual MRI - but I expect the insurance company to start making a fuss about that soon!

    Who knows what I will do then! Just ultrasound? Pay myself for an MRI? Every year! So many questions.


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  • mammalou
    mammalou Member Posts: 823
    edited March 2016

    My 3.6 cm IDC tumor was not seen on mammogram. I had a mammogram two weeks before my breast turned red because of spread to the skin. Unfortunately, I have have come to learn that it is not all that unusual. They still order mammograms and MRIs for my healthy breast. I have very little confidence in the mammograms but I do them anyway. I think MRI is much more reliable.

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