False Negative Mammograms and US

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suedehead
suedehead Member Posts: 11
edited February 2018 in Waiting for Test Results

I didn't even know this was a thing until I presented with visible lumps that didn't show up on the 3D mammogram or US. I've read a lot of older posts about this....how common is it now? So horrifying.

My initial report said "scattered fibrograndular densities" would that hide things?

Sigh. xo

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  • Beesie
    Beesie Member Posts: 12,240
    edited February 2018

    'Scattered fibroglanduar density' means that your breasts aren't particularly dense, with 25% - 50% density. Approx. 75% of pre-menopausal women have density levels that are higher than 50%. So your mammograms should be relatively clear and easy to read.

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  • suedehead
    suedehead Member Posts: 11
    edited February 2018

    Thanks Beesie. Nobody went over any of this with me....just sent me on my way. I posted in the worried section...I maybe should have posted here. I have two quarter sized lumps that are visible with the naked eye.....nothing showing up anywhere on the 3D or US. I didn't like the fact that they said to just come back in year when I can visibly see lumps and dimpling....mainly when raising the arms to see, but it's still there. I have gained massive weight in the last few years...ugh, but even so it's only on one side. So my OB reluctantly referred me to a surgeon that has taken me three months to be seen.

    The stories here are so informed and heartfelt. My head is swimming. I have a massive deductible...I thought the MRI would be the next step but reading today maybe that's a bad idea as well. So confused.I go in tomorrow. Wondering what all of you experts expect or suggest for me. I am 47, no family history thet I know if. I finally go tomorrow.

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  • Robinda2970
    Robinda2970 Member Posts: 51
    edited February 2018

    anyone have to have biopsy a couple years after dcis diagnosis? I’ve had 3 biopsies. One being dcis 2 years ago. The rest before that were benign. Had lumpectomy. On tamoxifen. Radio gist just saw two spots but my dr doesn’t think it’s much of anything and he’s being cautious.

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  • suedehead
    suedehead Member Posts: 11
    edited February 2018

    Sitting in the waiting room of the breast surgeon....been waiting for half an hour. Listening to the patients chatting about their treatments, I'm about to burst into tears. I'm all alone in this state, and the world really. What a nightmare. So much love to anyone going through any stage of this waiting game, treatment, whatever. This. Is. Hell

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  • mebmarj
    mebmarj Member Posts: 380
    edited February 2018

    Hope you relay all your concerns to the specialist. Many lumps turn out to be benign, some are not. It's a good thing you are being proactive to get your concerns addressed. Best wishes-

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  • suedehead
    suedehead Member Posts: 11
    edited February 2018

    Hi ladies. I had my appointment with the surgeon this am. She was darling. She showed me my films. She said my breasts are not dense which made them very simple to read. She saw the lumps that I see...but suspects they are due to my recent weight gain...and feels both breasts have a similar pattern. She feels because I'm so stressed about it she is happy to send me for an MRI. She did warn me that other things can pop up on that. She submitted it to insurance and said the two I can do that I can come back in 6 months. It's up to me.

    She didn't feel anything in the exam that was of concern to her. I told her that I had been looking online and that I had read so many stories about false negative mammograms and ultrasounds. She said it does happen but it's very rare.

    She also said that interlobular is super slow growing. ....I told her I had become worried about that. She said it is super slow growing. Just sharing this info.

    Would love to converse with you all about this. Do you think I got good info? What would you all advise me to do? The MRI will be out of pocket.....but I don't want to live dangerously because I'm cheap....but, I don't know where I would get that sort of money either

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  • wallycat
    wallycat Member Posts: 3,227
    edited February 2018

    Indeed, I was also never informed that mammograms are not definitive. I was never told about dense breasts. I was, sadly, amongst the few that mammo and ultrasound did not show a thing. The MRI picked up my tumor. Even then, the radiologist said the lit up area looked b-9. I insisted on a biopsy. My breast surgeon said I saved my life. I don't think stating lobular cancer is slow growing is a given. Pathology is important (hormone status, lymph node involvement) and some of us are outliers from what is "expected" of the disease. Having said that, I think my cancer was there for several years because my mammos never indicated it.

    If you and your doctor are comfortable waiting, then you can revisit all of this in 6 months. If they can palpate/locate the lumps you are feeling/seeing, you may want to ask if they can biopsy them. If they are b-9, then you can skip the MRI and follow ups and the worry.

    Each of us is very different in how we process the information we are handed based on our internal stresses, worries, family situation, age, family history. Best to you on this journey none of us wants to take.


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  • suedehead
    suedehead Member Posts: 11
    edited February 2018

    Wallycat,

    Thank you for the kind reply. I am overwhelmed. I don't want to make a mistake...but I don't want to be an alarmist either. It's so tough. May I ask....were you able to feel your lump(s)?

    S

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  • wallycat
    wallycat Member Posts: 3,227
    edited February 2018

    My cancer was lobular and they tend to grow flat and long. I felt "rope-like" areas, but I had the same thing in the other, left breast, which never had cancer. I know because I had a bilateral mastectomy and they said nothing was found in the left breast. So honestly, they both felt exactly the same...same lumps, bumps, thickenings. I agree, it is such a tough call between alarmist and making a simple error that might save your life. If you plan on following up in 6 months, your odds are nothing serious will happen in that time frame. I am convinced my cancer was there for several years, unknowingly.

    You didn't say how old you are, so maybe the docs are factoring age in their experience of finding cancers or dismissing it.


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  • suedehead
    suedehead Member Posts: 11
    edited February 2018

    Hi Wallycat.

    I am 46. Unfortunately, these were the first mammograms, ultrasounds, I have ever had....so thing to compare. I was conveying a lot of concerns this poor doctor, I was adamant about these lumps. She was very sensitive to my stress, I am sure she wrote the order to cover her liability if nothing else.

    I am the type of some weirdness shoes up on my liver or something....I'd probably just lose my mind and it would paralyze me to no end. I don't know what to do. I'm wondering if having another mammogram in 6 months would be good? Also...this far has to go. I've gained about 30 lbs in a year and I'm a little person....I wonder if that would help if it's fat like she thinks.

    Thank you all for listening.

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