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To MRI or not to MRI?

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pandorax
pandorax Member Posts: 20

I had a lumpectomy 2 years ago for DCIS. I decided against radiation or Tamoxifen (though did take low does for 6 months). According to the Sloan Kettering risk calculator, my chances of DCIS returning are between 15-20% in the next 10 years.

On my most recent yearly follow up appointment ( a clear mammogram after 2 years ), I asked the nurse oncologist if having an MRI would also be advisable. She thought that given the fact that I declined radiation and hormone therapy (the "normal standard of care") and have "very dense" breasts, that having an MRI every 6 months along with a yearly mammogram, spaced 6 months apart, could be a good idea and could give me "peace of mind". Her one serious caveat though, is that there is a 25% rate of false positives. And apparently that could lead to not only unnecessary worry but unnecessary biopsies, etc. So not exactly peace of mind! I'd like to hear from others who have elected or not elected to do active monitoring that includes MRI. I am thinking that if I got the MRI, I might decide to do it at the same time as the mammogram, so as to drive myself crazy only once a year versus twice.

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  • ctmbsikia
    ctmbsikia Member Posts: 752
    edited February 2022
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    I wouldn't count on your insurance paying for both a mammo and mri at the same time. It is/was standard of care for me alternating mammo and mri, every 6 months, and I believe the mri's will go away after year 5. My mammogram is back to 1 per year.

    Did you have one when you were diagnosed? I'm not fond of them, I wish it went faster. I have had 1 biopsy that came back as fat necrosis.

  • salamandra
    salamandra Member Posts: 736
    edited February 2022
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    That is such a tough question.

    I am doing MRIs after a relatively young IDC diagnosis combined with family history. After my second one they called me back for an MRI biopsy. It turned out to be scar tissue but it was a terrifying ride. I just had another MRI this past Saturday and I'm waiting for results. I'm not super nervous but I'm also definitely not NOT nervous.

    (Actually realizing it was already Thursday just made me super nervous and I went to my online portal and there were no suspicious findings! PHEW!!. So yeah, nervewracking).

    That report makes the note that "American Cancer Society recommends annual screening MRI for individuals with a lifetime risk of 20% or greater." It sounds like you are that high just over the next ten years.

    It really does feel like a big time sink both logistically and emotionally. What I kept telling myself while I was waiting for my biopsy results last year was that if they were negative, then this roller coaster was what I'd signed up for with the enhanced screening (I'd requested it), and if it were positive, then as much as it would suck it would definitely justify the decision by finding it as early as possible.

    Anyway, I'm sticking with the MRI monitoring for now. I'm doing what your nurse oncologist suggested, alternating between MRI and mammogram every six months. On the one hand, it does sometimes feel like a LOT. On the other hand, I do kind of think that combining them would be giving up a huge chunk of the potential benefit (at minimum, 6 month earlier detection) while still having to deal with going through the procedure and the risk of false positives.

    I don't know that any of this is remotely helpful, but that's my experience and where I've ended up at least for now.

  • pandorax
    pandorax Member Posts: 20
    edited February 2022
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    Thank you both for your responses. I didn't even consider insurance (good questions) - and no, I didn't have an MRI when I was diagnosed. I guess now that I've read your responses and we've discussed false positives on MRI's, I wonder what the rate of false negatives are for mammograms - or maybe it depends on the density of tissue. Seems that a huge proportion of women have dense breast tissue - like a third?? I'm not sure that I could go through the emotional torture of the MRI (not the process, just awaiting results, etc.) - whatever the good arguments are for getting one.

  • cyathea
    cyathea Member Posts: 330
    edited February 2022
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    PandoraX, I had dense breasts, too. A research study in Italy had good results with a combination of mammogram and ultrasound. So when there was a similar study at UPMC, I signed up. It was a 3-year study and they found my cancer the third year. I heard they also found cancer in other women in the study.

    Because I had lobular cancer in my right breast, it was not visible on my mammograms. After I had an MRI, they found a small DCIS tumor on my left side, which was too small to find on the mammogram or the ultrasound.

    If your insurance won’t pay for MRI, maybe try to get them to pay for the mammogram and ultrasound combination.

    There is a risk of needing more biopsies when you have more imaging, but instead of thinking of these as unnecessary, try to see them as a good thing. If a negative biopsy lets you avoid a mastectomy,then I think it is a small price to pay to keep your breasts and avoid lymphedema and other side effects.

    One word of caution about biopsies: I actually had a biopsy in my right breast the year before I started the research study. They placed a butterfly clip to mark this area on future imaging, but I think this was actually a bad thing because they didn’t biopsy that area again until three years later and that allowed my cancer to spread. The doctors saw the clip and thought that because there was a negative result one year that they didn’t need to test that area again, but they didn’t consider the possibility that the same area could have new cancer or that there was an error during the first biopsy. Don’t let your doctor make the same mistake.