should I or shouldn't I

momand2kids
momand2kids Member Posts: 1,508
edited June 2014 in ILC (Invasive Lobular Carcinoma)

need some advice.

have my 6 month onc visit in late May-this is usually coupled with an MRI, mammo done 6 months later.  Have had 3 clear MRI's over the last 3 years so I am thinking of not having it this year and doing it next year--sort of moving to an every other year rotation. Onc was never a big fan of MRI, but I insisted and she agreed-so I think she would go either way.... what would you do? What shoudl I consider... I am 3.5 years out and doing fine....  

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  • toomuch
    toomuch Member Posts: 901
    edited April 2012

    momand2kids - I think that ultimately, it depends on your level of comfort. Do you trust mammograms, ie was your ILC picked up by mammo? Mine wasn't and I can't imagine that I will ever want to forego my yearly MRI. But that's just me. Hopefully, some others will weigh in with their opinions.

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  • dlb823
    dlb823 Member Posts: 9,430
    edited April 2012

    I had multicentric disease, including a couple of ILC lesions only seen on MRI.  I had a unilateral mx w/Diep recon, and my UCLA BS does an MRI every other year.  So I had one in 2010 and will have another one this year.  Alternate years I have only mammos and, if needed, an u/s, and I'm very comfortable with that schedule.    Deanna 

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  • Hipline
    Hipline Member Posts: 195
    edited April 2012

    My diagnosis looks very similar to yours and I am 15 months out. My mammogram did not pick up my cancer so for me the MRI is the best way to go. Everyone is unique and you have to do what feels right and what a trusted Dr can advise for you.

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  • Racy
    Racy Member Posts: 2,651
    edited April 2012

    If you don't have the MRI you should have an ultrasound with your mammogram if you are under 50, have dense or cystic breasts or if your BC did not show on a mammogram.

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  • momand2kids
    momand2kids Member Posts: 1,508
    edited April 2012

    Hi all

    thanks so much for our responses... in 2008 mammogram did not pick up the bc--- got it in an office visit 6 months later.... so I know mammogram technology is not the best for me...

    However, from all that I learned through diagnosis, chemo, radiation-- it seems that the lump had probably been there for a while--- and grew very slowly over time.... 

    Part of why I am on the fence is that  I just hate the waiting--the test results, the stress.... I am trying so hard to minimize that in my life now..... I was adamant about these annual MRI's- but I had ER+ so does this mean MRI's every single year?  Also, the thing about the MRI technology is that they have to follow up on every little thing... I have had 5 MRI's since my diagnosis, all clear..... I am just starting to wonder if every other year is better--- I think my onc thinks so..... 

    I agree, ILC is different and I do have dense breasts and I feel fortunate to evern have the option of an MRI--I think I am talking myself back into it... sigh..... 

    I think I am just tired of it all--I want so much to go off my lupron and femara-- I am just looking for some way to just be "finished", do you know what I mean?   

    I almost never think of bc, except for these appointments---- sigh, sigh, sigh...

    thanks for all of your comments..... always looking for good thinkers to help me get out of my own way!!!

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  • sgreenarch
    sgreenarch Member Posts: 528
    edited April 2012

    Dear momof2kids,

    I'm late weighing in, but I know how you feel. I'm also scheduled for my yrly MRI on May and its stressful.



    My BC was picked up on a mammogram by an excellent mammographer. It was the first time I'd gone to her and my suspicion was that it had probably been there, and missed, for a while. I try not to look backwards, what's the point? But I feel very grateful to have switched and found her. She insisted on an immediate MRI at that time, and a second, smaller 9mm area was found, only on the MRI. Without the MRI I would have only had a lumpectomy and tumor #2 would have been missed. I had a unimx and now have mammograms and MRIs every six months, staggered by half a year. She actually thinks I could wait two years between MRIs, but that makes me more nervous at this point. At my last MRI, last May, they found a tiny 'something.' biopsied it and it was a benign cyst. Was a crazy week of waiting but I think I'd still prefer all this close looking with these perhaps unnecessary biopsies to waiting two years and possibly missing one weird fast growing thing. No easy way here but I guess you choose what makes you the least uncomfortable.

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  • sgreenarch
    sgreenarch Member Posts: 528
    edited April 2012

    Forgot to add that it's great to hear that you're doing so well...

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