What have you done for testing for ILC, post-treatment?

Deblc
Deblc Member Posts: 479
edited March 2015 in ILC (Invasive Lobular Carcinoma)

Went for my first post-treatment mammo on my remaining breast and all seems well but I am still worried. My MO only prescribes mammograms for follow up testing after treatment. I did not know my cancer was ILC until after surgery. Biopsy before surgery had indicated that it was ductal and they originally thought that it was a lot smaller than it turned out to be, therefore I opted for uni mastectomy, per BS's recommendation. The tumour ended up being a lot larger than shown on mammo/ultrasound, so I asked my MO if I should do MRI follow ups, instead of just mammograms, on the remaining breast.She says no, not necessary. I am not comfortable with that but she is adamantly against MRI unless the mammo indicates I need one. Can you tell me what you have done re follow up screening for ILC after treatment is finished? Thanks.

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  • LeonieA
    LeonieA Member Posts: 1
    edited February 2015

    Hi. I would get an opinion from another doctor. My mammogram showed a 1 cm mass, MRI showed 2 cm, lumpectomy showed the tumor was actually 6cm with another, much smaller one nearby. Then when I had bilat mastectomy, a third tumor was found. You cant rely on mammograms to find lobular cancer and I'd be really weary of a doctor who wants to rely on them. I'm no expert, but thats my experience. :)

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  • Momine
    Momine Member Posts: 7,859
    edited February 2015

    I am with Leonie, get a second opinion or a third or a fourth if necessary. I believe the standard recommendation is to rotate between mammos, MRIs and ultrasounds, but you should ask an expert (or several). What does the BS say about this?

    One thing I have noticed with my own MO is that he treats all kinds of cancers, so he knows a lot about how to manage cancer treatment and how to poison people without killing them etc, but he does not typically know the finer details of various cancer types.

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  • Deblc
    Deblc Member Posts: 479
    edited February 2015

    Thanks for the input

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  • intheclub
    intheclub Member Posts: 46
    edited February 2015

    Two oncologists and my breast surgeon all said lobular wont show up on a mammogram. They refer to lobular as "occult" when it comes to seeing it on mammogram in other words it just doesnt show up. I would be most uncomfortable with the advice u have received. So important you are under the care of clinicians who know alot about lobular as its such a tricky sneaky cancer.

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  • Nomatterwhat
    Nomatterwhat Member Posts: 587
    edited February 2015

    Been there-done that!!!! My mammo showed a 2.9 cm of DCIS with a LX to follow.  The mammo, MRI or U/S never showed the ILC.  During surgery they found a 7 cm mass of ILC, in rightie.  I insisted on further testing and my BS found micro calcifications in leftie.  I had a BMX, because I am a chicken and didn't want to always worry that I would have cancer in leftie and have to go through this again.  I would get as many opinions as you need to make you comfortable. 

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  • MaureenA
    MaureenA Member Posts: 39
    edited March 2015

    I encourage you to meet with another oncologist(s) or your breast surgeon. I have relied heavily on my breast surgeon who is familiar with ILC. Both oncologist and breast surgeon recommended breast test every six months alternating between a mammogram and an MRI; mammogram in September/MRI in March. My health insurance is not always willing to cover the cost of the MRI. Good luck.

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  • Deblc
    Deblc Member Posts: 479
    edited March 2015

    Thanks all. I have an appointment with my BS next week. You might see from my profile that I live in Jamaica, and from all accounts (from my BS, radiologist, RO and the doctor who just today took out my port) my MO is the best there is here, experience wise. She goes all over the world to participate in BC symposiums, etc. But I am still not sure. In any case my BS had told me from before that if I feel I need to get more testing he would arrange it. So I will see what his opinion is next week. Thanks so much for the feedback.

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  • gemini4
    gemini4 Member Posts: 532
    edited March 2015

    Maureen, has your insurance company ever refused payment, or do they usually come around? If the latter, was it due to your doctor's persuading them to do so? My six-month MRI is currently in dispute -- insurance company initially told my RO no, but my BS's office is going to push harder for it to be approved. My RO explained that they said they'd cover if there was an indication but not as a routine screening. My breasts always feel lumpy and dense to me, so I'm sure I could point to something that neds a closer look.

    Edited to clarify -- I had my mammo in November so theoretical I should have the MRI in May. The dispute is whether to approve having the procedure -- it hasn't happened yet. I had an MRI last in October of 2013.

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  • fizzdon52
    fizzdon52 Member Posts: 568
    edited March 2015

    As you can see from my Stats I was diagnosed in January 2014 with ILC. Since then I have had several mammo's and 2 x MRI's, because MRI's are the best way of detecting Lobular. I would definately question her comments and/or get a second opinion.

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  • Deblc
    Deblc Member Posts: 479
    edited March 2015

    Gemini, what you say is interesting. Wondering if it is an insurance issue in the States. That wouldn't apply to me as I have to pay for it anyway. My MO maintains that they don't do additional testing (apart form mammos) as routine screening because it makes no difference to survival. I have read that that is also the protocol in the US and Canada, but from this board I see it differs a lot, depending on your doctor.

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  • momand2kids
    momand2kids Member Posts: 1,508
    edited March 2015

    so for the first 5 years post diagnosis, I had an MRI then 6 months later, a mammogram--repeat. My onc was fine with this- since a mammogram did not pick up the 2.5 cm tumor the first time.

    Last year I decided to go to annual mammograms with an MRI every other year. I have become a fan of less is more testing.... based on my thyroid experience in 2013-2014-where in checking my thryoid nodules, they found a nodule on my lung- and I had to be followed for that all year-- and that was stressful....

    I know my body-- and I figure that ILC in general grows pretty slowly--many of us were told it was in there for 8-10 years before it was found, so I figure an MRI every other year should work.


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  • MaureenA
    MaureenA Member Posts: 39
    edited March 2015

    Gemini, There have been several scenarios with my insurance company. In one case they refused to pay for the MRI, and my wonderful oncologist at the time (since retired) spent an hour on the phone with the insurance company physicians and eventually they approved. More recently, when the insurance company refused, my current oncologist's staff did no or very little follow-up with the insurance company, and the MRI was never authorized. I now ask my breast surgeon to write the MRI order; his staff will follow-up when the insurance company denies and thus far, MRI has been approved although it is sometimes a month or two late. Good luck with yours!

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  • Rdrunner
    Rdrunner Member Posts: 309
    edited March 2015

    Debic.. im in Canada.. and yes the protocol is mammos but there is one protocol and it doesnt distinguish between different BC types, which is the problem. However, here in Canada, high risk women ie premenopausal, dense breasts, braca 1 and 2 positive and or strong family history and previous missed ILC on mammo.. gets an mri, a radioligist has to sign off on it. Personally i would insist.. if its lobular. Mammo completly missed mine and mri missed smaller ones but caught the big one.

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  • First_Wild_Signs
    First_Wild_Signs Member Posts: 23
    edited March 2015

    I will definitely have a thermogram. I had a BMX on the 26th, received my path report Wednesday which showed 2 additional tumors that were missed by MRI and ultrasound. I had ILC.

    I had a thermogram 3 years ago and was told there was a problem and to follow up with MRI and or ultrasound which showed nothing. Following up with the standard methods does not mean thermograms are ineffective as some have stated.

    Women whose breasts won't show cancer on a mammogram

    http://www.dailymail.co.uk/health/article-2551208/Women-breasts-wont-cancer-mammogram.html

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  • Lily55
    Lily55 Member Posts: 3,534
    edited March 2015

    I refused to have mammograms and insist on an annual MRI, simply saying every time no it did not show the cancer last time so I have no faith in it.........I hate MRI´s and they are more invasive than mammos but.....

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