I want routine bilateral MRIs, but my surgeon says NO!

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I-AM-A-Nobody
I-AM-A-Nobody Member Posts: 12
edited June 2018 in LCIS (Lobular Carcinoma In Situ)

My right breast lumpectomy was on September 11, 2017 when I was 67:

Pathology is Invasive Ductal Carcinoma with Lobular Features (Tubulolobular); DCIS; and LCIS; Size of largest invasive carcinoma 14mm; all margins negative; two sentinel nodes negative; Tic, N0, M0; ER/PR Positive; HER2 negative. No radiation. No chemo. Started Letozole 2.5mg about 5 months ago. January 2018 Prolia injection.

My concern is the Lobular Features (Tubulolobular) and the LCIS!

I had my first post surgery mammogram on March 9, 2018, and it was only on the surgery breast and the radiologist said I did not need an ultrasound! I wanted an ultrasound!

!I cannot find much of Lobular Features (Tubulolobular) or LCIS, but what I have found, and my gut feelings are that I should have routine bilateral MRIs, but my surgeon says NO!

I got a second opinion yesterday, but like an idiot I did not push the LCIS finding in my pathology. Today's surgeon told me that she would order bilateral mammograms with ultrasounds for after lumpectomy follow ups. She also told me that it is difficult to get insurance companies to pay for MRIs after surgery. This is where I should have pushed the LCIS question since LCIS was not seen before my surgery.

Have any of you had doctors who ordered bilateral MRIs after LCIS is found after surgery?

Anyone here in Houston or the Sugar Land area who have doctors who are open to ordering MRIs since LCIS is an indicator that IDC and ILC can eventually occur after LCIS is found and in either one or both breast?

I REALLY NEED SOME HELP! My gut says I NEED the bilateral MRIs in conjuction with my mammograms and ulrasounds!


Thanks!





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Comments

  • Icietla
    Icietla Member Posts: 1,265
    edited March 2018

    I am so sorry. Others too have found themselves in the same absurdity as to how their cases are followed with imaging. Seems it often happens that Insurers refuse coverage for MRI imaging even when it has been ordered by Doctors.

    https://community.breastcancer.org/forum/113/topics/820712?page=1


    https://community.breastcancer.org/forum/113/topics/805330?page=1



    I understand MD Anderson is excellent. Might you get in there or with an affiliated Clinic?

    You Are Somebody.

    (((Hugs)))

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  • I-AM-A-Nobody
    I-AM-A-Nobody Member Posts: 12
    edited March 2018

    Thank you for responding to my post and for the links Icietla! It makes me feel like am AM SOMEONE because you not only read my post, you responded to me!

    I AM at MD Anderson! My surgeon and her P.A. have egos the size of my state! My surgeon refuses to order the MRI saying something like it is not recommended.

    My gynecologist could not feel my lump. The radiologist who read my diagnostic mammogram and ultrasound, could not feel the lump. My surgeon could not feel the lump. The P.A. said she felt the lump.

    I feel like my surgeon and her P.A. are playing God with my life!



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  • Icietla
    Icietla Member Posts: 1,265
    edited March 2018

    You are welcome. I am so sorry you have this difficulty and frustration.

    A long Holiday weekend is almost upon us. Many members will likely be off BCO for the next several days. Let us watch here for longer -- at least well into next week -- for other members' inputs. I am hoping some LCIS members can recommend other Doctors and tell you how their cases are being followed with imaging.

    For now, please try to focus on the fact that the Letrozole is the most effective medicine for your case, and believe it is working well for you. I believe you will find the help you need.

    You Are Somebody.

    (((Hugs)))

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  • I-AM-A-Nobody
    I-AM-A-Nobody Member Posts: 12
    edited March 2018

    Thank you Icietla! I just looked at my mammogram reports for the last 3 years and they all say my breasts are dense. This should help quality me for MRIs . . . if I can convince my surgeon.

    Have a wonderful holiday weekend.


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  • dtad
    dtad Member Posts: 2,323
    edited March 2018

    Hi everyone...IMO MRI screening is a must for lobular breast cancer. Mine was missed on both a 3D mammogram and an ultrasound. The only reason they found it was because an IDC tumor showed up on the mammogram so my doc did a MRI preoperatively and my breast are dense. Keep pushing! Good luck to all

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  • farmerlucy
    farmerlucy Member Posts: 3,985
    edited March 2018

    My oncologist orders yearly MRIs for me AFTER a bmx, though she goes to a lot of effort to get them approved.

    The other thought is to negotiate a cash price with the provider. I asked the last time I was there and the cash price was like $850.

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  • I-AM-A-Nobody
    I-AM-A-Nobody Member Posts: 12
    edited April 2018

    Thank you!

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  • I-AM-A-Nobody
    I-AM-A-Nobody Member Posts: 12
    edited April 2018

    Thank you dtad!

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  • I-AM-A-Nobody
    I-AM-A-Nobody Member Posts: 12
    edited April 2018

    Thank you farmerlucy!

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  • poppyseed67
    poppyseed67 Member Posts: 13
    edited May 2018

    Interesting thread. I just had my first post-excision meeting with a breast care nurse practitioner to discuss whether I should get an MRI every 12 months, alternating with mammograms (2 screenings/year). Her view (well, the hospital view, a fairly decent one outside Boston) was that they yield a high rate of false positives (30%) leading to unnecessary biopsies and stress. She also said that while MRIs might detect the presence of cancer, the 6 month lead time doesn't actually lead to a change in survival rate. I have heterogeneously dense breasts, by the way. She also said that many women she sees opt out of MRI screening.

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  • MelissaDallas
    MelissaDallas Member Posts: 7,268
    edited May 2018

    NCCN guidelines say mammogram alternated every six months with clinical breast exam for LCIS follow upand MRI can be considered.

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  • Lea7777
    Lea7777 Member Posts: 274
    edited June 2018

    "they yield a high rate of false positives (30%)" regarding MRIs

    Tell me if this is convoluted thinking: If you could endure the stress of the biopsy and the wait for the results, it might provide valuable data on the extent of LCIS and ALH, ADH present. If a whole bunch more was found on an additional biopsy that might lead to a different decision for treatment than if there was none found. There could be some benefit to the false positive, especially because further investigation as to the extent of the neoplasia would never be done otherwise.

    If even venturing down this path is nuts, call me out.

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  • rockymountaingirl
    rockymountaingirl Member Posts: 78
    edited June 2018

    The American College of Radiology recently published a report called "Breast Cancer Screening in Women at Higher-Than-Average Risk: Recommendations from the ACR." The ACR recommends, among other things, that women with a personal history of breast cancer and dense breast tissue have annual surveillance with breast MRI. They also recommend that MRI be considered for women with a personal history of breast cancer but not other factors that suggest higher risk, such as dense breast tissue, and it should be considered for women with LCIS or "atypia on prior biopsy." As far as I can tell from the report (I'm not fluent in medical-ese), the idea is that yes, MRI has a high rate of false positives, but in some women, mammography has a rate of false negatives that is more of a problem than MRI's rate of false positives. Or, to put it in a way that I can understand, if you have a personal history of BC and dense breast tissue, you are entitled to be worried about relying on mammography alone to spot trouble going forward, and you should be able to get an MRI if you want one, and other women with risk factors should at least be considered for an MRI.

    I don't know how medical institutions and insurance companies make their decisions about what screening should be offered and paid for, but I would hope that evidence-based recommendations by experts should count for something. So maybe this will help.

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  • Meow13
    Meow13 Member Posts: 4,859
    edited June 2018

    I get bilateral MRIs once a year, I am year 7 NED from idc and ilc. I am not on medicare, still on company sponsered insurance blue cross. I did notice we are having trouble with psa test for my husband on medicare.

    I am not looking forward to medicare when I turn 65.

    Anyone with extremely dense breast tissue and/or previous lobular invasive should push as hard as they can for breast MRIs. In many cases mammograms are not sufficient.

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