ILC Diagnosis - some questions

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Staceybee
Staceybee Member Posts: 72
edited May 2018 in Just Diagnosed

I was just diagnosed with ILC today after biopsy and after 1cmx1cmx1cm architectural distortion was found last week. I am just in process of finding the appropriate doctor but have so many questions now. I have read that on the MRI (have not had one yet) the actual tumor(s) for ILC are found to be bigger than the architectural distortion that showed up on the mammo and US. Is that the usually the case? I just want to be prepared for what I should expect.

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

    Welcome, Staceybee. I am so sorry about your diagnosis.

    It is often the case that ILC tumors are found to be larger than they appear in medical imaging.

    Here are some BCO discussion threads that may be helpful. As to the first thread, you can see the members' diagnoses under their posts. As to the second thread, take a look through the linked content, also.

    https://community.breastcancer.org/forum/5/topics/856812?page=1#top

    https://community.breastcancer.org/forum/71/topics/862161?page=1#top

    We are here for you.

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  • Staceybee
    Staceybee Member Posts: 72
    edited April 2018

    Thank you

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

    You are welcome. (((Hugs)))

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

    I've read that it varies....some gals actually had smaller tumors, some larger. My tumor ended up larger, but again, that isn't a given. Good luck and so sorry you are joining us here....the club no one wants to join.

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  • RollTide
    RollTide Member Posts: 1
    edited April 2018

    Should I have local or general anestesti

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  • Moderators
    Moderators Member Posts: 25,912
    edited April 2018

    Dear Rolltide,

    Welcome to the community. We are sorry for what brought you here but glad that you reached out to our members. Perhaps you could tell us a bit more about your question? Are you anticipating surgery and if so what exactly will be the procedure. Let us know how we can help you to navigate your way around the boards. The Mods

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  • beach2beach
    beach2beach Member Posts: 996
    edited April 2018

    Mine was found on sono. The size they orig estimated on biopsy was the size they listed on the final pathology after I had a mastectomy. ILC is sneaky the way it grows more flat..thats why many don't feel a lump. I didn't. Originally the radiologist thought it was my own breast tissue because the way it showed up.

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  • Veeder14
    Veeder14 Member Posts: 880
    edited April 2018

    Mine was diagnosed on MRI only, it didn't show up on US or Mammogram. Estimated to be 5 mm and turned out to be 8 mm after biopsy. I was told the MRI was 2 dimensional so it couldn't see the other 3 mm behind.

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  • Georgia1
    Georgia1 Member Posts: 1,321
    edited April 2018

    StacyBee, my primary tumor ended up the same size on both US and MRI. But - the MRI found a second, tiny little tumor about a quarter of an inch away and my surgeon took them out in one "clump." So I think the main takeaway on ILC is that's it's not more dangerous but it is a little harder to size since it can present in a straight line or as more than one site. But in the end, treatment won't really be different from that of our IDC sisters.

    Hope that helps...this is a crazy ride.

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  • Staceybee
    Staceybee Member Posts: 72
    edited April 2018

    Thank you everyone for the replies! I received my ILC biopsy result last week but the first appointment with the surgeon my husband wants me to see (based on research he did) was not for 12 days. I asked if I could get testing or an MRI done while I wait but was told that nothing happens until the first appointment. Getting through every day with no information on what I am dealing with or action plan is Terrible! All I have is the mammo, ultrasound and pathology report and I keep combing through them for any clues to determine the tumor size. The architectural distortion on ultrasound was 1cmx1cmx1cm and the biopsy samples were 1-2cm with ILC and ALH. That is all I know. Last night I even made 1cm and 2cm models out of Playdoh to try to get a sense of what I am dealing with. I guess no real question, just thanks for listening

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  • momand2kids
    momand2kids Member Posts: 1,508
    edited April 2018

    Stacey

    so sorry you find yourself here--- when I was dx- they thought it was 1.2 cm from the ultrasound and MRI (was not picked u on a mammogram)... after my lumpectomy, it was measured at 2.5 cm-- I will admit, I freaked out-but the truth is it was a "bigger, lazy, slow growing tumor" according to my surgeon. In the end, it is the actual biology of the tumor that will dictate treatment--is is slow growing or fast growing - which they can tell with the mitosis score (remember h.s. biology???).

    So you really want them to take out the tumor and do all the testing necessary which will really give you your action plan-- all that said, the waiting is maddening.... it is so hard to distract ourselves while we are waiting for more information. 12 days is not too long to wait,things won't really change in that time. good time to get your questions ready. This is the worst part, I promise... once you have a surgery date you will be on your way to a plan and will feel so much better!!!

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  • Teaberry11
    Teaberry11 Member Posts: 79
    edited May 2018

    Hi Staceybee

    Waiting for appointments and next steps is definitely the hardest part!

    I felt my tumor - 2 months after my annual mammogram. My doc sent my for U/S and even the radiologist couldn't see what I was feeling .. asked me to point exactly where I was feeling and then said he thought it was just dense tissue but went ahead with a biopsy. Measured the area at 1.4cmX 0.6cm When BS offered lumpectomy I asked for an MRI just to make sure since nothing showed up on mammogram. Turns out I had another small tumor is same breast - 2 areas also showed up in other breast — had more biopsies on other breast which came clear. In the end I chose a double mastectomy because of the sneaky way ILC hides. After Surgery pathology showed size was 2.2cm and small tumor in same breast was 1 cm. Be vigilant and don't be afraid to ask for more tests if you are unsure what to do.

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

    My ilc tumor was the same size on mri. I also understand that after pathology the mass was only a 1 cm mass didn't sound like a spiderweb looking thing either. No surrounding tissue showed evidence of cancer.

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  • Emgee
    Emgee Member Posts: 15
    edited May 2018

    Hi Staceybee and all -- I got my diagnosis last week after biopsy guided by tomography -- the radiologist wanted to rule out ILC, after chasing a shadow in my mammograms and ultrasound for years. MRI of both breasts is scheduled for tomorrow and a meeting with a surgeon for Friday. I have a million questions and no data whatsoever at this point. I also have a husband whose first wife died of breast cancer in 1999. He's 76 (I'm 63). I really want to stay well long enough to see him through his life's journey. It's good to find some companions for my own journey, here.

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