Hi, newly diagnosed, with questions

MyJourneys
MyJourneys Member Posts: 143
edited September 2016 in ILC (Invasive Lobular Carcinoma)

Hi everyone,

I'm early 50's, hadn't had a mammogram in 10+ years because there was no family history, breastfed 4 babies over 17-ish years (widely spaced children), thought I was very low risk, previous mammogram @40 came out fine, and I just don't get sick, not even headaches until menopause and then have migraines sometimes.

But something told me I needed one - no pain, no symptoms, just a feeling. I was reassured when the girl who did the mammogram said - you look fine, so don't worry. Then they called for follow-ups. Then during the follow-up mammogram, they said not to get dressed yet because they may want to do an ultrasound. They did.

They scheduled me right then for two biopsies. I was reassured when they said not to worry - that the calcifications meant that if it was anything, it would be pre-cancerous only. They saw four spots and only wanted to biopsy two and if they showed anything, they'd biopsy the other two. Even that reassured me - if they suspected anything serious, they would've done it all at once, right?

One biopsy was ultrasound-guided and turned out to be .4 LCIS, and the other was mammogram-guided and turned out to be 1.1 cm ILC. I'm scheduled for the other two biopsies next week (one calcification measures 1.1 cm, the other .4 cm).

So now I'm trying to wrap my brain around this and learn as much as I can. I do better dealing with things if I research and talk to other knowledgeable people who've been through what I'm going through. And so here I am.

Please tell me if I'm misunderstanding what I've been reading:

1. ILC is difficult to see via ultrasound and mammograms, and the size of the affected areas are probably larger.

2. MRI is a better diagnostic tool for ILC than ultrasound and mammograms.

3. ILC is slow to spread, but since it's so hard to detect, and is more linear, it often covers a wider area.

4. I will make it through this (virtual hugs are very welcome)

Journey

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Comments

  • Lab-girl
    Lab-girl Member Posts: 25
    edited September 2016

    Hi Journey,

    Welcome to the group. Yes, ILC is sneaky and I think you are generally right about your statements above. I had IDC detected first (luckily, I guess) but the ILC only showed up on MRI. I had to get a mastectomy because I had one 1.8 cm tumor and one .9 cm tumor plus LCIS and DCIS. A mess. I'm 44 and did have some family history. Luckily I had been getting screened for 4 years. I did not have any palpable lumps but also had a feeling that there was something going on. I also handle situations like this if I have more information so I have been reading as much as I can, perhaps too much! I am anxious to hear anything from the ILC Symposium at the end of the month at U of Pittsburgh (I'm sure you've seen that thread). There will be members attending and reporting back.Hang in there and know that we are here for you! Hugs! G

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  • MyJourneys
    MyJourneys Member Posts: 143
    edited September 2016

    Thank you so much for the insight and the hugs! I'll have more to report on Friday (if the results of the biopsies are in), and will have more questions then, I'm sure.

    Journey

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited September 2016

    Your points above are exactly correct, Journey. ILC, post meno dx, also responds better to an AI (aromatase inhibitor) than tamoxifen. And even though ILC is the second most common bc after IDC, it's treated pretty much the same way, which many of us are not comfortable with since it is a different subtype. But that's what most of us get.

    Hugs,

    Claire in AZ


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  • edwards750
    edwards750 Member Posts: 3,761
    edited September 2016

    Definitely yes to #4. Also, my ONC told me that even though I do have a family history the majority of BC cases they see are not ones with a family history. My mother, sister and I all had and have BC.

    My sister and I have had annual mammos for years. I am 5 years out; she is 4. My mother passed away 10 years ago but not from BC.

    Good thing you had that feeling. Most people I know who have BC didn't have symptoms either. In fact I didn't. Mammo found it. BTW my tech said the same thing to me - you are fine. Not. She is not supposed to say anything plus she isn't qualified to.

    Good luck!

    Diane

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  • Licata519
    Licata519 Member Posts: 57
    edited September 2016

    Hello MyJourneys,

    You sound to be about a week behind me in the roller coaster ride I call my new normal. I feel like I've read so much I want to tell the doctors what to do. I was diagnosed after a routine mammogram. I'm still waiting on surgery too find out what is the truth because even after mammogram, 3D mammogram, ultrasound, and MRI, today I'm convinced my entire breast is riddled and needs to come off. Yesterday I felt I didn't even need chemo.

    These boards help because everyone has their own truth and shares it as we find out what ours are.

    I'm hoping to find out the answer to 4. Along with you. Good luck.


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