Newly diagnosed

Barnett2
Barnett2 Member Posts: 6
edited August 2016 in ILC (Invasive Lobular Carcinoma)

Had annual mammogram in July, didn't like what they saw on my left breast. Returned for mini mammogram and ultrasound. Radiologist said he couldn't tell with my dense breast tissue but still didn't like what he saw. Did biopsy last Wednesdy and yesterday was given the diagnosis of ILC. I am in shock but trying to educate myself before a breast MRI and initial consultation with surgeon Monday. Glad I found this group

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  • dtad
    dtad Member Posts: 2,323
    edited August 2016

    Hi there. So sorry you have to be here but welcome. I know you will find this forum both comforting and informative. We are all here for you. Please feel free to ask any questions and to private message me if you want to talk more details. Good luck...

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  • Moderators
    Moderators Member Posts: 25,912
    edited August 2016

    Hi Barnette,

    We too are so sorry you have to be here, but really glad you found us. You're sure to find this website and Community an incredible source of information, support, and advice. We know it's very overwhelming just after being diagnosed, but the more you learn about your diagnosis, the more confident you will be in your treatment decisions.

    There's surely going to be more members weighing in shortly with their support and advice. In the meantime, you may want to check out the main Breastcancer.org site's section on ILC for more information on diagnosis, treatment options, and follow up care.

    We hope this helps and please come back often to ask any questions you have and look for support. We're all here for you!

    --The Mods

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  • caretothepeople
    caretothepeople Member Posts: 6
    edited August 2016

    Welcome, Barnette. Others have already provided some great information to get you started. I wanted to add that Mayo Clinic has a guided for Preparing for an Appointment for ILC, which includes questions to ask the doctor. Penn Medicine also suggests these questions. I hope they are helpful. Please keep us posted on how you are doing.

    Questions About Your Cancer Team

    • What is your experience in treating people with ILC?
    • Who else will be on my treatment team?

    Questions About Diagnosis

    • What other diagnostic tests will I need?
    • What type of biopsy will be done?
    • Are cancer cells present anywhere else in my body?
    • What is the prognosis for relapse?
    • Will I develop cancer in my other breast?
    • Should I have genetic testing?

    Questions About Your Treatment

    • What are my treatment options?
    • Do I need treatment right away?
    • Where will I get my care?
    • What are the treatment side effects?
    • Long-term
    • Short-term
    • Are there any complications from treatment?
    • Will treatment for my cancer affect my ability to have children?
    • If so, are there fertility preservation options?
    • What are the expected outcomes from my treatment?
    • Am I eligible for a clinical trial?
    • Can I have reconstructive surgery?
    • What support resources are available to me?
    • Are there any complementary therapies I can do while receiving cancer treatment?
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  • Momine
    Momine Member Posts: 7,859
    edited August 2016

    Hi Barnett, I am almost an old-timer here, having been diagnosed 5 years ago. It is a steep learning curve, but you will get through it. Let us know what the surgeon says. Also, I would want an oncologist to consult before a treatment plan is made.

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  • Ware
    Ware Member Posts: 70
    edited August 2016

    Welcome to the club. I have also just started downthis road. I was diagnosed last month originally with stage 1 ilc. I chose bilateral mastectomy with no reconstruction. I am glad I made that choice. Turned out I had 4 positive nodes which put me at stage IIIa. I've not started treatment yet. We can go down that road together. Hang in there. We will overcome

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  • Momine
    Momine Member Posts: 7,859
    edited August 2016

    Ware, it is odd that with the nodes. I had two enlarged nodes, but nothing showed on any of the many different scans I had. On pathology I had 7 positive nodes. I have seen it several times with ILC.

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  • Ware
    Ware Member Posts: 70
    edited August 2016

    Every time I've gone to the docs I left with comforting thoughts only to return and receive less comforting information. First appt...feels like a cyst. Biopsy...feels like a cyst. Biopsy follow up...ilc stage 1 not believed to be in nodes. Mastectomy...3 positive nodes. Follow up from mastectomy...4 positive nodes stage IIIa. I had a pet scan 2 days ago...if it is anywhere else I'm not going back to doctors....just kidding. I know I have to and I know I need treatment but I sure would like to get a least one positive report.

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  • deewishes4
    deewishes4 Member Posts: 1
    edited August 2016

    I was diagnosed in July also....scared to death.....have surgery scheduled for the end of this month for a partial but I want to do a mastectomy but the doc is scared I won't heal well because I am diabetic....not sure what to do so I am going to see her again before surgery to discuss it.

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  • Ware
    Ware Member Posts: 70
    edited August 2016

    Deciding what to do is very hard. Maybe a second opinion would be best before surgery. Tough situation.

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  • Barnett2
    Barnett2 Member Posts: 6
    edited August 2016

    Thank you for the replies and information/guidance. Apologize for the delay in my reply. Had second opinion and both doctors say I'm stage 1 and no sign of it affecting the nodes. Thought long and hard about my options. Scheduled for lumpectomy on 9/6/16 followed by radiation and hormone therapy. Hope and pray they are right and I've made the right choice.

    Dx: 8/15/16 ILC Left, 1.5cm, stage 1, ER+/PR-, HER2-

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