Just Diagnosed ILC at 38 weeks pregnant

jennaru123
jennaru123 Member Posts: 5
edited March 2020 in ILC (Invasive Lobular Carcinoma)

Hi Everyone,

I just found out 2 days ago that I have ILC in my right breast. I just turned 41 years old, have a 2 year old at home, and am 38 weeks pregnant. Its like I'm living one of those horrible talk shows where folks' stories are almost too bad to be real.

For me it was as if one morning I woke up and my right breast was hard with an inverted nipple. It seemed to happen so fast. At first my doctors and I thought it was related to the pregnancy - swelling, engorgement and inverted nipple - but we did an ultrasound and one core biopsy to be safe. ILC, ER+, HER2-, My family doc said that the hormones from pregnancy likely caused it to grow faster. I see a surgeon in a few days for a consult, if I'm not in active labour at the time. Surgery likely in April.

I've been trying to research and read through past posts but its difficult with so much other planning to do. I have pregnancy appointments and planning and have to plan for additional care to help with a newborn and toddler while I'm recovering from surgery and then who knows what else after that. My hubby is amazing but can only do so much. I'm planning for a long journey, I hope a successful one. I'm terrified of leaving my husband and two young children without a mother.

I guess I'm just reaching out for any help folks can give on where to start with limited time to read over stuff. What do I ask my surgeon? I have the list from the main board but a lot of doesn't seem applicable (I either already know it from the pathology report, or the doctor won't know it prior to surgery). What is the prognosis for ILC overall - some stuff I read is positive and other stuff very negative. I want to know what it is I'm facing, realistically. The whole "you will beat this! you'll be just fine!" from well meaning family members isn't particularly helpful when they (nor I) have any idea how serious this "thing" is that I'm supposed to beat. What are other key things to know about ILC from folks who have been there, done that, know what it is? Any key points are greatly appreciated!

Also to note, if its important - I'm located in Canada. A major city so there are a lot of options and leading experts around.

Thanks everyone. I'm already grateful to have found this group.


· Share on FacebookShare on Twitter

Comments

  • Moderators
    Moderators Member Posts: 25,912
    edited March 2020

    Dear jennaru12, we are really sorry for your diagnosis and for what you are going through, but we're glad that you reached out to our members, welcome! This wonderful Community is here to help with information (check the main Breastcancer.org site for info about Treatment for ILC and Being Diagnosed During Pregnancy) and there's always someone online who knows what you're feeling right now. As a suggestion, you may want to check or post also in the the 'Young With Breast Cancer' Forum, where you'll find other women your age under similar circumstances.

    We hope this helps. Please, let us know how everything goes, we're thinking of you!!

    The Mods


    · Share on FacebookShare on Twitter
  • FaithAndTrust
    FaithAndTrust Member Posts: 44
    edited March 2020

    dear Jennaru

    I am so sorry you find yourself here ...with a baby on the way and toddler at home here are some initial thoughts that might help you

    firstly you have made a great first move..this forum is wonderful full of knowledge wisdom experience and heart..you will not find better support.

    you have a bit if a journey ahead of you so you need to find a team that understand lobular..that you have faith in because when you do that you can relax somewhat knowing that you trust the medical care you are getting.

    try and do as much research as you can but most stuff you will learn along the way or on these boards.

    lobular tends to be slow and not aggressive so you can get thru this.

    please ask any specific questions you may have at this stage.. I will try to help you as much as I can.

    meantime I am sending you a blessing from ireland ☘

    · Share on FacebookShare on Twitter
  • jessie123
    jessie123 Member Posts: 532
    edited March 2020

    Jennaru --- I'm so sorry you're having to go through this--- especially being pregnant. My surgeon told me that my prognosis was good because the cancer had not spread to my lymph nodes and was not very large. Of course 2 cm is not small, but also not considered large. I think cancer prognosis also involves the cancer grade and recently I've read that a lower KI-67 score is good. I have a friend who had ILC when she was your age and she's fine now 25 years later. Estrogen positive is considered the be a good cancer to have so you're lucky about that. I read and read when I was diagnosed -- still do, but less often. The hardest decision for me was to decide between a mastectomy and lumpectomy. That is a question to ask your surgeon - he/she can tell you the pro's and con's. That really was a very hard decision. Because ILC is rare (only 10 to 15% of breast cancers) this ILC portion of the website doesn't have as many viewers so that is why it's taking time for you to get the answers to your questions. Don't worry they will be here soon and will have tons of good ideas for you.

    · Share on FacebookShare on Twitter
  • jennaru123
    jennaru123 Member Posts: 5
    edited March 2020

    Thank you so much. Your words really meant a lot. I was just having a bit of a breakdown, rare for me (must always be the strong one), and reading your message helped me to take a deep breath and get back to planning for the fight ahead.

    · Share on FacebookShare on Twitter
  • jennaru123
    jennaru123 Member Posts: 5
    edited March 2020

    Dear FaithandTrust and jessie123

    Thank you so much. Your words really meant a lot. I was just having a bit of a breakdown, rare for me (must always be the strong one), and reading your messages helped me to take a deep breath and get back to planning for the fight ahead.


    · Share on FacebookShare on Twitter
  • akmom
    akmom Member Posts: 272
    edited March 2020

    Sorry you have to be here, Jennaru. There is a thread for Canadians in British Columbia if you ever want to connect with people in your area who might be able to help with local information or support
    https://community.breastcancer.org/forum/55/topics/779734?page=97#idx_2910

    · Share on FacebookShare on Twitter

Categories