Good educational Resource for Lobular Breast Cancer (ILC)

leighseattle
leighseattle Member Posts: 14
edited September 2019 in ILC (Invasive Lobular Carcinoma)

Hoping this resource can be helpful to many in this forum ...

The Lobular Breast Cancer Alliance (LBCA) is a newly formed non-profit organization of patient advocates working with a Scientific Advisory Board of researchers and doctors. Their website www.lobularbreastcancer.org has lots of educational materials including webinars and videos that are patient focused and answer many questions patients have about ILC. LBCA also works to advance research to better understand ILC and refine treatments.

www.lobularbreastcancer.org

Lobular Breast Cancer Alliance

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Comments

  • vlnrph
    vlnrph Member Posts: 1,632
    edited March 2018

    Just signed up for email news from LBCA - website looks good! Impressive roster of experts. Nice profiles of individuals help to personalize ILC and put a face on this less recognized condition. Thanks for the information.

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  • pastasmom
    pastasmom Member Posts: 1
    edited March 2018

    Thank you! Just dx.

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

    They may be getting away from classifying cancer by where it is found, I not sure if they find breast cancer in the lobes rather than ducts the label it as lobular. My pathology report they look at the features more than anything. I was dx ILC but on pathology one tumor was changed to ductal with lobular features. It is almost like a combination of location and features.

    What seems to be important is finding the right treatment not one size fits all.

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

    pastasmom -- welcome to Breastcancer.org!

    We are so sorry to hear of your diagnosis, but we're really glad you found us. You're sure to find our Community and incredible source of information, support, and advice. Please come back often, engage fully, and receive the support you need. We're all here for you!

    Looking forward to hearing more from you soon!

    --The Mods

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  • leighseattle
    leighseattle Member Posts: 14
    edited August 2019

    Bumping this up ... if you have been diagnosed with Lobular Breast Cancer, the LBCA website is a great resource to learn about lobular. LBCA is led by patient advocates with ILC working with a Scientific Advisory Board of Breast Cancer Researchers and Clinicians. There are several educational events coming up. https://lobularbreastcancer.org/

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  • Meow13
    Meow13 Member Posts: 4,859
    edited August 2019

    BCO member JohnSmith was up on alot of the most recent research, haven't heard from them in a while. Could pm.

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  • purple-flower
    purple-flower Member Posts: 111
    edited August 2019

    Hi everyone

    Sitting here in shock. Sad. Numb. Worried. And, then sometimes distracted for a few peaceful few minutes.

    Just diagnosed today w/ILC. Grade 1, and 1.6cm. ER & PR + and HER - so seems decent. But then everything I have (maniacally) read today about ILC is really scary - bilateral, recurrance after 5 years, mastectomy, chemo, hidden, tricky, etc.

    Sorry if I am being a total bummer on this site, as you all sound so strong and positive, but I feel weak, out of breath, and overwhelmed thinking of everything to come (including all of the great tips on paperwork, bills, etc.). I have a surgery consult tomorrow I guess to talk more about options but I am also not feeling well today (cough, low fever,etc.) so of course that adds to my worry. And then I am supposed to host 25 people at a lodge the mountains with my kids, other families, etc. I don't know how I will get through it, My poor kids. :-(

    I'm sure I will have lot of questions to come and I really appreciate all of the wisdom here. But today I am just feeling lonely and scared.

    Thanks for listening.

    PF



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  • Moderators
    Moderators Member Posts: 25,912
    edited August 2019

    Hi there, purple-flower. We know it's hard, but you are not alone! We're so sorry for what brings you here, but you've come to the right place for support, encouragement, and information as you begin down this road. We're all here for you, every step of the way.

    The Mods

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  • Trying2staypositive
    Trying2staypositive Member Posts: 119
    edited August 2019

    Hi, purpleflower, I have a similar dx of ILC except Grade 2 and appears a little smaller but w ILC it is hard to measure on imaging. I have surgery next month. So scary I know! All the waiting is the worst. For me Im pretty worried about the sentinel lymph node biopsy leading to possibly removing a ton of nodes as well. All you feel is normal. You will have good and bad days. The more of a plan you have the better you feel, at least as best as you can under these circumstances. Hugs 💗
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  • purple-flower
    purple-flower Member Posts: 111
    edited August 2019

    Hi Trying2staypositve

    How are you doing? Seems like we are in similar situations and time frames, although you are ahead w/surgery scheduled and all. If you don't mind me asking (and maybe you already said but I'm not tracking) what surgery have you decided on, and how are you feeling about it? When is your date? (probably coming up?) It looks like BMX w/reconstruction in my future. The multi-disciplinary tumor board meets today to review all new cases, treatment plan, etc. so interested to hear if they agree etc. Personally worried about the implants and also if chemo is next. But not there yet. I would like an MRI so I have better picture what facing, but they haven't agreed to that yet. Well - keep staying positive!

    PF

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  • Mjvandy621
    Mjvandy621 Member Posts: 1
    edited September 2019

    Hi PF. I was just diagnosed with ILC, Grade 1, 2,0cm. ER & PR + and HER -. My surgeon & oncologist are very optimistic and have recommended lumpectomy, radiation and hormone therapy. My surgery is set for 9/26 and I elected to have oncoplastic surgery on only the affected breast. It is important to feel confident in your team of doctors. My prayers to you and all of the ladies affected by this disease.

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  • Moderators
    Moderators Member Posts: 25,912
    edited September 2019

    Mjvandy - We just wanted to drop a line to welcome you to the Breastcancer.org Community and thank you for posting. We're sure you'll find a valuable network of support and information here! Good luck with surgery and recovery and please, come back to let us all know how you're doing!

    Sincerely,

    The Mods

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  • hlya
    hlya Member Posts: 484
    edited September 2019

    Where is this site located? in the States?

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  • ShetlandPony
    ShetlandPony Member Posts: 4,924
    edited September 2019

    LBCA was formed in the USA, and the doctors on their board are from various places in the USA and Europe. One of the trials they are following is in the UK. Of course the internet makes their info available everywhere.

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