First International ILC Symposium | Sept 2016 | Pittsburgh, PA

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  • Warrior50
    Warrior50 Member Posts: 94
    edited October 2016

    I don't come here very often any more but now wish I would have so I would have seen this thread. I am very interested in the findings and future symposiums and Boston in 2018 sounds interesting. I had many mammograms and even biopsies that didn't catch my ILC. I also had a prophylactic mastectomy with my reconstruction that my surgeon strongly recommended because against and they found both LCIS and tubular BC.

    Thank you to the people who put this together and are sharing this information with us!

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  • gwbengtson
    gwbengtson Member Posts: 1
    edited October 2016

    Hi, I'm new here. My wife was diagnosed with ILC in June of 2015. We just celebrated our 25th wedding anniversary on 9/28! We had to miss the Pittsburgh ILC Symposium because she was having a procedure done in Seattle at the time (not the way one expects to spend the Silver Anniversary...). Anyway, does anyone know how we might get a copy of the proceedings of the Symposium? Is there a syllabus, or a collection of Power Points? We're eager to learn. THANKS!

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

    Hi gwbengtson. Welcome to Breastcancer.org, and congratulations on your wedding anniversary!

    Sorry we can't really help with your question. We are just bumping your thread so hopefully someone can.

    Best wishes,

    The Mods

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  • lulud471
    lulud471 Member Posts: 89
    edited October 2016

    My undrrstanding is that they are waiting for permission(s) to distribute the info from the symposium.

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  • hmh23
    hmh23 Member Posts: 306
    edited November 2016

    We are trying to get Lobular breast cancer on the agenda at the Dr Susan Love 9th Annual Symposium on Breast. Would you kindly send them a request to put it on the agenda? Its important to keep the dialogue goind. Thx Heather

    https://www.drsusanloveresearch.org/international-...



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  • JohnSmith
    JohnSmith Member Posts: 651
    edited January 2017

    Jan 2017 UPDATE:
    For those that didn't attend the first ever international ILC Symposium, you'll have an opportunity to hear from two ILC medical experts discussing highlights from the meeting in a free webinar on: Monday, Jan. 30th, 2017 4-5pm EST.

    To participate, please register here: https://attendee.gotowebinar.com/register/6547859304037292545

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  • bc101
    bc101 Member Posts: 1,108
    edited January 2017

    John,

    Thanks for the update. Will this session be recorded? I'm interested in hearing what they have to say, but can't make that time. Also, are there any materials or reports available from the symposium?

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  • JohnSmith
    JohnSmith Member Posts: 651
    edited January 2017

    Yes, I confirmed that this ILC webinar will be recorded, archived and available for future viewing if you're unable to watch on Monday, Jan 30th.
    I'll provide a link when it becomes available.


    In terms of last years ILC Symposium, the University of Pittsburgh was kind enough to establish a permanent website for the ILC meeting:
    https://upci.upmc.edu/wcrc/ilcsymposium-info.cfm
    The website contains Abstracts and Slide presentations from the conference. For simplicity, I'll post the Slide presentations here:
    2016 ILC SYMPOSIUM - PRESENTATION SLIDES: https://upci.upmc.edu/wcrc/retreat/pdf/2016-ilc-book.pdf
    (Note: This is a large 370+ page pdf file, which takes a while to completely open. You can open and read the contents or downloaded it as a pdf file to your computer for reference).

    You can also read a summary of the ILC meeting written by the BCRF (Breast Cancer Research Foundation) here:
    https://www.bcrfcure.org/blog/invasive-lobular-breast-cancer-second-most-common-form-invasive-breast-cancer-understudied

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  • MRock
    MRock Member Posts: 49
    edited January 2017

    Thanks thanks thanks as always to John for keeping us updated.

    BTW, I found the 370 page pdf file of slides here, in case any of you are having trouble finding it:

    https://upci.upmc.edu/wcrc/pdfs/slides.pdf


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  • Numb
    Numb Member Posts: 432
    edited February 2017

    Does anyone know if there were any new developments at the latest symposium, any good news I mean.


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  • Anonymous
    Anonymous Member Posts: 1,376
    edited February 2017

    Good news would be nice; I'd like to hear it too :)

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  • Kathy044
    Kathy044 Member Posts: 433
    edited February 2017

    A copy of the Symposium Hightlights Webinar is online for viewing for those who missed it.

    https://www.sharecancersupport.org/vdobreast-cance...

    The good news for me seven years out was there is no new bad news. The second part on the clinical "features" and misconception was interesting. The long term prognosis with lx vs mx is the same.for example, so is the long term benefit (or not) of pre surgery MRI. My Cancer was detected on a screening mammogram, not all ILC presents the same,

    Kathy

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  • WndrWoman
    WndrWoman Member Posts: 333
    edited April 2017

    I know this is quite a ways off but I was wondering if dates have been set for the 2nd symposium in Boston in September 2018. I would like to attend so I want to block out the dates. Thanks.

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  • Lexicoe
    Lexicoe Member Posts: 66
    edited April 2017

    Same here. I tried emailing someone a few weeks ago to get the updates for the ILCRAN network organization the symposium website mentioned, because I want to get involved with efforts to get more attention on ILC, but I've heard nothing back.

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  • Hipline
    Hipline Member Posts: 195
    edited April 2017

    I am on the steering committee for the advocates who came out of that symposium. Please PM me and I will keep you in the loop of getting involved. No firm date for Boston 2018 but I will make sure it's posted as soon as it's locked. We have a group call late May and I'll get an update. Thank you! Lori

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  • hlya
    hlya Member Posts: 484
    edited April 2017

    Sorry what is "ILC Resistance"?

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  • Lexicoe
    Lexicoe Member Posts: 66
    edited April 2017

    Could it be the early findings that some women with ILC may have a resistance to Tamoxifen that you're referring too?

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  • Laniem
    Laniem Member Posts: 5
    edited June 2017

    Lori, I am interested in attending the ILC symposium in 2018 and to become a patient advocate. Is there a mailing list I can be added to so I can get the dates for it?

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  • Hipline
    Hipline Member Posts: 195
    edited July 2017

    Hi Lanie

    We still don't have dates for the Symposium but I am speaking with one of the local advocates in a few weeks and will get an update. I promise to post here as well as start a new thread when we have more information. Thanks!

    Lori

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  • Seattle_questions
    Seattle_questions Member Posts: 25
    edited July 2017

    We're getting closer to having an up and running website for the Lobular Breast Cancer Alliance! See the page below and enter your email to get updated when it is ready!

    http://lobularbreastcancer.org/

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  • WndrWoman
    WndrWoman Member Posts: 333
    edited July 2017

    Seattle - Congrats to you and all involved. This will be so helpful.

    Holding off plans for next fall in hopes of participating in the 2nd ILC Conference. Eager to know the dates....

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  • temmi325
    temmi325 Member Posts: 1
    edited August 2017

    I am also a DES daughter who has been diagnosed with ILC (13 separate tumors in left breast, each less than 1cm; negative nodes). My research into DES-ILC relationship shows that studies currently support a connection with IDC, but not ILC (there weren't enough lobular cancers in the questionnaire responses to show a meaningful relationship--only 2 in the DES group vs 1 in the non-DES group), but that's was in 2006! Nothing more recent on follow up of that overall DES cohort.

    Would any of you with ILC who KNOW you a DES daughter kindly email me. With your permission, I'd like to create an informal "registry" to try to have someone investigate any statistical significance between in utero DES exposure and ILC.


    Thank you!!

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  • Seattle_questions
    Seattle_questions Member Posts: 25
    edited August 2017

    Registration is open for the Northwest Mestastatic BC conference September 22 and 23 in Seattle!

    Join us for the 2nd Annual Northwest Metastatic Breast Cancer Conference: Living Well. Living Longer - get the most current information on treatments, research trials, patient support and national issues for metastatic/stage IV breast cancer (MBC). Two specific breakout sessions with cutting age information about lobular breast cancer!

    September 22-23, 2017 | Seattle, Washington

    Amazon Meeting Center – 2031 7th Ave, Seattle, WA 98121

    Lobular breast disease is strongly featured on the agenda for two hour long breakout sessions on Saturday the 23rd. Dr. Steffi Oesterreich, lobluar researcher who chaired the First International Invasive Lobular Breast Cancer Symposium hosted by the University of Pittsburg, is coming to present and we will have a Seattle medical oncologist Dr. Hannah Linden with experience treating lobular mets presenting as well. Saturday programming is intended for people with metastatic disease and their caregivers. If you are interested in attending and do not have metastatic disease contact us and we'll see what we can do.

    http://komenpugetsound.org/nwmbcc/

    Friday, September 22nd

    We'll focus on "breast cancer rehab" with sessions on integrative care, inflammation and disease and nutrition as medicine.

    Saturday, September 23rd

    We'll cover the latest news in metastatic/stage IV breast cancer and bring leading researchers and doctors in our area together with national experts to learn about treatment advances, clinical trials and national advocacy issues for MBC.

    Thanks to the generous support of our sponsors attendance is free/registration required.

    For more information and to register: http://komenpugetsound.org/nwmbcc/

    Travel scholarships are available, first-come, first-serve. To be eligible you must live outside a 75-mile radius of the venue. Email nwmetsconf@pskomen.org to learn more.

    The Northwest Metastatic Breast Cancer Conference is supported by Susan G. Komen Puget Sound in partnership with Amazon Web Services, Swedish Cancer Institute, Eisai, Pfizer Oncology, Cascadian Therapeutics and Seattle Cancer Care Alliance.


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  • Hipline
    Hipline Member Posts: 195
    edited September 2017

    The Northwest Metastatic Breast Cancer Conference went very well - over 350 registrants and the entire conference was live streamed. The Lobular breakout sessions were well received, with LBCA steering committee members attending and facilitating the Lobular sessions and facilitating LBCA outreach. Dr's Steffi Oesterreich and Hannah Linden had some really helpful illustrations and ways of explaining ILC that were accessible to patients with many levels of knowledge and did a great job handling the tremendous number of clinical questions.

    You can view sessions on the Susan B. Komen Puget Sound Facebook page. https://www.facebook.com/pg/KomenPugetSound/videos...

    You can view Lobular Breast Cancer 101: Fundamentals from the Northwest Metastatic Breast Cancer conference and the second presentation in the series: Lobular Breast Cancer 102: Metastasis and Clinical as well as other presentation on Metastatic Breast Cancer from the two days.

    A video of both lobular presentations will be available in a few days and will be linked to www.lobularbreastcancer.org


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  • WndrWoman
    WndrWoman Member Posts: 333
    edited September 2017

    Thanks so much for all these reports and postings.

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  • WndrWoman
    WndrWoman Member Posts: 333
    edited October 2017

    Have I missed an announcement on the 2nd conference or are there still no dates?

    Thanks

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  • Hipline
    Hipline Member Posts: 195
    edited November 2017

    We are very close to a date! Likely July 2018. I will post as soon as it is locked in. Thanks for your patience!


    In the meantime two of the 1st ILC presenters are doing a webinar tomorrow on ILC. Here are the details. Thanks!

    http://hosted.verticalresponse.com/1808367/3978e23d8c/TEST/TEST/

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  • WndrWoman
    WndrWoman Member Posts: 333
    edited January 2018

    Just checking as my July dance card is already filling up. Any word on the 2nd Symposium?

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  • Hipline
    Hipline Member Posts: 195
    edited January 2018

    There will likely be a gathering in July that tacks onto another meeting in Boston. But it will not be a full ILC Symposium like Pittsburgh was. Plans are to still try and organize something like that in the future.

    July should be a full day of learning about ILC and then some good patient advocate discussions. I will post as soon as details are available. Dates would be July 14 or 15. Thanks for your patience. We’re working to get firm commitments so everyone can plan. Thanks.

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  • WndrWoman
    WndrWoman Member Posts: 333
    edited January 2018

    Thanks for the update. I appreciate how complex it is to bring all the key people together.

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