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Topic: Good educational Resource for Lobular Breast Cancer (ILC)

Forum: ILC (Invasive Lobular Carcinoma) — Just diagnosed, in treatment, or finished treatment for ILC.

Posted on: Mar 20, 2018 02:07PM - edited Aug 5, 2019 12:08PM by leighseattle

leighseattle wrote:

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

Dx 10/25/2012, ILC, 2cm, Stage IIB, Grade 2, 1/17 nodes, ER+/PR+, HER2-
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Mar 28, 2018 06:05PM vlnrph wrote:

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.

IDC too! 🎻💊👪🐩 🇫🇮 🌹🦋 Rt MX+DIEP 4-2011; ALND 5-2011 d/t micromets; TC X 4; tamoxifen; lymphedema 9-2011; switch to letrozole 3-2014 for 1 yr; bone mets 8-2018: Zometa, rads to spine, Faslodex/Versenio Dx 3/7/2011, ILC, 2cm, Stage IIA, Grade 2, 1/25 nodes, ER+/PR+, HER2-
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Mar 29, 2018 02:42PM pastasmom wrote:

Thank you! Just dx.

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Mar 29, 2018 04:18PM Meow13 wrote:

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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Mar 29, 2018 04:32PM Moderators wrote:

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!

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Aug 5, 2019 12:08PM leighseattle wrote:

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/

Dx 10/25/2012, ILC, 2cm, Stage IIB, Grade 2, 1/17 nodes, ER+/PR+, HER2-
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Aug 5, 2019 11:02PM Meow13 wrote:

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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Aug 12, 2019 08:05PM purple-flower wrote:

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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Aug 12, 2019 11:45PM Moderators wrote:

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.

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Aug 13, 2019 09:13PM Trying2staypositive wrote:

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 💗
Dx 7/15/2019, ILC, Left, Grade 2, ER+/PR+, HER2- Surgery 9/10/2019 Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement
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Aug 20, 2019 06:00PM purple-flower wrote:

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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Sep 9, 2019 09:55PM Mjvandy621 wrote:

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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Sep 10, 2019 06:34AM Moderators wrote:

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!

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Sep 13, 2019 03:03AM hlya wrote:

Where is this site located? in the States?

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Sep 13, 2019 02:10PM - edited Sep 13, 2019 02:14PM by ShetlandPony

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.

2011 Stage I ILC 1.5cm grade1 ITCs sn Lumpectomy,radiation,tamoxifen. 2014 Stage IV ILC mets breast,liver. TaxolNEAD. Ibrance+letrozole 2yrs. Fas+afinitor nope. XelodaNEAD 2yrs. Eribulin,Doxil nope. SUMMIT FaslodexHerceptinNeratinib for Her2mut NEAD

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