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Topic: An Evening of Learning About Lobular!

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

Posted on: Jul 18, 2019 08:49PM - edited Aug 5, 2019 12:41PM by Huffpuff

Huffpuff wrote:

Come to the Cleveland Clinic for a complimentary dinner and expert panel discussion, including Q&A, or go on webcast and be part of the live event. Register for either by clicking on this link:

https://lobularbreastcancer.org/cleveland2019/

Click on blue box which says REGISTER. Important information about Lobular Breast Cancer! For a great rate at a nearby hotel, click on this link for the Tudor Arms Doubletree, especially for Lobular women: https://secure3.hilton.com/en_US/dt/reservation/book.htm?execution=e1s1



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Jul 18, 2019 11:27PM ShetlandPony wrote:

Thanks, Huffpuff.

2011 Stage I ILC ER+PR+ Her2- 1.5 cm grade 1, ITCs sn . Lumpectomy, radiation, tamoxifen. 2014 Stage IV ILC ER+PR+Her2- grade 2, mets to breast , liver. Taxol NEAD. 2015,2016 Ibrance+letrozole. 2017 Faslodex+Afnitor; Xeloda. 2018,2019 Xeloda NEAD
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Jul 19, 2019 03:14PM Mavericksmom wrote:

THANK YOU! I registered

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Jul 19, 2019 05:18PM Huffpuff wrote:

Great that you can come! If you need to spend Thursday night, there might be a few rooms left at a good rate at the Intercontinental. I just arranged a block of rooms at the Tudor Arms Doubletree. Mention the Lobular Breast Cancer Alliance to get the good rate.

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Jul 19, 2019 06:43PM - edited Sep 29, 2019 09:00PM by Mavericksmom

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Jul 19, 2019 08:03PM Huffpuff wrote:

I hope all Lobular women can at least register for the webinar! And if anyone can make a trip to Cleveland please come to the dinner in person! Hotel information listed above.

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Jul 20, 2019 05:03PM - edited Sep 29, 2019 09:00PM by Mavericksmom

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Jul 22, 2019 01:05PM - edited Sep 29, 2019 09:00PM by Mavericksmom

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Jul 22, 2019 06:51PM ShetlandPony wrote:

Do you know if webinar attendees will be able to submit questions to the speakers?

2011 Stage I ILC ER+PR+ Her2- 1.5 cm grade 1, ITCs sn . Lumpectomy, radiation, tamoxifen. 2014 Stage IV ILC ER+PR+Her2- grade 2, mets to breast , liver. Taxol NEAD. 2015,2016 Ibrance+letrozole. 2017 Faslodex+Afnitor; Xeloda. 2018,2019 Xeloda NEAD
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Jul 22, 2019 08:26PM Huffpuff wrote:

Yes they will. I think the technology they are using allows webinar participants to text or email in questions.

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Jul 22, 2019 08:30PM ShetlandPony wrote:

That’s great.

2011 Stage I ILC ER+PR+ Her2- 1.5 cm grade 1, ITCs sn . Lumpectomy, radiation, tamoxifen. 2014 Stage IV ILC ER+PR+Her2- grade 2, mets to breast , liver. Taxol NEAD. 2015,2016 Ibrance+letrozole. 2017 Faslodex+Afnitor; Xeloda. 2018,2019 Xeloda NEAD
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Jul 23, 2019 06:32AM arizonaboundgal wrote:

This is great. I signed up for the webinar. Thanks, Huff.

Enjoy every sandwich--Warren Zevon
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Jul 23, 2019 08:01AM KayaRose wrote:

Thanks Huffpuff. I just signed up for the webinar and am really looking forward to it.

Dx 9/4/2014, ILC, Left, 5cm, Stage IIIA, 1/14 nodes, ER+/PR+, HER2- Chemotherapy 9/23/2014 AC + T (Taxol) Surgery 3/1/2015 Lymph node removal: Underarm/Axillary; Mastectomy: Left Radiation Therapy 3/30/2015 Whole-breast: Breast, Lymph nodes Hormonal Therapy 4/1/2015 Arimidex (anastrozole) Surgery 7/16/2017 Prophylactic mastectomy: Right
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Jul 23, 2019 09:10AM HersheyKiss wrote:

Will the presentation be recorded and posted online for those of us who are unable to attend?

Dx 3/1/2017, ILC, Left, 2cm, Grade 1, 3/16 nodes, ER+/PR+, HER2-
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Jul 23, 2019 12:18PM Huffpuff wrote:

Yes we are hoping it will be recorded and then posted on LBCA website.



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Aug 5, 2019 12:26PM - edited Sep 29, 2019 09:00PM by Mavericksmom

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Aug 5, 2019 01:01PM Dani444 wrote:

I hope it is recorded! I will be working during that time but I am very interested in it. Thank you for sharing this

DX @ 46, premenopausal, mammaprint low risk Dx 8/21/2018, LCIS/ILC, Right, 4cm, Stage IB, Grade 2, 2/3 nodes, ER+/PR+, HER2- (IHC) Surgery 10/24/2018 Lymph node removal: Sentinel; Mastectomy: Right; Reconstruction (right): Silicone implant Radiation Therapy 12/5/2018 Lymph nodes, Chest wall Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Aug 22, 2019 06:52PM - edited Aug 22, 2019 08:10PM by ShetlandPony

This Post was deleted by ShetlandPony.
2011 Stage I ILC ER+PR+ Her2- 1.5 cm grade 1, ITCs sn . Lumpectomy, radiation, tamoxifen. 2014 Stage IV ILC ER+PR+Her2- grade 2, mets to breast , liver. Taxol NEAD. 2015,2016 Ibrance+letrozole. 2017 Faslodex+Afnitor; Xeloda. 2018,2019 Xeloda NEAD
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Aug 23, 2019 07:45AM - edited Aug 23, 2019 06:51PM by Mavericksmom

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Aug 23, 2019 10:05AM OnTarget wrote:

I thought it was interesting, but I think I would have preferred a format where they delivered lobular specific education to us from the specific experts first, and then the second part could have been Q&A. I do agree that the questions should be moderated because otherwise you get a bunch of questions about cording and LE, which while they are valid questions, have nothing to do specifically with lobular.

I would have liked to have started with a synopsis of what lobular is and what makes it different. I liked that the pathologist did this, but they didn't face the camera on the slides she was showing, so we were unable to see that.

I would have liked to seen some slides on the lobular research landscape and what is specifically known about lobular and how it is different. Some in-depth analysis of chemo and lobular would have been nice, including the studies which cause their conclusions. I'd specifically like to know if the grade has an effect on the chemo outcomes in the studies. A slide on how it metastasizes would be good, and I appreciate that that was covered during the talk.

I also think that whatever people choose to wear on their heads is fine, and I would hope that people on this forum would be particularly unjudgy about it.

Diagnosed at 42, Oncotype score 16, ITC in one node- considered node negative Dx 4/8/2019, ILC, Left, 3cm, Stage IB, Grade 2, 0/3 nodes, ER+/PR+, HER2- Dx 4/23/2019, ILC, Right, <1cm, Stage IA, Grade 2, 0/2 nodes, ER+/PR+, HER2- Surgery 5/15/2019 Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Hormonal Therapy 6/13/2019 Zoladex (goserelin) Chemotherapy 8/5/2019 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Surgery 11/5/2019 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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Aug 23, 2019 06:04PM Whatjusthappened wrote:

I missed the first hour of it but didn't really learn anything new. I was also disappointed in the questions- with such limited time and so many questions, I think they should have kept the questions specific to lobular. I was particularly interested in information on metastasis patterns and recommended screenings, but didn't hear anything about that. Was that covered during the first hour or so?

BRCA2 positive; multifocal LCIS/ILC found after sugery Dx 2/1/2019, LCIS/ILC, Right, 4cm, Stage IB, Grade 2, 1/3 nodes, ER+/PR+, HER2- (FISH) Surgery 2/22/2019 Mastectomy: Right; Prophylactic mastectomy: Left Radiation Therapy 4/23/2019 External: Lymph nodes, Chest wall Surgery 6/17/2019 Prophylactic ovary removal Hormonal Therapy Arimidex (anastrozole)
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Aug 23, 2019 09:31PM KBL wrote:

I too was a little disappointed that they took so long to answer each question. They didn’t get through very many. The introductions, although very nice, took the first 20 minutes. I appreciated the time all of the panel experts took out of their busy schedules. I did fill out the survey as well. Nobody really thinks about this, but I close caption for the hearing impaired. I was disappointed that the deaf and hard-of-hearing community was not able to join in because there was no captioning. I did write in the question section to please turn the camera on the slides. I wasn’t sure why they didn’t do that. I hope they can do another session soon. It probably could have gone another two hours with no problem.

Dx 5/3/2019, ILC, Stage IV, metastasized to other, ER+/PR+, HER2- (IHC) Targeted Therapy 6/24/2019 Ibrance (palbociclib) Hormonal Therapy 6/24/2019 Femara (letrozole)
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Aug 24, 2019 10:46AM Huffpuff wrote:

Thanks to everyone who attended! I hope all of you have filled out the Cleveland Clinic survey after the event. This was a new format and there is a big learning curve for all. The evening was not meant to be a lecture, but a patient -driven forum where lobular women could ask questions of the many different medical specialists we encounter throughout the entire breast cancer journey. If the "questions were all over the place," it just reflected the concerns of the lobular women participating. The software prioritized the questions by popularity so the most "liked" questions went to the top of the list. If your concerns were not addressed, I encourage you to go the the LBCA website, lobularbreastcancer.org, and click on the treasure trove of information on many of the different links, especially the Resource Library.

Specifically, a more didactic webinar given by one expert was recorded here

https://lobularbreastcancer.org/lbca-share-treatme...

There is a Roundtable discussion on ILC on Aug 28

https://lobularbreastcancer.org/lbca-share-roundta...

There will be a Lunch and Learn about ILC at the Northwest Metastatic Breast Cancer Conference

https://lobularbreastcancer.org/nwmbcc2019/

And please put the 2nd International Lobular Breast Cancer Conference on your calendar for May 14-6, 2020 in Pittsburgh, Ohio

https://lobularbreastcancer.org/2nd-ilc-symposium/

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Aug 24, 2019 02:54PM - edited Aug 24, 2019 02:54PM by KBL

Thank you for all of the great resources.

Dx 5/3/2019, ILC, Stage IV, metastasized to other, ER+/PR+, HER2- (IHC) Targeted Therapy 6/24/2019 Ibrance (palbociclib) Hormonal Therapy 6/24/2019 Femara (letrozole)
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Aug 26, 2019 11:13AM Hipline wrote:

Thanks Huffpuff.

Just to add, the plan is to have a full day (May 14) devoted to patient advocates at the 2020 conference in Pittsburgh. This would include educational sessions given by MD's or PhD's on the biology of ILC, ILC related research, clinical updates for ILC and time to ask questions and mingle with presenters as well as researchers. There will also be presentations from experienced advocates on what advocacy is, the role of social media and how the LBCA is working to move the needle forward on research and how advocates can help.

The Cleveland Clinic event is an example of how one advocate can grow awareness and she did and she made that evening happen. One evening can't be everything for all people but there was nothing before this and we are so grateful for that local advocate making things happen and getting representatives of the ILC advocacy community invited and I hope she has inspired more of us to do the same. We are our own best advocates.

Pleomorphic ILC, Onco DX score 16 Dx 11/16/2010, ILC, Left, 2cm, Stage IIA, Grade 2, 0/2 nodes, ER+/PR+, HER2- Hormonal Therapy 1/31/2011 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Hormonal Therapy 1/23/2014 Femara (letrozole) Surgery 12/6/2018 Mastectomy: Right; Reconstruction (right): Silicone implant
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Aug 27, 2019 12:12PM Staceybee wrote:

Does anybody know anything about the potential availability of the Australian LobSig test that was mentioned during the Cleveland event? One of the panelists talked about the test, brought to his attention by a patient, and then said don't ask for it because you can't get it. I just skimmed the study on it - kind of concerning to me because they suggest that the Oncotype is insufficient for ILC.

"The authors concluded that the molecular signature, LobSig, which captures the peculiar genomic landscape of ILC tumors, and together with clinico-pathology information, provides a robust mechanism for prognostication in ILC. Assessing a 10-year follow-up period, LobSig outperformed other similar commercial analyses. LobSig status predicted outcome with 94.6% accuracy amongst cases classified as 'moderate-risk'. "

Nice study and paper, but what are the next steps to put this into practice?

1/2 SN w 1mm "micromet"; lots of LCIS found in surgery; oncotype=13; age 52 at dx Dx 4/24/2018, ILC, Right, 1cm, Stage IB, Grade 2, 1/2 nodes, ER+/PR+, HER2- (IHC) Surgery 5/22/2018 Lumpectomy: Right Radiation Therapy 7/10/2018 Whole-breast: Breast, Lymph nodes Hormonal Therapy 8/3/2018 Arimidex (anastrozole)
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Sep 27, 2019 04:47PM - edited Sep 29, 2019 08:29PM by Mavericksmom

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Oct 1, 2019 09:29PM Huffpuff wrote:

Here is a video of the Evening!

https://lobularbreastcancer.org/cleveland2019/

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