First International ILC Symposium | Sept 2016 | Pittsburgh, PA

WndrWoman · September 2016

Shetland, I certainly respect your feelings and am glad you raised concerns about distribution of the booklet. I have a lot of faith in Heather's sensitivity and care in including us in the conference and will trust her judgment. Thanks to all who are working so hard on this conference.

JohnSmith · September 2016

Seven more sleeps.

sueinfl · September 2016

So excited!

My personal questions for which I hope to find answers are:

Is there someone with enough expertise to read my PET/CT scans from last month and last year and say with some certainty that there are no changes? I have no faith in the radiation pathologist the VA uses.

Is there a liquid biopsy reliable enough to establish whether I have cancer lurking somewhere and my full RNA and proteomic profile?

If NED, where is the best vaccine clinical trial for ILC?

If Stage IV, where is the best immunotherapy clinical trial for ILC?

Don't want much, do I?

"Shouldn't I have this? Shouldn't I have this? Shouldn't I have all of this and ..."

;-)

Strength and Peace,

Sue

JohnSmith · September 2016

Great questions Sue.

Three more sleeps. I'm more excited for this than my last tropical vacation.

jojo9999 · September 2016

I am curious to know how things went at the symposium...will anything about it be posted? Anyone ready to share what they learned?

Smurfette26 · October 2016

The following are tweets from the symposium:

Day 1:

.@oesterreichs- estrogen receptor function unique in ILC cells vs IDC cells. May correlate w endocrine resistance. #lobular2016

Knauer- potential AI resistance in lumA ILC, little tamoxifen benefit in LumB ILC. from abcsg-8 trial, retrospective study. #lobular2016

FoxA1 focal amplification in same tamoxifen resistant cells, putative driver of ER function #lobular2016

.@Prof_Riggins- XBP1 mutation ID'ed in tamoxifen resistant ILC cell line. Present in ~2% of ILC tumors, not in IDC. #lobular2016

Hillary Stires, PhD ‏@HillStirSci 1m1 minute ago

@Prof_Riggins representing @LombardiCancer at #lobular2016 discussing endocrine resistance in #ilc. #proudmentee

Blohmer- for pts with history of ILC, an ovarian met may appear to be a new ovarian primary tumor. Similar behavior. #lobular2016

Blohmer- pathologic complete response to neoadj chemo was NOT associated with better survival for ILC pts. #lobular2016

Blohmer- Peritoneal ILC mets retain ER/PR expression, Ki67 status unchanged v primary. Do mets remain endocrine-responsive? #lobular2016

Slingerland- two new cell lines of endocrine-resistant ILC. Derived from metastatic recurrences from ILC patients. #lobular2016

FDG-PET cannot dx an ILC patient as metastases-free. Mets are frequently not FDG-avid; ILC met sites (eg gut) difficult to see. #lobular2016

Lehmann - ILC may have a unique genetic phenotype related to epigenetic modification of DNA. #lobular2016

Chin- in RATHER study, mutational burden (>8 mutations) is associated with poorer outcomes. #lobular2016

HER2 & HER3 mut enriched in ILC (~9% total). Not often amplified when mutated, would not get anti-HER2. Mut = novel rx target. #lobular2016

Desmedt- over last two years, genomic data from ~1200 ILCs published.

Perou- Differential FOXA1 (ILC) vs GATA3 (IDC) mutations may provide insight in to estrogen receptor biology in ILC. #lobular2016

FDG-PET cannot dx an ILC patient as metastases-free. Mets are frequently not FDG-avid; ILC met sites (eg gut) difficult to see. #lobular2016

Matthew J. Sikora ‏@mjsikora 5h5 hours ago

Ulaner - #lobular #breastcancer less FDG-avid (ie less detectable by PET) than other breast cancers. Compounds imaging issues. #lobular2016

MRI powerful in detecting spread of ILC (multifocal disease) and local invasion, but recommendations for use are mixed. #lobular2016

Differential between ALH and LCIS is arbitrary #lobular2016

No patients with lobular features should be getting breast conserving surgery without understanding the risks #lobular2016

J.Pang- IDC with #lobular features are Ecad-positive but behave like ILC (more LN+, more HR+, poorer DFS, more re-excision). #lobular2016

Rakha - ILC recurrence persists >10yr post-treatment. Grade 3 ILC rare, but assoc w higher recurrence/metastasis. #lobular2016

.@DAVIDJDABBSMD - ILC as a subtype of #breastcancer also represents another spectrum of diseases with unique biology. #lobular2016

ILC is a heterogeneous disease #lobular2016

Breast cancer rates higher in families with CDH1 mutations #lobular2016

Gastric cancer in families with CDH1 mutation hard to detect with endoscopy

Benusiglio- CDH1 mut linked w hereditary #lobular #breastcancer; may not necessarily present parallel to gastric cancer. #lobular2016

Dr. Christopher Li from @fredhutch shows that there is a strong risk of ILC with HRT use and alcohol consumption. #lobular2016 #ilc #bcsm

C. Li- ILC incidence increased from ~1970-90, but has decreased since wide HRT use ceased. Consistent with >90% of ILC ER-pos. #lobular2016

E. Sawyer- BRCA2, PALB2, CHK2 mut confer ILC risk. Meta study IDs novel SNPs, including var in FGFR2; SNP on 7q34 ILC specific. #lobular2016

Worth noting that Ecad/p53 ILC mouse model took >4 years to develop. Progress in research never as fast as we'd like. #lobular2016

Ecad/p53 model has a few implicit biases, but clearly representative of ILC biology - powerful model to test rx moving forward. #lobular2016

Chek2 I157T associated with 4-fold increase in risk for ILC #lobular2016

Ecad loss also leads to apoptosis-defect; ILC cells cannot induce BMF, which normally causes death upon deattachment #lobular2016

Ecad loss in ILC --> cytosolic p120 = blocked MRIP and active Rock signaling. Required survival signaling for ILC cells. #lobular2016

p120 catenin is a biomarker for ILC #lobular2016

Mouse model with ecad/p53 DKO produces ILC tumors (ER-neg), but histo equal to human. Cells resist anoikis to survive. #lobular2016

Mouse model with p53 & E-cadherin knocked out creates a model of lobular breast cancer #lobular2016

Patrick Derksen developed first mouse model of lobular breast cancer

Smurfette26 · October 2016

Day 2:

pLCIS is molecularly proliferative (consistent with biomarkers) and may be more related to Luminal B #breastcancer #lobular2016

From @Otto_DFCI ILC as unique entity is as common as multiple myeloma, brain tumors #lobular2016 #bcsm

.@Otto_DFCI - In retro study of BIG1-98, ILC pts had reduced benefit from Tam vs AI. Any AI (incl switching) better v tam only. #lobular2016

@Otto_DFCI- Highlights pt case of met progression- need to learn about evolution during rx resistance, and how unique in ILC. #lobular2016

@Otto_DFCI from @DanaFarber suggests we need to determine which women with ILC would benefit from chemotherapy. #lobular2016 #bcsm

Gierach- LCIS/ILC detected by mammography associated with local dense breast. May suggest role of tumor microenvironment. #lobular2016

.@Kev_Levine- Late age for first full term pregnancy (>30) is associated with increased risk of ILC specifically. #lobular2016

Age/pregnancy related ILC risk may relate to normal breast dev - prolactin signaling is putative driver for cancer phenotype. #lobular2016

Prolactin/lactation sig typically assoc with ER-negative, but activated in ER+ ILC. May suggest cell of origin, rx targets. #lobular2016

O'Connor- high expr of BRD3 ('chromatin reader' txn factor) assoc w poor outcome in ILC pts. BRDinhib JQ1 downregs ER in cells. #lobular2016

Regulation of apoptotic cell death machinery identifies cell line response to BH3 therapeutics (Bcl-2/xL mimetics). #lobular2016

Simpson- 8p12 & 11q13 (CCND1 and FGFR1) chromosomal amps recurrent in ILC. ~200 Amp/del genes prognostic for outcomes. #lobular2016

Drugs targeting proteins (Bcl2, etc) involved in apoptosis being investigated preclinically for potential as treatment for ILC #lobular2016

LobSig gene expr signature separates good/bad outcomes for Grade 2 ILC pts, may ID poor outcomes w/i 5 years of dx. #lobular2016

.@hmhillier23- Announce start of ILC Pt Advocacy Network. Priority to get ILC officially recog as breast cancer subtype. #lobular2016

re: ILC advoc- help to establish best practice for dx protocol (imprv imaging and doc's awareness of difficulties). #lobular2016

re: ILC advoc- Advance education & awareness among public and med community for ILC. Re-teach from med students upward. #lobular2016

re: ILC advoc- Support global bank w ILC tissue. Advance ILC support in local areas, raise nat'l profile (NCI, Komen et al) #lobular2016

Dowsett- change in cell proliferation (Ki67) after just 2wk of endocrine rx correlates with relative long-term benefit from rx #lobular2016

Dowsett- In POETIC, ILC have equivalent decr in Ki67 as IDC, consistent with equivalent biological response to AI rx. #lobular2016

Dowsett- IDed tech issues w measuring gene exp from core biopsies, due to sample processing. Stress gene changes are artifacts. #lobular2016

Upcoming POETIC-2 trial will measure on-rx bio response to AI and pair a 2nd rx based on IDed resistance mechanisms. #lobular2016

Sotiriou- ILC have lower amt of infiltrating immune cells vs IDC (ER+). Decr in ILC w ERBB3 mut; inc w 8q24 loss, 7p21 gain. #lobular2016

Sotiriou- high % infiltrating tumor cells assoc with poorer outcomes in ILC (opposite as seen with TNBC). #lobular2016

Sotiriou- Assoc btw infiltrating immune cells and outcome in ER+ ILC, but not ER+ IDC #lobular2016

Golshan- LCIS is associated with >95% 20-year (twenty!) breast cancer specific survival. #lobular2016

Jacobsen- In BCK4 ILC cell line, progesterone blocks estrogen induced growth in culture, but enhances it when in vivo as tumor. #lobular2016

Jacobsen- Progesterone/PR has unique effects on function of ER in ILC vs what is seen in IDC models. #lobular2016

Jankowitz- Currently accruing trial to understand effects of endocrine rx in ILC: http://clinicaltrials.gov/ct2/show/NCT02206984 … #lobular2016

@mjsikora from @CUAnschutz suggests estrogen signaling is unique in ILC vs. IDC. #lobular2016 #ilc #bcsm

gerrib · October 2016

thanks Smurfs

Leslie13 · October 2016

Thanks for keeping us posted. I hope someone is developing a post-conference website so we can access presentations & studies info.

hmh23 · October 2016

With respect to a post-conference follow up. We will be meeting over the next week or so to determine what can be made available and provide to the public. We need to secure permission from everyone to include their slides and presentations. Stay posted. Thx Heather

sueinfl · October 2016

Heather, thank you again for all you did and continue to do for the symposium and us. It was amazing even if just the beginning.

Sue

Sunnyone22 · October 2016

Smurf - thanks for accumulating relevant tweets from the conference. In reading through the one-line summaries, my first (and biggest) reaction is gratitude for the amount of attention finally being paid to this BC 'stepchild'.

My second reaction is a slight concern that many of these findings aren't terribly positive for ILC (including those studies comparing it to IDC). Did anyone else get this impression?

Since we're generally diagnosed and treated exactly like our IDC sisters, I hope I"m wrong. Further, I hope that the outcomes from this symposium will lead to many new targeted ILC treatments benefiting us all (and future ILC patients.)

sueinfl · October 2016

Thanks to Lynn's tweets and Smurf's summaries. I frankly couldn't keep up after a few of them. Looking forward to the presentations that Heather can secure permission to share.

Sunnyone, I did not come out of the conference with a buoyant sense of immediate optimism. I hope my perception is due to not sleeping well for the last few weeks, especially the days before and during the symposium (I don't travel very well. :-p ) Please wait until more people chime in with better observations. The good news is that a lot of researchers have taken an interest in ILC and know we are anxiously waiting for more answers.

Sue

WndrWoman · October 2016

Have the collection of tweets been eliminated from this site?

Sunnyone22 · October 2016

4 hours ago WndrWoman wrote:

Have the collection of tweets been eliminated from this site?

It appears so......

Sunny

AmyfromMI · October 2016

Regarding the tweets, they are available on Facebook in the Invasive Lobular Carcinoma (ILC) group. If you are on Facebook, request an add. John Smith is the admin for the group. I can ask the original poster of the tweets if they can be reposted here though if you're not on Facebook. :-)

BarredOwl · October 2016

Hi Sunnyone22:

I commented on the limitations of tweets in another thread, which may inadvertently have led to deletion of the meeting tweets in this thread. As noted in that thread, I appreciate Smurfette26 and others taking the time to highlight this important meeting and the issues of keen interest in the lobular area. The tweets provide a glimpse into scientific exchange. It will be interesting to see any documentation and to follow later publications and research.

The tweets are publicly available and can be accessed by an internet search for the twitter tag #lobular2016 and then selecting "Live" as here, with the caveats explained below:

https://twitter.com/search?f=tweets&vertical=default&q=%23lobular2016&src=typd

There are significant caveats inherent in this mode of communication. Tweets are inherently top-line and largely devoid of explanation. They are by nature off-the-cuff, and probably were not carefully crafted for precision or completeness. Some are quite vague, and thus potentially misleading. Many of the tweets represent one person's understanding (subject to the accuracy thereof) of what a presenter said or illustrated. Some "tweeters" are laypersons. You can obtain biographical information by clicking on their handle.

New patients with pending medical decisions should understand that tweets from a scientific meeting are NOT a reliable source of medical information, and one needs to access the underlying abstract, slides, poster, or video presentation to understand the basis and context of tweeted remarks and whether the information represents a recap or review of current knowledge or new results, and if so, the complete context and possible limitations (e.g., based on study design, study size, composition of study population, setting). Even the content of the primary meeting materials (abstracts, slides, posters, talks) may be preliminary in nature, were often prepared in a rush, may contain errors, and are not peer-reviewed. Some meeting materials may not contain much by way of background or discussion as useful context, for example pointing out potential biases or deficiencies in study design, mentioning conflicting studies, or discussing important limitations or caveats about results. Preliminary trial results, particularly if interim in nature, may not be seen as practice-changing, absent study completion, final statistical analysis and review, and publication of a peer-reviewed paper. All such information should always be discussed with one's treatment team to ensure accuracy of understanding and applicability to one's situation.

BarredOwl

Sunnyone22 · October 2016

Barred Owl - thank you for your always valuable contribution to this and many threads.

As Twitter has been around for quite some time, I'm fairly sure most of us recognize it's limitations and are aware of the many caveats inherent in a mode of communication that is anonymous, open to anyone with an Internet connection and limited to 140 characters. It's for that reason that I don't personally choose to subscribe to it but I appreciated seeing tweets related to the conference here on the ILC thread. Those tweets were my first glimpse at what might have been discussed at the conference and like most readers of this thread who saw them, I gave their validity only the weight a tweet deserves.

I'm eager to read more definitive, accurate and useful information that I suspect is forthcoming here in the form of posts from attendees, participants and, of course, hmh23 who has done yeoman's work keeping us up to speed on this important conference. Thanks to all who've posted and will continue to post updates. This thread is a one-stop shopping site for me on the topic.

BarredOwl · October 2016

Hi Sunnyone22:

I did not mean to imply that you personally did not understand the limitations of the medium. I do appreciate the interest in the tweets, and have acknowledged it both in this thread and the other. The information is obviously very relevant in this thread.

Because I was afraid that my comments elsewhere may have triggered deletion of the tweets from this thread, I posted a link to the tweet page. In posting the link myself, I chose to include the caveats (as I often do) for other readers who may not be so savvy. As it happens, I am not so savvy. I mistakenly thought some of the tweets were from the researchers themselves, but when viewing the originals on-line, I realized that the majority were tweeted by M. Sikora.

BarredOwl

ShetlandPony · October 2016

Hi, Everyone! I went to the symposium, and I am preparing notes for you. I feel I have a duty to do this as well as I possibly can, so I am taking a few days to synthesize and compose. My first two symposium posts will be about Tamoxifen and ILC, and Scans and ILC. Thank you for your patience!

I had briefly logged in earlier to see what had been posted, and was very concerned that some of the tweets showed misunderstandings and oversimplifications. I think this symposium covered complex subjects, and sound bites do not serve us well. Nuance, clarity, and accuracy are important.

Overall, I don't feel I came away with a lot of answers, but I think it is too early to expect them. The great thing is that this first symposium happened. It shows that we have researchers and doctors thinking about ILC and working on ILC, much more than in the past. At the end of the conference, one of the presenters conveyed that he thought maybe ILC was about to have a turn at being a research focus the way triple-negative has in the past few years. And, the symposium saw the beginning of an ILC patient advocate group that could do much to further the cause. I'm sure you will be hearing more about how to join the effort. I did get some useful information and ideas at the symposium, and in the coming days I will try to share the most practical things and things to note for the future.

sueinfl · October 2016

These are the first third of the presenters at the symposium. I have looked up their bios/publications that reflect much of their presentations. Some of the links take you to their bio pages and you will have to skim to find the pubs on lobular. No interpretation from me, just their info. (I just googled their names.)

Symposium Presenters

Patrick Derksen, PhD http://www.derksenlab.org/research-interest.html

Elinor Sawyer, PhD, MRCP, FRCR http://www.guysandstthomas.nhs.uk/our-services/consultant-profiles/cancer/clinical-oncology/elinor-sawyer.aspx#na Her website lists publications, but not one specific to lobular. Will have to wait for further info.

Christopher Li, MD, PhD https://www.fredhutch.org/en/labs/profiles/li-christopher.html

Patrick Benusiglio, MD, PhD https://www.researchgate.net/profile/Patrick_Benusiglio

David Dabbs, MD http://path.upmc.edu/Personnel/Faculty/Dabbs.htm

Emad Rakha, MD https://www.researchgate.net/profile/Emad_Rakha3/publications

Judy Pang, MD https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3906642/

Thomas J.Lawton, MD https://www.med.unc.edu/pathology/faculty/dplm-faculty-profiles-2014-dr-lawton

Wendie Berg, MD, PhD, FACR http://www.radiology.pitt.edu/?faculty/faculty-detail.html?facID=311

Gary Ulaner, MD, PhD http://jnm.snmjournals.org/content/57/supplement_2/581.abstract

Charles Perou, PhD https://www.youtube.com/watch?v=a5ou3SEb2jE https://www.sciencedaily.com/releases/2015/10/151008131220.htm

MmeJ · October 2016

Thanks to everyone who was able to attend the conference and for reporting back to us. ShetlandPony, I eagerly await your summaries.

My money's still on DES as a culprit for many of us who were diagnosed young (pre-meno), especially if we've had gynecological/fertility issues, too.

readytorock · October 2016

MmeJ-

What is DES?

sueinfl · October 2016

A few more from the symposium.

Christine Desmedt, PhD http://jco.ascopubs.org/…/2…/02/24/JCO.2015.64.0334.abstract

Suet-Feung Chin, PhDhttp://mcr.aacrjournals.org/content/14/2_Supplement/A30 http://www.cambridgecancercentre.org.uk/users/sc10021

Ulrich Lehmann, PhD This is not Lehmann's paper, but the same subject.http://www.futuremedicine.com/doi/full/10.2217/epi.14.74
This is another paper by Lehmann concerning ILChttp://download.springer.com/…/art%253A10.1186%252Fs13058-0…
https://www.researchgate.net/…/281553178_Breast_Cancer_Anti…

Joyce M. Slingerland, MD, PhD, FRCP(C) Slingerland's presentation concerned the development of new cell lines with lobular characteristics. Nothing online yet, but here is her bio. http://sylvester.org/…/knowledgebase/scientist/j_slingerland

Jens-Uwe Blohmer, MD Blohmer verified what many of us already know, peritoneal mets are more common in ILC. http://www.gbg.de/…/annua…/annual-scientific-report-2015.pdf http://archive.rsna.org/…/BreastImagingandInterventional.pdf

Rebecca Riggins, PhD Could not find appropriate reference to her presentation. Will have to wait for Heather.
This was an interesting overview, although not written by her.http://jco.ascopubs.org/…/…/2016/03/23/JCO.2015.66.3872.full

Michael Knauer, MD, PhD Similar to his presentation.
http://www.practiceupdate.com/…/adjunct-anastrozole-i…/20264

Steffi Oesterreich, PhD https://www.bcrfcure.org/researchers/steffi-oesterreich Oesterreich is heading the research on the differences between ILC and IDC

fleur-de-lis · October 2016

Mme-J

I agree with you about DES being a possible issue with LCIS/ILC neoplasms. I am a DES daughter, and I started out with ALH in 2010, and moved on to LCIS, with a possible small ( 3mm) area of ILC all hidden away inside a Phyllodes tumor that I had removed last week. Since Phyllodes are rather rare...two other path opinions are in the works.

Never used birth control pills or HRT....and was never able to have children

MmeJ · October 2016

readytorock, here's a link to the wikip*dia article on DES. Now, please realize for the better-educated here that I know nothing about biology, but this has been a suspicion of mine since dx.

https://en.wikipedia.org/wiki/Diethylstilbestrol

fleur-de-lis, I can't confirm that I am a DES daughter as my mother is not around any more. I also have no siblings so can't compare notes and I don't know anything about my genes or family on my father's side. But so many individual things in my medical history point to it that for me they, cumulatively, roll up to a high probability.

sueinfl, thanks for compiling the links to the articles, biosketches, and abstracts.

ETA: I never used HRT (pre-meno at dx) and took birth control pills for less than a year when I was about 20. They certainly worked for their primary purpose, but they made me ill so I stopped and never tried again.

Fbrodya · October 2016

Matt Sikora is a good source: he is an ILC researcher who was previously in the Penn lab researching ILC. He kindly agreed to tweet out his notes from the presentation. Most are verrry technical, and I don't understand them, but I will share them withybonc

nash · October 2016

I am so excited about this symposium, the info it will yield, and the possibility of new research being done.

Unfortunately, my oncologist does not share my enthusiasm. I just got back from an appt with him. He shrugged the ILC symposium off, said he wasn't interested in anything that doesn't come out of the San Antonio conference, and said that with ILC being such a small subset with a favorable outcome, that basically no research will be done. He'd forgotten I have PILC, but shrugged that off too when I reminded him.

Sigh.

hmh23 · October 2016

Nash,

I think its time to get a new oncologist. I would suggest that your oncologist doesn't keep up on research. That may seem harsh but he obviously is oblivious to what's going on in the research world. Maybe send him the link to the symposium and he can do some research himself on who are the world's leading Lobular researchers and realize that they were 'all' in Pittsburgh together and not at San Antonio. Maybe you could share with him that Nancy Davidson, president elect for the American Association for Cancer Research was a co-chair. If he's not impressed with that then he doesn't know squat.

He obviously doesn't know that its the second most common form of breast cancer and the 8th leading cause of death in women. What does he know?

Sorry but small minded oncologists just don't cut it with me and neither should it with anyone.

nash · October 2016

hmh23, I totally agree. The irony is that he's at a major research university/facility/NCI Designated, etc. I gave him the link. He is actually very research oriented, but doesn't seem to give two shits about any of this. He did mention he knew one of the people, but I didn't catch who it was. It might have been Nancy Davidson.

I've already switched oncs twice, so he's my third. I'm running out of drs to try. Between that and my ongoing post-reconstruction issues (where there is no help from this university based hospital and they keep telling me it's in my head), I had a very frustrating day.

First International ILC Symposium | Sept 2016 | Pittsburgh, PA

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