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Topic: First International ILC Symposium | Sept 2016 | Pittsburgh, PA

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

Posted on: Apr 3, 2016 01:32AM - edited Jan 20, 2017 01:20PM by JohnSmith

JohnSmith wrote:

Jan 2017 UPDATE: Highlights from the first ever international ILC meeting will be discussed in a free webinar on: Monday, Jan. 30th, 2017 4-5pm EST.
To participate, please register here: https://attendee.gotowebinar.com/register/6547859304037292545

The First International ILC Symposium.
September 29-30, 2016 | Pittsburgh, Pennsylvania, USA
https://upci.upmc.edu/wcrc/ilcsymposium-info.cfm

The University of Pittsburgh Cancer Institute & Magee-Womens Research Institute will host the event.

Chair:
- Steffi Osterreich, PhD (University of Pittsburgh Cancer Institute)
She's the Principal Investigator of the Oesterreich Research Group, which consists of a collection of ILC researchers.
This group is responsible for the first ever US-based ILC Clinical Trial, "Endocrine Response of Lobular BC".

Co-Chairs:
- Nancy Davidson, MD (University of Pittsburgh Cancer Institute) She was the 2016 President of AACR at now at Fred Hutch in Seattle.
- Otto Metzger, MD (Harvard Medical School / Dana-Farber Cancer Institute in Boston)
Dr. Metzger was involved in the Breast International Group (BIG) 1-98 trial which compared the Letrozole (Femara) against Tamoxifen for postM ILC patients. His group launched the PELOPS Clinical Trial, which encourages ILC patient enrollment, and explores if adding Palbociclib (Ibrance) to hormone therapy improves outcome.

Patient Advocate: Heather Hillier

Oct 2016 UPDATE: The ILC Symposium was a success! This was a densely-packed scientific program with ~100 Oncology professionals. Ideas were shared and new collaborations were established.
30 survivors and co-survivors attended. An official ILC Advocacy group is being initiated.

This thread will remain active, since it serves as a template for the numerous unanswered questions that still need to be addressed. The research road that leads to new therapies can take a long time.
We encourage you to think about how we can advance the science and accelerate progress. If you have ideas, no matter how "outside of the box", please share.

A future ILC Symposium is slated for Fall 2018 in Boston, Massachusetts and we hope to see you there!

Wife was Age 45 at Dx 4/2014. BMX Surgery 6/2014 revealed: ILC, Stage 2 (Multifocal ILC, largest lesion 2.2 cm), Grade 2, ER+/PR+ (95%), HER2-, Ki-67 5-10%, Oncotype 11; Variant in the ATM gene Dx 4/8/2014, ILC, Left, 2cm, Stage IIA, Grade 2, 0/3 nodes, ER+/PR+, HER2- (IHC) Surgery 6/26/2014 Mastectomy; Reconstruction (left); Reconstruction (right)
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May 31, 2016 05:06PM - edited Aug 13, 2018 01:12AM by JohnSmith

For decades, ILC has been chronically understudied and poorly understood, so this meeting is a BIG deal and a major step towards improving outcomes, since it brings together ILC researchers, scientists, oncologists, patients and advocates for the first time ever.

We will have an opportunity to share patient perspective issues with the Oncology community during the Advocacy portion of the meeting, so please compile a list of your ILC questions and concerns.

With that in mind, I've compiled a list, from my perspective as a caretaker to a Stage II Lobular patient.
Here's those questions (in no particular order).

1. What is being done for metastatic / Stage IV ILC?

2. What should be done for premenopausal ILC?
(Tamoxifen resistance; SOFT clinical trial ILC vs. IDC subtype analysis, etc)
There are zero studies!

3. What can be done to improve imaging diagnostics, both Pre & Post-diagnosis? (FDG-PET scans can generate "false negatives").
More specifically, where are the clinical trials that evaluate next generation imaging systems for post-diagnosis surveillance?

4. Liquid biopsies are an attractive, non-invasive method for the detection, evaluation, and monitoring of cancer progression. Since ILC imaging is often inconclusive, how can they be used to gauge ILC status, which may include any of the following:
---> monitoring therapy success, especially in clinical trial settings.
---> measuring mutational load (tumor mutational burden or TMB); i.e. volume of circulating tumor DNA (ctDNA), cell free DNA (cfDNA)
---> detection of cancer antigens / neoantigens, which may be exploited by next-generation Immunotherapy
Are these blood based biopsies being optimized for ILC?

5. Despite the dogma that says breast cancer, especially Hormone-fueled (ER+) disease, is not very immunogenic, how can Immunotherapy (CAR-T, Adoptive Cell Therapy, Checkpoint inhibitors, Vaccines, Oncolytic virus, etc) be harnessed for ILC?
With CAR-T, are there any unique ILC cell-surface Antigens/Neoantigens that can be targeted by genetically engineered T-Cells?
Who, if any, are the ILC researchers exploring Immuno-Oncology?

6. Combination therapy, despite the toxicity profile, is the most effective existing therapeutic approach.
What combo's are theorized to be most effective for ILC? What is on the horizon?

7. With so many labs working on endocrine resistance (PI3K, ESR1, TGFβ, WNT4, etc), what is the latest promising approach to overcome resistance in ILC?
When will science develop a diagnostic test to determine who is at higher risk for resistance?

8. An ongoing issue across the Oncology industry is cancer patient data is stuck in silo's. It's not being shared among researchers. Given the complexity and heterogeneity that large genomic studies are revealing, there's a thought that Big Data analysis may be able to identify mutational patterns, if the sample size is large enough. Since ILC is less common, this issue of data being sequestered is exacerbated.
What infrastructure or platform exists among institutions that allows sharing of ILC data, yet still maintains security and patient privacy?

9. Is there any effort to create an ILC tissue bank, which would accelerate discoveries?
Can the ILC research community tap into the tissue being collected by the MBCproject (Broad Institute / Dana-Farber research initiative)?
Genomic Health, the makers of the Oncotype DX test, is rumored to have 30,000 ILC tissue samples. Is it a crazy notion to think that they re-banked the tissue and would be willing to share it with ILC researchers?

10. How can we educate and encourage ILC patients on the importance of participating in these tumor tissue projects?

11. We need more ILC advocacy. Who are the existing ILC advocates? Is an organized advocacy group needed? RESOLVED! https://lobularbreastcancer.org/ has been established. Thank you!

12. Would the ILC community benefit by having a central website, housing all of the research studies, papers, latest news, progress, trials, events, upcoming meetings, theories, etc?

13. Now that recent studies (TCGA, Jules Bordet, METABRIC, etc.) have elucidated on the unique molecular characteristics of ILC, how can we exploit this info to launch clinical trials and which existing trials might benefit metastatic patients?

14. Some clinical trials fail due to lack of patient enrollment. Considering the under-representation of ILC, how can we ensure these trials are adequately enrolled? (e.g. Pitt ILC biomarker trial)

15. How can we encourage newly diagnosed patients to enroll in the Pitt ILC biomarker trial? (https://clinicaltrials.gov/ct2/show/NCT02206984) Locations enrolling ILC patients include: 1. Magee Womens Hospital of UPMC (Pittsburgh, Pennsylvania), 2. Mayo Clinic (Rochester, Minnesota), 3. MD Anderson (Houston, Texas)

16. Which, if any, historical Phase III clinical trials are worth mining for ILC vs. IDC subtype analysis?

17. Biomarkers: Beyond the ER, PR, HER2 biomarkers, research continues to tie ILC with over-expression of other receptors such as the Androgen receptor (AR), Prolactin receptor (PRLR), etc
What is the research status of these newer biomarkers?
What is the status of these biomarkers in clinical trials?
What therapies can theoretically target them?

18. Genomic studies continue to show a vast amount of mutational heterogeneity. What "omics" studies (Proteomics, the study of proteins; Transcriptomics, the study of RNA transcripts; Metabolomics, the study of cellular metabolism, etc.) have been done that yield a better landscape and elucidate common ILC targets?

19. Is anyone working on re-engineering the CDH1 gene so E-Cadherin functions properly, or is this still a lab concept? Assuming this is ever achieved, what are the theoretical outcomes? Would this eliminate the cancer or simply change the cancer phenotype?

20. Many theorize that cancer evolves, progresses, and metastases from a sub-population of cells known as cancer stem cells (CSCs). They are also referred to as tumor initiating cells or progenitor cells. What is being done to identify these cells related to ILC?

21. Are there any Stage IV ILC survivors (exceptional responders) that have achieved a durable remission using conventional therapies? If so, what can we learn from them?

22. All solid tumors have a Tumor MicroEnvironment (TME). The TME contains numerous immune-suppressive factors that coax the cells that surround the tumor to protect itself against the immune response. For example, Regulatory T cells (Tregs) are part of the TME and are necessary to prevent autoimmunity, but excessive Treg function contributes to cancer progression by inhibiting anti-tumor immune responses. Another way to describe this is using the "Seed and Soil" analogy. Cancer cells are seeds. Your body is the soil. Seeds often spread to distant organs BUT whether or not the cancer grows depends on the soil (the TME). It's complex, but evidence suggests that the TME determines ones fate. Immunotherapy drugs are considered soil therapies. They change the conditions of the soil, allowing your immune cells (T-Cells, B-Cells, NK cells, Macrophages, etc) to eradicate the cancer.
What do we know about the ILC TME that is unique and how can this be exploited?

23. During mid 2016, a $1.5 million donation for ILC research was made to Dana Farber / Harvard.
For details, see page 5 of the following pdf file.
http://www.dana-farber.org/uploadedFiles/Library/newsroom/publications/Impact/2016/impact-summer-2016.pdf
How can we raise more money to fund ILC research? Can we establish a central hub for donations?

- As patients and caretakers, what can we do to help researchers push the needle of progress forward?

From your perspective, what issues need to be addressed?

Wife was Age 45 at Dx 4/2014. BMX Surgery 6/2014 revealed: ILC, Stage 2 (Multifocal ILC, largest lesion 2.2 cm), Grade 2, ER+/PR+ (95%), HER2-, Ki-67 5-10%, Oncotype 11; Variant in the ATM gene Dx 4/8/2014, ILC, Left, 2cm, Stage IIA, Grade 2, 0/3 nodes, ER+/PR+, HER2- (IHC) Surgery 6/26/2014 Mastectomy; Reconstruction (left); Reconstruction (right)
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May 31, 2016 09:26PM rnsparki wrote:

What is the incidence of ILC recurrence as stage IV metastatic BC? 

Does ILC recur more frequently than other types of BC? 

Is,there a link between ILC and gastric mets or gastric cancer? Is there research to show,this link? 

Are there any studies to find a way to diagnosis lobular carcinoma in the early stage other than clinical breast exam?  

(Please give references for answers to questions, if available.) 

Is anything being done to correct the way SEER data on breast cancer is being collected? Particularly the stats on ILC and other types of breast cancer? 

There isn't even an ICD10 code for type/stage of breast cancer or an ICD10 for metastatic breast cancer. This is bizarre when there are so many ICD10 codes to be specific about a leg fracture But not breast cancer. 

I am a nurse practitioner and found my cancer when performing my monthly SBE at age 55 in August 2006.  It was a thickening and change in density and texture of the right upper quadrant of R breast. A diagnostic mammo and US confirmed my suspicions.  I did have an US guided biopsy of the area and two other areas of the R breast by a radiologist that were positive. An MRI showed 2 areas of concern in the left breast that was confirmed as cancer with MRI guided biopsies. I was treated with R modified radical mastectomy and L simple mastectomy. Largest tumor was ILC 1.8 cm, no positive nodes, Stage IC, grade 2, ER+ PR+ HER2 neu negative. Tumors were ILC, LCIS, DCIS, IDC, and invasive  tubulobular. Did not require chemo or radiation. 

Reconstruction done approx 1 yr later: bilateral free TRAM flaps. Started anastrozole 2/2007 until diagnosed with MBC at 62 years old. Diagnosed with stage IV MBC 9/2014 after a CT scan for an acute acalculus choleycystitis revealed " innumerable bone lesions concerning for metastatic disease considering patient's history." Metastasis to bone with innumerable osteoblastic lesions throughout my osseous skeleton confirmed via bone biopsy to be the same as my breast cancer from 2006. It has now progressed to my bone marrow. I have mostly osteoblastic lesions with some osteolytic lesions. I participated in a phase III clinical trial of exemestane and entinostat/ placebo (also received Xgeva not part of trial) as my first line of treatment for MBC for approximately one year with progression to my bone marrow which of course, ended my participation in the trial. Now on Xeloda and Xegeva but most likely requiring a change in treatment protocol due to progression still in bones and marrow. No evidence of visceral organ involvement via CT scan. The marrow in my calvarium and most of my sacrum is completely replaced with blastic lesions. I am treated at Fox Chase Cancer in PHL, PA. 

Thank you so much for researching lobular breast cancer and organizing a conference devoted solely to this type of breast cancer. Please remember 30% of early stage breast cancer will metastasize. Stage IV needs more money devoted to research. 

Dx 10/6/2006, LCIS/DCIS/ILC/IDC/IDC: Tubular, Both breasts, 1cm, Stage IA, Grade 1, 0/15 nodes, ER+/PR+, HER2- (FISH) Surgery 12/14/2006 Lymph node removal: Left, Right, Sentinel, Underarm/Axillary; Mastectomy: Left, Right; Reconstruction (left): Free TRAM flap; Reconstruction (right): Free TRAM flap Hormonal Therapy 2/1/2007 Arimidex (anastrozole) Dx 10/15/2014, Stage IV, ER+/PR+, HER2- Hormonal Therapy 11/29/2014 Aromasin (exemestane) Chemotherapy 12/4/2015 Xeloda (capecitabine)
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Jun 4, 2016 07:55PM sueinfl wrote:

Thank you, John!

Sparki, I am so sorry about your recurrence. I agree about more research for metastatic. If they can arrest/treat metastatic cancer, they can work their way back from there. I hope a new treatment plan will keep the beast at bay until this new interest produces results.

Are there clinical trials using immunotherapy out there for bone marrow mets? Can tumor infiltrating lymphocytes be harvested and used?

Sue

Dx 9/18/2009 PILC ER/PR+ HER- stage III Lt Br, TAC chemo first,2/4 nodes +, bilat mx w/HIP at NOLA, no rads DX April 2013 Regional recurrence. Surgery, rads followed by letrozole. 2017 Stage IV mets to bones, liver. Surgery 2/24/2014 Lumpectomy: Left Radiation Therapy 4/13/2014 Breast, Lymph nodes Dx 8/19/2017, ILC, Stage IV, metastasized to bone/liver, ER+/PR-, HER2- Radiation Therapy 8/29/2017 External: Bone Targeted Therapy 9/13/2017 Ibrance (palbociclib) Hormonal Therapy 9/13/2017 Faslodex (fulvestrant)
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Jun 4, 2016 09:37PM wallycat wrote:

If tamoxifen does not affect ILC, are the AIs of any real value?

Does oncotypeDX apply to ILC,

Some have said grading is irrelevant for ILC. Is this true?

When ILC becomes mets, where does it tend to go? (Since it is so sneaky, what should patients be watching for more diligently.)



Dx 4/07 1 month before turning 50; ILC 1.8cm, ER+/PR+, HER2 neg., Stage 1, Grade 2, 0/5 nodes. Onco score 20, Bilateral Mast., tamoxifen 3-1/2 years, arimidex-completed 4/20/2012
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Jun 6, 2016 10:32AM Lojo wrote:

I agree about examining Oncotype predictions specifically for ILC. Are there any of the individual gene expression patterns involved in the Oncotype more predictive of ILC behavior than IDC behavior? (or vice versa)

Surgery: Is there a difference in recurrence rates between LX+ rads / MX for ILC? What about post-MX rads for ILC? (There is very little on post MX rads in comparison to MX only in general, and nothing I've seen about ILC in particular). There is a good amount of research on LX+rads compared to MX without rads).

Is there benefit of prophylactic MX for ILC? (There doesn't seem to be in general -- though the time frames examined are still relatively short -- with the exception of BRCA1 carriers and possibly those with a family history (even among BRCA1 non-carriers) but I don't think the comparisons have been done for IDC vs ILC)

ILC seems likely to recur on the long time horizon - 10+ years. Although ILC is often diagnosed in older women, the long time frame is still relevant, especially for those diagnosed at pre-menopausal ages. What combinations of hormonal therapy are beneficial? Right now I'm on the 10 yr tamoxifen plan unless I hit menopause before that. What about an AI after 10 yrs of tamoxifen? Are there any of those studies in the works?

Recurrence prevention: Does (any) alcohol increase rates of recurrence? Does aspirin decrease rates of recurrence? Are these rates different for IDC vs ILC? Vitamin D?

Diagnostics: I had my first mammogram at 35 because of family history, and had clean mammograms until (and including!) when the ILC lump was found by physical exam. US didn't show much either, and it took an MRI after the biopsy to really see the tumor. I don't know what type of BC my mother had - but should there be different screening recommended for those with a family history of ILC, which mammograms so often miss? Annual MRIs by 30? 35? I just feel like if I'd had an MRI a few years earlier, I might have been able to have a lumpectomy / caught it at a much smaller size.

Does LCIS predict ILC? What should be done for those diagnosed with LCIS?

dx at 41, ILC, stage 2a, 4cm, 0/1 nodes, ER+/PR+, HER2-, grade 1, BMX 11/2013, tamoxif 1/2014
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Jun 10, 2016 02:21PM JohnSmith wrote:

Some great questions. Thanks everyone!

I know there's more out there, so review your notes, doctor appointment recordings and keep those questions coming.

Wife was Age 45 at Dx 4/2014. BMX Surgery 6/2014 revealed: ILC, Stage 2 (Multifocal ILC, largest lesion 2.2 cm), Grade 2, ER+/PR+ (95%), HER2-, Ki-67 5-10%, Oncotype 11; Variant in the ATM gene Dx 4/8/2014, ILC, Left, 2cm, Stage IIA, Grade 2, 0/3 nodes, ER+/PR+, HER2- (IHC) Surgery 6/26/2014 Mastectomy; Reconstruction (left); Reconstruction (right)
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Jun 11, 2016 08:42PM WndrWoman wrote:

I know there is a study that shows that femara is more effective than tamoxifen for ILC. So one question I have is does it then matter which AI you take? Is femara more effective than anastrozole?

Dx 10/2014, ILC, Left, 1cm, Stage IB, Grade 2, 0/1 nodes, ER+/PR+, HER2- Surgery 10/15/2014 Lumpectomy: Left; Lymph node removal: Left, Sentinel Hormonal Therapy 11/11/2014 Arimidex (anastrozole) Radiation Therapy 12/16/2014 Whole-breast: Breast
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Jun 12, 2016 03:14PM Moondale wrote:

1) Since clearly not all ILC is resistant to Tamoxifen, is there a way of testing for resistance? Which subtypes of ILC might still have a good benefit from Tamoxifen? How much benefit can one expect from switching from Tamoxifen to an AI? Which subtypes of ILC seem to benefit the most from a switch to an AI? What kind of hormone therapy scheme seems most suitable for which subtype of ILC?

2) Do ILC patients profit more from ovarian suppression than IDC patients given the high dependency on estrogen?

3) Does it make sense for patients to ask for a GG (Genomic Grade) grading since HG (histologic grade) seems noninformative for ILC?

Thank you so much John for posting the information on the first ILC symposium. I would never have known about it without your post. I was always told that the treatment of ILC does not differ from that of other forms of BC. Now all of the sudden that no longer seems true!
Dx 7/4/2011, ILC, Left, 3cm, Stage IIA, Grade 2, 0/1 nodes, ER+/PR+, HER2- Surgery 7/6/2011 Lumpectomy: Left Chemotherapy 9/16/2011 Adriamycin (doxorubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxotere (docetaxel) Hormonal Therapy 3/15/2012 Femara (letrozole), Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Jun 15, 2016 03:42PM JohnSmith wrote:

Hi Moondale,
It's nice that this thread brought you back after so many years.
Good questions, especially the resistance testing, something I've thought about a lot.



For others, please review the list and add your questions.
We have a couple months to brainstorm before the conference starts.

Wife was Age 45 at Dx 4/2014. BMX Surgery 6/2014 revealed: ILC, Stage 2 (Multifocal ILC, largest lesion 2.2 cm), Grade 2, ER+/PR+ (95%), HER2-, Ki-67 5-10%, Oncotype 11; Variant in the ATM gene Dx 4/8/2014, ILC, Left, 2cm, Stage IIA, Grade 2, 0/3 nodes, ER+/PR+, HER2- (IHC) Surgery 6/26/2014 Mastectomy; Reconstruction (left); Reconstruction (right)
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Jun 16, 2016 11:03AM MmeJ wrote:

As many have asked, is there a value to assigning a grade to hormone-positive ILC? In IDC, grade is one of the dimensions of diagnosis that can drive treatment plans. (I mention hormone-positive because the hormone-negative status is rare in ILC, but also because hormone-negative at this point almost always will get chemo).

When I was diagnosed, the surgeon told me (and perhaps it was true at the time) that ILC has a greater tendency to show up in the other breast, so bilateral mastectomy recommended more often. Studies have shown this is not necessarily true. So why does practice continue to make that recommendation more often than not?

NCCN's guidelines for follow-up: Let me guess ... they're based on IDC and ILC is kind of an afterthought. Given that ILC rarely forms lumps and often doesn't show up on mammos (that will not change unless and until 3D mammos become commonplace), many of us are stages II and, especially, III, at diagnosis. In other words, routine imaging fails many of us until we are locally advanced. Guidelines = no exploration/follow-up unless symptomatic. That is not helpful for ILC. Leading to ...

... are ILC METS as difficult to detect as the original lesions?

And as others have mentioned, so much of the literature on ILC (what there is of it) is about post-meno. I echo the calls here about pre-meno women.

(Sorry, much of this is personal testimonial/ranting and probably not helpful to the discussion.)

The big one for me for pre-meno women is: Is there any effort to try to identify a connection between ILC and being a DES daughter? Our mothers' memories are really not sufficient, and even for those who do not develop ILC, there needs to be a dialogue between MOs and ob/gyns about this. Is there anything on the horizon for a test to see if a patient is a DES daughter (or, for that matter, son)?

From that, how many ILC women also have, or have had, ob/gyn and fertility issues?

DX 07/2010, L ILC Stage IIIc, Grade 1, 15/15 nodes. R IDC, 1cm, Stage I, Grade 1, 0/2 nodes. Both ER+PR+ HER2-.
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Jun 18, 2016 12:39AM Tannyh wrote:

Some questions for the conference. Thanks for doing this!


Other than CDH1, what mutations and copy number variations appear to be most significant in ILC.?

Does distinguishing the genomic features of ILC have any impact on treatment?

Do you agree with Cirello et al that based on genomic analysis, there appear to be at least three distinct sub-types of ILC?

Why do you think tumor immune characteristics and host immune responses are prognostic in IDC but not ILC?

What are the important features that distinguish the high and low immune susceptible subtypes of ILC?

Is it likely that the immune sub-type of ILC will prove to be responsive to immune check point inhibitors?

Do you think chemo may help to selectively eliminate Tregs and thus enables CTLs to kill tumor cells when given in combo with immune checkpoint inhibitors?

Do you think ILC AND IDC are completely different entities.



TH
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Jun 20, 2016 12:03PM Lojo wrote:

Another question spurred by my recent 6 month check-up. I've now been on tamoxifen for 2.5 yrs, and expect to be on it for a total of 10 yrs unless I hit menopause before then (I'm 44 now). My oncologist suggested that there's a likelihood that once the 10 yrs of tamoxifen are done that they might continue with 5 yrs of AI (or even 10...). She said it's a ways off, obviously, but I think these sorts of hormone treatment questions should be pulled apart for ILC vs IDC as well.

(Has anyone else with ILC reached 10 yrs on tamoxifen? I know it's a relatively recent recommendation)

dx at 41, ILC, stage 2a, 4cm, 0/1 nodes, ER+/PR+, HER2-, grade 1, BMX 11/2013, tamoxif 1/2014
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Jun 23, 2016 01:29PM jackel wrote:

Hello Joh Smith,

I am a stage 4 ILC patient and informal advocate. I was thinking of attending the symposium since there is such a dearth of research on ILC,however I don't know if it will be too technical since it is primarily for Dr's. Can you advise whether you think it would be worthwhile?

Thanks,

jackel

Dx 2/2013, ILC, Left, 6cm+, Stage IV, metastasized to bone, Grade 2, 1/1 nodes, ER+/PR-, HER2- (IHC)
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Jun 23, 2016 03:19PM sueinfl wrote:

Jackel, I know you addressed your question to John and I hate to be rude and break into the conversation, but I am going, if for no other reason, than to identify potential sources of treatment. I plan on introducing myself to as many of the professionals as possible to put a face on this disease and let them know I am interested in more than just waiting for the anastrozole I am currently on to stop working.

I cannot help thinking, the more of us they see and hear, the more reinforced their motivation. :-)

Sue

Dx 9/18/2009 PILC ER/PR+ HER- stage III Lt Br, TAC chemo first,2/4 nodes +, bilat mx w/HIP at NOLA, no rads DX April 2013 Regional recurrence. Surgery, rads followed by letrozole. 2017 Stage IV mets to bones, liver. Surgery 2/24/2014 Lumpectomy: Left Radiation Therapy 4/13/2014 Breast, Lymph nodes Dx 8/19/2017, ILC, Stage IV, metastasized to bone/liver, ER+/PR-, HER2- Radiation Therapy 8/29/2017 External: Bone Targeted Therapy 9/13/2017 Ibrance (palbociclib) Hormonal Therapy 9/13/2017 Faslodex (fulvestrant)
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Jun 24, 2016 09:51PM JohnSmith wrote:

Sue,
No worries. Your reasons to go resonate with me too.

Jackel,
I'm not qualified to answer your question but thanks for contributing to this thread. The fact that you joined the forum and added a comment reflects your interest. Perhaps your question is better suited for either:
Lindsay Surmacz - Project Manager at UPMC (surmaczl AT upmc DOT edu) or
Heather Hillier - Patient Advocate (I don't have email but could probably dig one up if needed. If so, 'Private Message' me).

If you decide not to attend, please give some thought to your ILC questions and add them below.

There's no doubt that I'll be lost in the scientific conversations.
I'm interested in the patient advocate portions of the meetings. I'm also interested in learning how we (as patients and caretakers) can work with researchers to accelerate progress. The dearth of ILC research is sobering, especially for younger ILC women where few, if any, studies exist.


Thanks again to everyone else who has contributed with questions.

Keep the questions coming!

Wife was Age 45 at Dx 4/2014. BMX Surgery 6/2014 revealed: ILC, Stage 2 (Multifocal ILC, largest lesion 2.2 cm), Grade 2, ER+/PR+ (95%), HER2-, Ki-67 5-10%, Oncotype 11; Variant in the ATM gene Dx 4/8/2014, ILC, Left, 2cm, Stage IIA, Grade 2, 0/3 nodes, ER+/PR+, HER2- (IHC) Surgery 6/26/2014 Mastectomy; Reconstruction (left); Reconstruction (right)
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Jul 5, 2016 03:57PM MmeJ wrote:

Goodness, does this demonstrate my utter ignorance about biology:

ILC does not form tubules - that's one of the measurements in the grading scale - so why, for those of us who received it, are we given a chemotherapy agent that acts against tubule formation? The taxane group. They have an effect on mitotic activity (another measurement in the grading scale that IS applicable to ILC), interrupting growth of cancer cells at some point in their development, so perhaps that is useful but I wonder if anyone's really looked at appropriate chemo regimens for ILC (if indeed there are any) or if it's yet another overlaid protocol from IDC since our docs can only use approved regimens.

Here's a link to a wikip*dia piece about these agents. Or perhaps they are useful enough in that they inhibit blood vessel growth, giving the buggers a lesser chance of achieving escape velocity.

https://en.wikipedia.org/wiki/Chemotherapy#Anti-mi...

Hmmm, maybe the low number on the mitotic portion of the index for almost all ILC makes the taxanes less useful for us. Just typing out loud.




DX 07/2010, L ILC Stage IIIc, Grade 1, 15/15 nodes. R IDC, 1cm, Stage I, Grade 1, 0/2 nodes. Both ER+PR+ HER2-.
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Jul 5, 2016 11:13PM toomuch wrote:

MmeJ - I was also diagnosed July, 2010 and I asked my MO that exact question before I got Taxol. He basically said we don't know enough to not use Taxol at this time. I often think that I have permanent neuropathy from a drug that likely didn't benefit me at all! It's hard to second guess our decisions as we make the best decisions that we can with the information available at the time.

I see that you had neoadjuvant chemo. Did your tumor shrink?

"Every trial endured and weathered in the right spirit makes a soul nobler and stronger than it was before" Dx 7/13/2010, ILC, <1cm, Stage IIA, Grade 2, 2/12 nodes, ER+/PR+, HER2-
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Jul 6, 2016 09:55AM - edited Jul 6, 2016 09:56AM by MmeJ

toomuch, hi there and thanks for sharing your info. I see that both of us are coming up to six years from our dx date.

I, too, have permanent neuropathy in my fingers (they came back about 70%) and feet (essentially a lost cause but have just recently, within the last couple of months, have a little bit of sensation in the front half + toes). The neuropathy started right after my first infusion.

I hadn't done enough research at the time to know to question the use of a taxane; I see that you did and your MO's reason makes sense. I am sure my MO would have told me the same thing if I had asked. Perhaps I will ask him when I see him next month! A year ago I asked him if there was anything he would do differently if I came to him that day, five years later, and he said nothing different. But I don't see a lot of women here being given TAC (at least by the sigs) in the last couple of years.

According to imaging, the ILCs in the left shrunk from an area about 10 cm on pre-chemo MRI to no evidence of malignancy at the post-chemo, pre-surgery MRI, to about 2.5 cm at pathology. Unfortunately, all the lymph nodes were positive at pathology, but that is not unusual for ILC, I guess.

BUT - given all the mistakes they made over the years, my confidence in their interpretations of my imaging is not high, so I don't know if the ILC was really 10 cm or not. At pathology, they found deposits of ILC in all four quadrants, and that was the first time anyone saw/mentioned them. I also had DCIS and Paget's of the nipple in the left; at pathology was the first time anyone saw/mentioned that, either. Of course chemo doesn't attack the non-invasive stuff so apparently that doesn't weigh against prognosis.

It was no surprise that the chemo did obliterate the Stage I IDC on the right, borne out on both post-chemo/pre-surgical imaging and at pathology.

DX 07/2010, L ILC Stage IIIc, Grade 1, 15/15 nodes. R IDC, 1cm, Stage I, Grade 1, 0/2 nodes. Both ER+PR+ HER2-.
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Jul 6, 2016 09:31PM Hipline wrote:

Sixteen years ago my sister in law was diagnosed with early stage ILC. Almost the exact same diagnosis as me. She has just been diagnosed now with triple negative metastatic BC with bone mets. Her oncologist told me this was unusual to be TN but not unheard of. They did an Androgen (AR) test on her and she is highly positive to the Androgen receptor. I'm learning a few things about AR now and how there is some research that ER+ cancers that fail on tamoxifen can be AR+ and may respond better to other therapies. They specifically are measuring the role of AR:ER. My question is:

Should androgen testing also be done on tumors for ILC?



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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Jul 14, 2016 03:49PM - edited Aug 1, 2016 09:28AM by hmh23

My name is Heather Hillier and I am the Advocate Co-Chair for the 1st International ILC Symposium.

Like so many ILC survivors, my diagnosis came late and I was Stage 3A at diagnosis. I am so excited to be participating in the 1st International ILC Symposium as Patient Advocate Co-Chair. We have amazing researchers in Pittsburgh who are committed to answering your questions and concerns you have raised in this discussion board.

The goal of this gathering of 32 of the world's leading ILC researchers is to gain a better understanding and improving care for thousands of women with ILC is of high significance. We hope to gain a greater appreciation for the characteristics of patients, unique tumors, and treatment response for ILC and an expanded knowledge of options for patients with ILC, such as patient selection for neoadjuvant versus adjuvant, breast conserving surgery, etc.

This symposium will form the foundation for a vibrant, collaborative community of scientists that will lead research in ILC, ultimately resulting in improved outcomes for patients with this disease.

We are also focusing on ILC Advocates with a special breakout session for advocates only on Thursday afternoon to discuss many of the topics you have addressed here. We will also have an open Q&A that evening with Researchers, Clinicians and Advocates. On Friday morning we will present our findings from the Advocates to all attendees.

Additionally, I am compiling a booklet of ILC survivors and their respective stories to provide to each of the clinicians and researchers. So many of our stories are the same yet are experiences, side effects and treatments are different. We hope that this will help personalize this disease for those in attendance. Over the next few days, I will post a brief Q&A for anyone and everyone with ILC to complete. I am also hoping to secure a photo of each participant with their respective story.

Finally, we will be offering a limited number of scholarships to advocates who will be traveling to the symposium. We have a limited amount of funds available forscholarships.Details to come. This is a 1st time opportunity to have our voices heard by the best ILC researchers in the world.

Below is the registration page for all interested.

https://ccehs.upmc.com/registrantCategories.jsf

Please don't hesitate to reach out to me with any and all questions. Thank you, in advance for your time and I hope to hear from you soon.

Sincerely, Heather Hillier

Realize the majority of your body is healthy! Dx 1/28/2010, ILC, 2cm, Stage IIIA, Grade 2, 5/9 nodes, ER+/PR+, HER2-
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Jul 14, 2016 04:06PM hmh23 wrote:

Sue, This is Heather Hillier. I am the Patient Advocate co-chair for the ILC Symposium. I see that you are interested in attending. Please feel free to contact me with any and all questions. I did post a few comments on the Advocates Role in the symposium so please take a minute to read. Look forward to hearing from you. Heather

Realize the majority of your body is healthy! Dx 1/28/2010, ILC, 2cm, Stage IIIA, Grade 2, 5/9 nodes, ER+/PR+, HER2-
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Jul 14, 2016 07:04PM sueinfl wrote:

Thank you, Heather. I can't tell you how wonderful it is to read the title advocate and lobular in the same post. With the exception of JohnSmith and Tannyh on this and the Inspire website, advocacy is not something I have experienced during my cancer journey.

I look forward to adding my story and meeting you at the symposium.

Strength and hope to us all,

Sue

Dx 9/18/2009 PILC ER/PR+ HER- stage III Lt Br, TAC chemo first,2/4 nodes +, bilat mx w/HIP at NOLA, no rads DX April 2013 Regional recurrence. Surgery, rads followed by letrozole. 2017 Stage IV mets to bones, liver. Surgery 2/24/2014 Lumpectomy: Left Radiation Therapy 4/13/2014 Breast, Lymph nodes Dx 8/19/2017, ILC, Stage IV, metastasized to bone/liver, ER+/PR-, HER2- Radiation Therapy 8/29/2017 External: Bone Targeted Therapy 9/13/2017 Ibrance (palbociclib) Hormonal Therapy 9/13/2017 Faslodex (fulvestrant)
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Jul 14, 2016 07:12PM 614 wrote:

The symposium sounds awesome.  Thanks for letting us know about it.  I wish that I could go, but unfortunately, I can't.

Hormone + Pleomorphic ILC, Pleomorphic LCIS,& Invasive Tubular Carcinoma for 1st BC DX. Hormone negative, Grade 3 DCIS for 2nd BC DX. History of dispersed ALH along with PASH, FEA, and focal atypia. Oncotype 14, Ki67: 21%. Dx Premenopausally. Dx 6/25/2014, ILC, Left, 1cm, Stage IA, Grade 2, 0/2 nodes, ER+/PR+, HER2- Dx 6/25/2014, LCIS, Left, 1cm, Grade 2, 0/2 nodes, ER+/PR+, HER2- Dx 7/22/2014, IDC: Tubular, Left, <1cm, Stage IA, Grade 1, 0/2 nodes, ER+/PR+, HER2- Dx 7/22/2014, LCIS, Left, 4cm, Grade 2, 0/2 nodes, ER+/PR+, HER2- Surgery 7/22/2014 Lumpectomy: Left; Lymph node removal: Left, Sentinel; Prophylactic ovary removal Radiation Therapy 9/7/2014 Whole-breast: Breast Hormonal Therapy 10/5/2014 Arimidex (anastrozole), Zoladex (goserelin)
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Jul 16, 2016 10:09AM Leslie13 wrote:

Sueinfl,

I'm sorry you feel no one has been an advocate. I was active here more last year when dx'd, but after 4 surgeries (one a joint replacement) and being on Femara a year, it's all I can do to self advocate. I've read hundreds of research studies so I can make the best decisions for me.

So I declined standard chemo because it's been shown to have limited success with ILC. I had a double mastectomy with implant reconstruction, which is the right thing to do (the double mastectomy), but no picnic. I've had 3 surgeries on the Foobs, and looking at 2 more. Also had a Lymph node resection instead of radiation because I only had a few micromets and sometimes radiation isn't the best for ILC. IDC has a target. ILC doesn't so we get more pain from whole breast radiation, and there's questions about when radiation should be used - it causes cancer sometimes.

Now is the question of how to avoid tolerance to Femara and drugs like it. After daily dosing, many women eventually find the AI's like Femara quit working. Some studies are looking at intermittent dosing - that's taking breaks like 1-3 months now and then. The medications then work again. But you won't find much on it because of the problems getting women to comply with taking meds. Usually the solution being looked at is adding new meds. With intermittent dosing, you need to start before you develop tolerance.

And there's the profit motive. Dr's don't get paid more for doing less. Drug companies frequently sponsor research, so they want to find new meds. Which isn't altogether bad. ILC needs it's own treatment strategies. Most Dr's treat it like IDC, so getting your Onco to listen is one of the biggest challenges. I fired 3 before finding one who understood the need for different treatment protocols for ILC.

I really wish I was strong enough to go to the symposium, but my hip replacement was 2 months ago and I'm too weak to travel from the Pacific NW.

I think the world of John Smith, and am glad he's participating. His wife is very lucky to have him, we are too. But he's not fighting with cancer himself - he's helping a loved one. Having cancer kicks your butt and most of us in treatment don't have his energy I'm guessing.

ILC does need advocates, and am overjoyed to see our cancer with it's own symposium, which includes advocacy training. However, Sueinfl, this is a huge beginning step. The kind of advocacy you seek is available in pieces. It will likely take another 5-10 years to have specific treatment for ILC trickle into standard practice.

I encourage you to read through the threads here on ILC. There's many gems. And you can talk to experts at the American Cancer Society with specific questions. When I was trying to decide whether to have radiation, I called and talked to a Radiology Oncologist at length. They let me know since I had a ALND, it was of questionable benefit in my case. We're all different too, so I can only guide my own treatment. No one is a better advocate for me, than me.

But I hate to see you say only 2 forum members are helpful. There's a ton of info here by many members. You have to take the time to find and read it



Dx 4/17/2015, ILC, Both breasts, 3cm, Stage IIIA, Grade 2, 4/22 nodes, ER+/PR+, HER2- Surgery 9/29/2015 Lymph node removal: Right; Mastectomy: Left, Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Hormonal Therapy Femara (letrozole)
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Jul 16, 2016 10:20AM Leslie13 wrote:

hmh23,

Are there ways to view the Symposium via distance technology? Or at the very least have access to presentation content?

I would LOVE to go, but know the physical stress is more than I can handle. Have arrangements been made for people who want access, but can't be there

Dx 4/17/2015, ILC, Both breasts, 3cm, Stage IIIA, Grade 2, 4/22 nodes, ER+/PR+, HER2- Surgery 9/29/2015 Lymph node removal: Right; Mastectomy: Left, Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Hormonal Therapy Femara (letrozole)
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Jul 16, 2016 05:56PM hmh23 wrote:

I don't believe we have a remote set up available and I have asked about posting the researchers and clinicians presentations.  As soon as I know you will know.  Heather 

Realize the majority of your body is healthy! Dx 1/28/2010, ILC, 2cm, Stage IIIA, Grade 2, 5/9 nodes, ER+/PR+, HER2-
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Jul 16, 2016 06:51PM mary625 wrote:

Heather, i hope to support the symposium if i am available on those dates. I am so far very lucky to have made a great recovery from treatment and returned to a very active life. Work may conflict. If not, i hope to contribute to the study of ILC.

Dx 8/29/2011, ILC, 1cm, Stage IIIC, Grade 2, 10/16 nodes, ER+/PR+, HER2- Chemotherapy 9/25/2011 AC + T (Taxol) Surgery 2/5/2012 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left, Right Hormonal Therapy 3/11/2012 Femara (letrozole) Radiation Therapy 3/12/2012 Surgery 9/23/2014 Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap
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Jul 16, 2016 08:57PM Sunnyone22 wrote:

I, too, would be interested in a remote viewing of this symposium. Thank you, Heather, for entering this thread to let us know of your symposium role. I look forward to your list of questions for ILC survivors and intend to add my story. And thank you, John, for your continued advocacy.

My questions are focused on three things:

1). More effective screening for ILC than current mammography

2). Continued effectiveness of aromatase inhibitors

3. Possible immunotherapies for ILC

Carpe Diem Dx 1/15/2016, ILC, Left, 1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR-, HER2- Surgery 2/16/2016 Lumpectomy: Left; Lymph node removal: Sentinel Radiation Therapy 3/14/2016 Whole-breast: Breast Hormonal Therapy 4/1/2016 Femara (letrozole)
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Jul 16, 2016 11:54PM Optimist52 wrote:

I would also be very interested in a remote viewing of the symposium and my questions are the same as Sunnyone and also I would like to know more about pleomorphic ILC.



Second diagnosis PILC - Oncotype 22, isolated tumour cells in 2 nodes Dx 10/2003, ILC, Left, 1cm, Grade 2, 0/2 nodes, ER+/PR+, HER2- Surgery 10/22/2003 Lumpectomy: Left; Lymph node removal: Sentinel Radiation Therapy 1/2/2004 3DCRT: Breast Hormonal Therapy 3/2/2004 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx 6/23/2015, ILC, Left, 4cm, Stage IIA, Grade 2, 0/9 nodes, ER+/PR+, HER2- Surgery 7/5/2015 Lymph node removal: Underarm/Axillary; Mastectomy: Left Hormonal Therapy 8/12/2015 Femara (letrozole)
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Jul 17, 2016 04:56PM WndrWoman wrote:

Sunnyone has three solud categories. Besides more on mammography and tomosynthesis effectiveness, I would ask about biopsies. My initial biopsy result was IDC but the pathology post lumpectomy showed ILC. I feel looking back that if the initial biopsy had shown ILC, I would have discussed the mastectomy option. So can biopsies be more accurate and specific on the type of breast cancer snd variation within the type? Will liquid biopsies be able to make these distinctions or just show cancer or no cancer?

Dx 10/2014, ILC, Left, 1cm, Stage IB, Grade 2, 0/1 nodes, ER+/PR+, HER2- Surgery 10/15/2014 Lumpectomy: Left; Lymph node removal: Left, Sentinel Hormonal Therapy 11/11/2014 Arimidex (anastrozole) Radiation Therapy 12/16/2014 Whole-breast: Breast

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