First International ILC Symposium | Sept 2016 | Pittsburgh, PA

Lisa123456, Thank you for providing your list of questions. I am compiling the list and my intention is to not only present the questions during the Q&A but also listing them in the Faces Of ILC booklet. So please keep them coming. Heather

Thank you, Heather!

I honestly don't feel comfortable releasing anything at this moment because it has not been approved. A few of the questions will ask for your diagnosis, age at diagnosis, how your ILC was diagnosed and treatment plan. So some a number will be concrete and a number of others open ended. I hope you understand. You can also be as anonymous or as open as you care to be. Heather

Here are some ILC questions for our list:

1. There are recent papers identifying subtypes of ILC, such as immune-related and hormone-related. Is there a way for patients and doctors to know or surmise what subtype they are dealing with?

http://www.nature.com/articles/srep18517

http://www.nature.com/ncomms/2016/160510/ncomms114...

2. Should oncologists view a pathology finding of isolated tumor cells in the sentinel node differently for ILC? Might ITCs actually represent micrometastases or macrometastases due to the single-file pattern ILC can have? If so, this is not well-known.

http://www.thebreastonline.com/article/S0960-9776(10)00054-8/pdf

3. Should CDK 4/6 inhibitors (e.g. palbociclib/Ibrance) be expected to work on tumors with Cdh1 loss?

http://www.nature.com/ncomms/2015/150106/ncomms690...

4. Is Oncotype DX valid for premenopausal ILC?

5. Are there any medical oncologists at Pittsburgh or elsewhere with particular knowledge of ILC research and clinical experience who can offer ILC-specific consultations and opinions? Can they offer more than a good oncologist who does not specialize in ILC?

6. What are the best treatments for metastatic ILC?

Shetland Pony - Thank you so much for taking the time to let us know about your experience with Taxol. I do believe that we make the best decisions that we can with the information we have at a given time, I just always wondered about the Taxol. It's so great to hear that you had such an amazing response to Taxol. I see that you're getting Ibrance and Letrozole now. Do you mind if I ask if you were started on it for progression or as maintenance? I wish you continued response to your treatments!

Shetland, I find that information very interesting and hopeful. Since I too am ILC and HER - I often think it shrinks my options. I plan to ask my Onc about Taxol when the time is right.

For patient survivors attending the ILC Symposium, below are links to a few local spots varying in price but all close to the area of the symposium. If anyone is interested in having dinner together following the Q&A and given the response, I will make a reservations as needed. There are numerous restaurants in the area and downtown, Lawrenceville and Mt Washington areas however transportation would be necessary. Heather

http://brgrpgh.com/
http://dinette-pgh.com/
http://www.spoonpgh.com/eat.php
http://www.paris66bistro.com/#!french-restaurant-menu/c131n
http://www.primantibros.com/

Heather

ShetlandPony, thank you for the links to the papers. I am not a scientist but have read so many papers over the last few years that I can generally grasp the biggest takeaways from them. In the first nature paper, I was struck by the authors' references to limited available quality ILC cell lines.

So a question for the conference: what is/can be done to acquire those cell lines?

(Personal editorial comment: and why the h*ll aren't these available/why haven't the been?)

I also am very glad to read that you have been taken to NED status by taxol, and that you remain there via other drugs. I had taxotere with A and C. Instant and permanent menopause for me, too.

hmh23, thank you for all your good work. I've coordinated several conferences and I know how much work they are. I also appreciate the tip about Dr. Jankowitz's presentation.

Hi Heather,

I love reading about the preparations for the symposium! I have one sort of big picture question. There are lots of existing databases on women with breast cancer, such as SEER discussed recently in this article

http://www.nature.com/articles/npjbcancer201617#t1

I read through these article and zero in on the table of descriptive statistics. Rarely are the data separated IDC vs ILC. Researchers differentiate between tunor size, grade, age of patient, node status, race, but not IDC v ILC. I would think that this information is just sitting in the databases and waiting to be mined. Or do the researchers not segregate the data along IDC v ILC because there are no meaningful differences? (I think we are learning that is not the case, but why has it taken so long?)

Dear Jojo,

In the past researchers thought they were the same and only in recent years have people come to realize they are actually biological and clinical differences.  Hopefully the symposium will significantly contribute to learning more about our disease with a goal in mind of developing ILC -specific treatments.  

As to why it has taken so long, I believe there are a number of reasons including funding, technology to mine genomic differences. lack of models etc.  I know when I had my mastectomy (Feb2010) done I was asked to contribute a sample to our lab for ongoing ILC research projects and I believe we were fairly progressive at that time.

I'm so excited about the researchers and clinicians.that are attending.  The response has been amazing.  I hope I've answered your questions.  Sincerely. Heather

just curious, but how are tissues made available for research? I had a fairly large ILC tumor (5X4 cm) that, as far as I know, is just sitting there in the pathology lab archives. Is this tissue automatically deposited into a tissue bank for research or do I have to ask for this? Is the tissue still mine to do with as I see fit or does it now belong to the pathology lab? I know that some of the tissue will need to be reserved in case tests such as the BCI are needed to guide my treatment in the future, but it seems that it's big enough I should be able to donate some to research.

I have a question about measuring ILC. ILC tends to grow in strings/streaks because the cells don't clump together. So imagine a 1 cm ILC tumor compared to a 1 cm IDC tumor. Wouldn't the ILC tumor be comprised of far fewer cells (less mass) than the IDC tumor? We often hear of women with very large ILC tumors 5+ cm, but wouldn't an IDC 5+ cm tumor have much larger mass, indicating much more cancer? Should ILC and IDC be using the same staging system based on measurement of the largest dimension? I realize that measuring the mass of the tumor may not be practical because of surrounding tissue, but simply measuring the longest dimension seems to be a very crude measurement of the amount of cancer.

I am so tired of always being worried about mets/recurrence not being caught because I don't trust all the medical staff to know how different ILC can show. I get imaging done, am told it's clear, but still worry because I don't trust it! It's causing me so much anxiety. I hope I get to go to the symposium and ask about this.

Msparki, what similarity with our diagnoses! Feel like mine could easily have become identical to yours. Diagnosis was two weeks before turning 52.

Yours - "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. "

Mine - Tumor was PILC 1.8cm, 0/2 nodes, Stage 1, grade 2, ER/PR+ HR2nu-. Five other spots found during Ultrasound turned out to be ALH and ADH on the same breast as the ILC. Other breast had ADH and PASH. No chemo or radiation necessary either.

In February I'll be Five years out from the BMX.

Sally

You're amazing, Heather. On behalf of all of us with ILC histories, we're very grateful for the valuable information you've provided and will provide.