First International ILC Symposium | Sept 2016 | Pittsburgh, PA

I second that so much. Thank you so much Heather! I look forward to hearing more news on ILC...

Hi Astrid, this is from a prior post from Heather:

"If you are interested in participating in the Faces of ILC booklet to be given to all attendees at the 1st International Invasive Lobular Breast Cancer Symposium, please email be at hmhillier23@gmail.com

I will send everyone the questionnaire and ask that you complete and submit by September 1, 2016.

Please know that you can submit a photo of yourself or an image that represents you. You can also use your full name, first name, or a nickname.

Thank you, I look forward to hearing from everyone. Sincerely, Heather"

Also, on Aug 20 Heather posted that they'll be working to provide information from the conference after it's over. Not sure about an actual transcript but I know they do want to provide us info afterward.

MMSS, I was so honored to be asked to participate and Steffi has stressed from day one the importance of the patient perspective.  We have received so many compelling and moving stories and I'm confident that putting a face of ILC will resonate with these already dedicated researchers and clinicians.  

The response has been tremendous  demonstrating  the need for an ILC focused conference.

I look forward to meeting you and all of the survivors and co-survivors who are intent on making a difference.

Sincerely, Heather 

PS any and all questions can be sent to my personal email. 

Johanna, I am originally from Sudbury and my husband grew up in Toronto just north of Yonge and St Clair. Small world. My sister has had BC twice and treated at Womens College and Sunnybrook. Bewtween the two of us, we have 3 different types of BC

I will put send along your questions to the facilitator and hopefully we will see you in Pittsburgh. We have a researcher from Toronto participating as well.

Keep me posted on whether you are attending. Heather

PSl Haven't had a minute to pick the restaurant and haven't heard from many women yet. I'm busy with other details right now but will get to it in early September.

WndrWoman, I cannot answer that since I am not directly involved in Rachel's research. Where did you see that it scheduled for September 10th? I am only aware that the Estimated Primary Completion Date:October 2017 (Final data collection date for primary outcome measure).

My initial statement was that Rachel would be discussing/presenting her

"Trial of Endocrine Response in Women with Invasive Lobular Carcinoma" I don't believe I stated that she would be reporting on her final findings.

I'm unsure as to what to tell you at this point. If there was a contact name on the site you visited, then I would reach out to whomever that was. If you could send the link that stated a Sept 10 presentation, I'd appreciate it.

Sorry I couldn't be of more help. Heather

Thx John, I wasn't sure if that was what WnderWoman was referring to. LIke too many clinical trials, recruitment is always an issue and I'm sure Rachel will discuss as well. Heather

thanks so much Heather!

Yes, small world

Sorry I'm late to this discussion. I just found the site, thanks to John Smith. I hope I'm not too late for the Faces of ILC brochure and the questionnaire. I can't make the conference but I am hoping that much will be available online--videos of presentations, papers, questions and answers, contact info with researchers, etc.

I was fortunate to have found my ILC at age 60 during BSE in late 2014, while it was Stage 1A. grade 1. Previous mammograms had missed it, and my dense breasts didn't help. There was 0/1 lymph node involvement, ER/PR+, HER2neg, Ki67-10%. I had.Left side MX in Feb 2015, followed by Letrozole. No rads, no chemo. Currently NED.

I was treated at a major cancer center in TX, but I feel like they sent me home with little info about possible recurrence or even what to look for. It was only via my own research that I found out how sneaky ILC can be. My breast surgeon did not recommend bilat MX at the time, and I wish I'd asked for it now. Also, both my mother and her sister have had breast cancer (my aunt also had ovarian), and no one could tell me what if any link there is between us. My mother and I tested neg for BRCA 1 and 2,although I have a BRCA-2 polymorphism of unknown significance (n924I (2999a>T). Due to my Aunt's ovarian cancer, I consulted a geneticist, who gave me a 3% risk of developing ovarian cancer. Neither she nor my oncologist would recommend prophylactic Salpingo-Oopherectomy based on those findings, although I wish I could yank out all that plumbing at this point.

I struggle with the letrozole side effects (stiff and sore hands and feet... hot flashes constantly.... skyrocketing cholesterol levels). I'm on a statin now because of the choles. levels, which are causing further pain.

I worry that because the tumor was so close to my chest wall and nearest to an unreachable (surgically)sentinel lymph node, that my team could really not definitely say there was no lymph node involvement. I also worry what the heritability is of my ILC. Did I pass it along to my son? Why can't screening for this cancer go b

So my questions for researchers are these:

1. Why aren't women with single sided ILC (no matter what the stage/grade) given the recommendation to have bilateral MX, given the sneaky nature of its spread?

2. If the sentinel node nearest the ILC breast tumor is not located in the axilla-- but under the breastbone--what is the treatment recommendation since that node is not surgically accessible?

3. My oncologists didn't recommend further genetic testing for me (oncotype DX, etc.). What genetic testing is currently recommended for ILC patients, and what should I ask my doctors to do?

4. Is there a supplemental regimen that is recommended for ILC patients both for help staying cancer free AND for dealing with the side effects of AIs?

5. Can somebody please publish (or direct me to) a primer on understanding the complex research being done re: ILC? I don't have the background I need to understand endocrine resistance in regards to ILC (PI3K, ESR1, TGFβ, WNT4, etc), antigens/neoantigens and CAR-T in regards to immunotherapy and ILC, mutational load, and the "new biomarkers" (Androgen receptor (AR), and Prolactin receptor (PRLR). Some pts and advocates who have been at this longer than I have are speaking a language I need to learn.

6. What regular blood tests or imaging tests (and how often) are recommended for ILC survivors?

7. Does anyone know if there an oncologist in Texas that knows a lot about ILC?

Thanks!

Abby

Here is another question for the list. What questions should the oncologist ask the patient, and what tests should he/she order, to check for new metastasis sites, given that ILC can go to sites other than the usual ones, and that ILC may not look the same as IDC? (Peritoneum, reproductive organs, urinary tract, etc.) Please answer for both patients with early-stage and patients with metastatic disease.

Heather, are you still compiling a question list for the symposium?

Thank you.

Wndrwoman,  We need to secure permission from everyone to do so.  At this point, we are working feverishly on getting the booklet completed as well as finalizing all of the symposium details.  We are not entirely sure if we will be able to post the entire booklet but if you have participated we will be happy to mail you the completed booklet.  

To be honest,  we are all extremely pleased with the enthusiastic response we've received not only from patients but from researchers and clinicians participating in the symposium. It truly shows the desire and need for this focused effort.  With respect to posting any and all items, we will have a clearer picture after the symposium on what we will be able to post and what will not be posted.

I appreciate everyone's patience and understanding.  Navigating the '1st' is always a challenge and we want to ensure all of our 'i's" are dotted, our "t's" are crossed and everyone's requests are accommodated as best as possible.  Heather 

WndrWoman, although it would be interesting to see the Faces of ILC booklet, they really should not publish it online, because the contributors were asked to give their bios specifically for a booklet to be given to the researchers and doctors who will attend the symposium. I'm sure there are some who were willing to share their story for that purpose, who would not be ok with it being available online to a wide audience. With a certain amount of detail in the bio, even a pseudonym would not ensure privacy online.

Thanks, Heather. That is what I thought; I hope my explanation did not sound like I thought things would not be handled properly. I know you and the others involved are aware of the sensitive nature of this. So many of us here are thrilled to see this symposium becoming a reality, and know you all must be working very hard to make it happen.

Please take care of yourself!

Shetland, No not at all. Its best to put things out there to gain clarity. This is all sensitive information and I'm glad you raised your concerns. Thx Heather