Research on ILC

Gracejoy
Gracejoy Member Posts: 48
edited November 2016 in ILC (Invasive Lobular Carcinoma)

In my last checkup with my BC surgeon, I had a small discussion about how ILC is a distinct subtype yet still treated as IDC by doctors. I told him that ILC, in general, doesn't respond well to chemotherapy and Tamoxifen. He told me immunotherapy is the way to go for ILC. I told him not much research is done worldwide on ILC as it is 15 % of all the BCs. My surgeon is involved in research projects with the universities affiliated with. His department receives lots of donations yearly and fund the research projects of researchers therefore Doctors have a say as to what projects should go forward. He told me the research labs he is collaborating with, they are seeing great response to immunotherapy in triple negative BC. I asked him if he can request same immunotherapy resarch be done on ILC and he said yes I will. I realized how easy to get researchers work on ILC which is widely ignored. I think as patients we all have a BC surgeon we can make some noise and request more research done on ILC. I encourage everyone, next time when you visit your breast cancer surgeon ask them if they can get researchers to do more research on ILC to understand the molecular mechanism and in the future design better targeted therapy. Thank you for listening.

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  • Hersister2016
    Hersister2016 Member Posts: 7
    edited November 2016

    Thank you for posting this GraceJoy.

    I have a sister who has been recently diagnosed late June/early July of this year.

    In regards to immunotherapy, what specifically should my sister be asking of her Oncologist. She her 1st appt today but I would like to give her some questions to put forth at her appts.

    Thank you,

    Rosa



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  • Gracejoy
    Gracejoy Member Posts: 48
    edited November 2016

    Hi Rosa,

    Your sister is lucky to have you at her side at these tough times. I would speak with her Breast Cancer Surgeon not Medical Oncologist. Because Breast Cancer cliniques are the ones that raise money from yearly fund raising events. And then a good chunk of these donations are distributed among researchers for breast cancer research among the University research centers which they are affiliated with. I say, first of all, get to know your Surgeon well, by asking questions, such as whether they are involved in research themselves or they are collaborating with breast cancer research labs. If the answer is yes you could ask if they can organize to get more research done on ILC subtype since not much effective treatment is known about it so far. There is a big difference in terms of research effort put in, for example there are only 2 or 3 cell lines are available from ILC subtype in the whole world to do research on yet there are at least 50 or more cell lines are available for IDC research. Most of the labs in the world are working on IDC or triple negative form bec they are more aggressive compare to ILC. For researchers, It is very easy to make more ILC cell lines. Surgeon need to give a piece of fresh tissue from ILC patient to research labs. These labs have all the resources needed to generate more cell lines and work on them. I am lucky because my breast cancer Surgeon is the director of the Breast Clinique and working with one of the biggest research labs devoted to breast cancer research therefore everything is under his fingertips. But all the surgeons work in a team and even if they are not involved in research or decision making they can influence each other into getting more research done for ILC. So you just speak with your surgeon and start the topic of more research needs to be done for ILC and what can he or she can do to advance it further . That's all. They already know what to needs to be done and how to get research go forward.

    Best wishes.

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