Looking at Subpopulations In Metastatic Breast Cancer
Vital Options International presents Advocacy in Action: Metastatic Breast Cancer, bringing together the influential leaders of the cancer advocacy community to address core issues that impact metastatic breast cancer patients today.
Joining Selma Schimmel as co-moderators are Elyse Spatz Caplan, Director of Programs & Partnerships at Living Beyond Breast Cancer, Shirley Mertz, Board Member, Metastatic Breast Cancer Network, Maria Wetzel, a research advocate who works with the National Breast Cancer Coalition and Musa Mayer, an advanced breast cancer advocate who runs the website, AdvancedBC.org.
This video also features Ginny Mason, Executive Director, Inflammatory Breast Cancer Research Foundation.
Advocacy in Action at the 34th Annual CTRC-AACR San Antonio Breast Cancer Symposium was made possible by support from:
VIDEO TRANSCRIPT:
Selma Schimmel, Founder & CEO, Vital Options International:
There’s many of us that will live with cancer and have to coexist with this disease, and the idea that we can give a voice and now faces to the issues behind living with metastatic breast cancer is the goal of Advocacy In Action.
Often people talk about metastatic disease in terms of young woman, of African American women, Jewish women, women with inflammatory breast cancer… is it really age? Is it ethnicity? Should we be focusing on people within these populations based on the presence or lack of biomarkers that fuel most cancers?
Musa Mayer, Advanced Breast Cancer Advocate, AdvancedBC.org
It’s an interesting question- of course people are looking at… researchers, epidemiologists look at cancer mortality by different populations very often. And in fact, there is a study being presented at this conference that shows a higher mortality from breast cancer in Latina populations. And we’ve certainly seen that among African American populations over time.
For many women with triple negative metastatic breast cancer, they are dealing with a very rapidly, very progressive, and very deadly form of the disease and it is particularly likely to metastasize to the brain. And so far, although there are some real glimmers of hope with a class of drugs called the PARP inhibitors, we haven’t made any real breakthroughs beyond the standard chemotherapy drugs, which this type, subtype of breast cancer is often very sensitive to. And there has been a real focus in this area; that is truly important. I think HER-2 positive breast cancer, much more progress has been made in that area, and this is also a very rapidly aggressive and used to be a very deadly form of breast cancer. And the progress in HER-2 positive disease leads me to have hope when researchers finally understand more fully the different subtypes of triple negative disease, which is not after all a single disease because it is defined by what it is not, rather than what it is; that still remains to be clarified. But I think there is real hope that targeted therapies will do for triple negative disease what they have been able to do in HER-2 positive disease. And likewise, for hormone receptor sensitive disease, I think we are beginning to see at this conference some more further progress building on what has happened before with overcoming resistance to hormone therapies. So I find that very exciting and promising.
Selma Schimmel, Founder & CEO, Vital Options International:
Inflammatory breast cancer, triple negative… there may be a comment relevant that you want to bring up to support what we are talking about right now.
Ginny Mason, Executive Director, Inflammatory Breast Cancer Research Foundation:
While I was diagnosed in 1994 I’m like Maria, I’ve always felt it is going to happen at some point and I think most inflammatory breast cancer people feel that way. And so, we fall into that population that feels metastatic even when we may not officially be stage 4. And it’s again, it’s like triple negative- I don’t think it is one disease. Inflammatory breast cancer is, obviously, it’s a very heterogeneous- we’re not all HER-2 over expressers, we’re not all ER-negative or ER-positive; we are this interesting mix. Then there are people like me who are still alive and those with very aggressive, progressive disease.
Selma Schimmel, Founder & CEO, Vital Options International:
There are a lot of us that have what we consider the common cancers but must have rare forms of more common cancers. And it was frustrating for me, and the more I hear this I’m thinking, “Yes, yes, yes.” We are forgetting ethnic subgroups, there are subgroups of our clinical disease that I feel maybe are falling through the cracks and many of us represent rare components of these cancers that we hear a lot about.
I want to thank each of you and hope that we walk away, we cannot problem solve in this period of time but what we can do is create tangible arguments, common language and get us all focused, so when we walk away with this Advocacy in Action it’s a call to action- whether you’re an advocate, whether you’re a researcher, whether you come out of industry or if you’re an oncologist that really has to learn how to communicate better with patients facing metastatic disease.
END OF VIDEO