The Need For More Metastatic Breast Cancer Specific Clinical Trials
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.
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. Elyse Spatz Caplan is the Director of Programs and Partnerships at Living Beyond Breast Cancer. And I want to thank you again for really being a great partner to this project.
Elyse Spatz Caplan, Director, Programs & Partnerships, Living Beyond Breast Cancer:
Thanks so much, Selma. It’s really a pleasure to be here. This issue, metastatic breast cancer, is critically important. It’s what we hear at Living Beyond Breast Cancer day in and day out and so, I think it’s really timely and relevant and I’m delighted to be part of the program.
Musa Mayer is author of the first Guide on Metastatic Breast Cancer, has been advocating for more than 16 years on behalf of the metastatic breast cancer community.
Selma Schimmel, Founder & CEO, Vital Options International:
The core of what we really need here is research. Talk to us about what we need, why the obstacles, your vision…
Musa Mayer, Advanced Breast Cancer Advocate, AdvancedBC.org
You know, I’ve been saying for years we’re not really researching metastatic breast cancer. And the push back I often get is, “but of course we are, every new drug in breast cancer is tested in metastatic breast cancer patients.” To which I say, “yes, that’s true; but it’s not really designed for metastatic breast cancer patients.” For the most part, what we see is the drugs that are initially tested in metastatic disease go on to really save lives in early breast cancer. In part, that is the nature of the disease- that metastatic breast cancer is much more difficult to treat, as you’ve already heard. It is responsible for almost all deaths in breast cancer. But there has been, until quite recently, a real lack of research focus on specific issues in metastasis. For example, tumor dormancy- why does, in the case of both Maria and Shirley, what was going on during all those years where there was no evidence of that tumor? We don’t really understand what puts… obviously, there were remaining tumor cells in their bodies, but what woke them up? What is that process that researchers call tumor dormancy? We don’t know a lot about it. We don’t know how to measure it. We don’t know how to look for it. And we need these kinds of research initiative.
Selma Schimmel, Founder & CEO, Vital Options International:
We talked for a moment about dormant cells and just, the importance of trials- and your exact words were, “trials are focused on why they wake up and metastasize…” Just expand on that a bit.
Maria Wetzel, Breast Cancer Research Advocate, National Breast Cancer Coalition:
It would be hard to do a trial on that but we definitely need more research. We don’t know if it is the tumor microenvironment. We don’t know if it’s something in the cell itself or outside influences somehow, if it is organ specific- do they act differently in different organs?
So the whole tumor dormancy thing, as was brought up… first of all, they are difficult to see, to image and to find specific, in a specific organ, in a specific place. So there has been very, very little organ specific metastatic research done. I mean, there is not a whole lot to begin with. I think I’ve heard maybe 2% to 5% of cancer research is about metastases; so we have a real long ways to go. And yet, metastatic disease is the disease that kills people.
Musa Mayer, Advanced Breast Cancer Advocate, AdvancedBC.org
When we look at the results of clinical trials we are looking at end points- in other words, that which is measured by the clinical trial. And usually, in the trials you see here in San Antonio, you see progression free survival. Maybe, if you’re lucky, you see overall survival. But it is important to be aware of what progression free survival actually represents. It has to do with a growth of a tumor- that’s what response rate is too, that’s tumor shrinkage. Now, when you’re talking about dormancy, neither… dormancy is not captured by these measures- in other words, a tumor that just stays the way it is, is not captured by these measures. And until we really start focusing in this area I don’t think we are going to make the kind of progress we need to.
Shirley Mertz, Board Member, Metastatic Breast Cancer Network:
I have made a decision and I’m really going to try to work with early stage breast cancer groups to help them understand the importance of research about the causes of metastasis to their long-term survival. I was, as I indicated, an early stage survivor at one time. I… you know, you worry about recurrence. If early stage people could see the importance and the difference that understanding the process of metastasis would make to their future, I think we would get more people to demand that that type of specific research be done beyond the percentage that Maria mentioned of 5% of all metastatic research, so that everyone would benefit. I mean, it is in everyone’s interest. We just tend to, because of our own situation, focus on what we have rather than joining forces.
END OF VIDEO