How to Encourage More Tissue Collection for Metastatic Breast Cancer Research
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. 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.
Musa Mayer, Advanced Breast Cancer Advocate, AdvancedBC.org
Yes, indeed.
Selma Schimmel, Founder & CEO, Vital Options International:
Talk to us about what we need, why the obstacles, your vision…
Musa Mayer, Advanced Breast Cancer Advocate, AdvancedBC.org
If we knew precisely what we needed to do, obviously, we would have been there long ago. But there are some issues that have become increasingly clear as we talk about the allocation of research funding and the focus of the research community. And that includes basic science, the laboratory science, that is done prior to research in women, in people, and that is- a lot of it has to do with as basic an issue as where the tissue comes from, where the samples come from, that researchers use.
I was shocked to discover a number of years ago that most breast cancer research is done using primary breast cancer tissue. And you can see, in a way, why that persists- because every woman diagnosed with breast cancer has a biopsy. So that tissue is there, there are repositories for it. But until very recently, not every woman diagnosed with metastatic disease has a biopsy either to confirm her metastasis or simply to look at whether the markers for hormone sensitivity and HER-2 over-expression have changed since the primary diagnosis. So it’s become really clear from a variety of researchers that it’s important to do so for the purpose of treatment planning. But where we haven’t gotten to yet is actually getting those metastatic tissues into the hands of the researchers who can make discoveries and develop insights into potential treatments based on those tissues.
I’ve been working for a number of years with a consortium of scientists and clinicians to study the very difficult problem of brain metastasis in breast cancer, for which there is a tremendous scarcity of tissue. And I’m acutely aware of how the lack of tissue can hold back the progress of research in this area.
Shirley Mertz, Board Member, Metastatic Breast Cancer Network:
I think we have to begin with the viewpoint of the clinicians who have said for many, many years, “well, okay this woman has been diagnosed with metastatic disease. It now is a systemic issue- we have to treat it systemically, so why would we put her through a biopsy or why would we ask her for tissue?” It’s only been recent that, first of all, there is discussion now, we just had, the Metastatic Breast Cancer Network had a conference at John’s Hopkins where there was a whole presentation about the use of surgery in soft tissue for metastatic disease in liver mets, for example; the fact that in some cases the metastatic tumors are removed if they are not great in number and if you fit certain parameters.
There is a study now going on at Northwestern University in Chicago where trying to figure out if the removal of a primary tumor in a metastatic woman would help with or prolong overall survival. Because in cases where a woman presents with metastatic disease for the first time, and as her initial diagnosis – if she has a tumor in her breast and it’s also disseminated to other parts of her body, it’s often left alone. And recently researchers are saying, “well, maybe if that was taken out, this idea that metastatic tumors create more metastatic tumors.”
So, what we’re hoping as a metastatic organization that I work with is, we’re trying to get the word out to patients to say, “talk to your doctor about your willingness to contribute your tissue. That, is there a place, if you needed my tissue for further research I am here to do it.” And I think doctors, in one of the consortiums that I work with, we keep saying to them, “don’t assume the answer is no. Ask.”
And, in fact, we’re encouraging that in cases of clinical trials, that there be a requirement, even with metastatic patients, that if you are going to participate in the trial you have to give tissue at the beginning, perhaps some sample in the middle and then at the end.
The whole idea is we need to improve the research for this disease.
Musa Mayer, Advanced Breast Cancer Advocate, AdvancedBC.org
I think Ginny has done some phenomenal advocacy in this area and I’d love it if she could share it with us.
Ginny Mason, Executive Director, Inflammatory Breast Cancer Research Foundation
Our organization felt strongly- we heard from the research community that what was inhibiting progress was access to human tissue. It’s one thing to study cell lines- those are a model. It’s another to study a xenograft mass; that is another model. But that’s not human. And you lose those unique characteristics, those moleculars- you set the molecular pathology. It’s different from patient to patient. And to really look at those tissues, and then have the clinical data that goes with it.
Why is there a person, like myself, who probably has good tumor suppressor genes or metastasis suppressor genes and the patient who is diagnosed, and within a very short period of time, doesn’t survive the disease? And by studying those kinds of tissues in a well annotated, well IRD-controlled tissue bank and allowing researchers access to that can really change the course of the disease.
Maria Wetzel, Breast Cancer Research Advocate, National Breast Cancer Coalition:
I think if we could find one avenue of research that, boy I don’t know if I’ve ever heard of it, is studying the disease that does not recur. Why are you still alive? And it’s not just in inflammatory breast cancer; it’s with other breast cancers that look very aggressive. Maybe they had a lot of positive nodes and it never recurred. So I think we could probably learn, but of course, we need tissue. And we need it at different stages.
Selma Schimmel, Founder & CEO, Vital Options International:
Patients need to understand that they own that tissue; it’s their body. And that the field of how we even analyze tissue, patients, very few of them still, will say I want a copy of my pathology report. And today, pathology, if you limit your pathology to a microscope in an era of molecular pathology, all of us should be demanding that our tissue is also analyzed and genotyped and using current molecular pathology standards.
And so, the learning curve is still, it’s so great what is ahead of us and really inspiring patients to take responsibility and demand that their tissue is utilized.
END OF VIDEO