The Group Room » Elyse Spatz Caplan : The Group Room : Facilitating a Global Cancer Dialogue

Advocacy In Action: How Breast Cancer Advocates Talk About Personalized Medicine To Patients

thegrouproom — Sun, 03 Mar 2013 17:37:22 +0000

Vital Options International presents Advocacy in Action bringing together influential leaders of the cancer advocacy community to address: Personalized Medicine: What it means, its relevance for patients, collection of tissue specimens, and a discussion on metastatic breast cancer in young women. Part 1 of 4.

Joining Vital Options Founder and CEO, Selma Schimmel, as co-hosts of the 3rd Annual Advocacy in Action Forum — Elyse Spatz Caplan (Director, Programs & Partnerships, Living Beyond Breast Cancer), Ginny Mason (Executive Director, Inflammatory Breast Cancer Research Foundation), Shirley Mertz (Board Member – Metastatic Breast Cancer Network MBCN), CJ “Dian” Corneliussen-James (Executive Director, METAvivor).

Dr. Larry Norton is Deputy Physician-In-Chief For Breast Cancer Programs and the Medical Director of the Evelyn H. Lauder Breast Center at Memorial Sloan-Kettering Cancer Center (MSKCC). He is the first incumbent of the Norna S. Sarofim Chair in Clinical Oncology at MSKCC and recipient of the American Society of Clinical Oncology’s 2004 David A. Karnofsky Memorial Award.

Advocacy and educational support provided in part by:

Advocacy In Action: How Advocates Can Help With Tissue Collection In Breast Cancer

thegrouproom — Sun, 03 Mar 2013 17:35:38 +0000

Advocacy and educational support provided in part by:

Advocacy In Action: How Can Advocates Help With Doctor-Patient Communication?

thegrouproom — Sun, 03 Mar 2013 17:33:18 +0000

Advocacy and educational support provided in part by:

Advocacy In Action: Issues For Young Women With Metastatic Breast Cancer

thegrouproom — Sun, 03 Mar 2013 17:28:48 +0000

Advocacy and educational support provided in part by:

Advocate in Action: Elyse Spatz Caplan – Living Beyond Breast Cancer

thegrouproom — Sat, 17 Mar 2012 02:34:01 +0000

Elyse Spatz Caplan, Director of Programs and Partnerships with Living Beyond Breast Cancer, discusses the organization in depth including their mission, the launch of the new website at LBBC.org and all of the various ways in which they disseminate information to women living with and beyond breast cancer.

For more information on Living Beyond Breast Cancer, please visit: www.LBBC.org

VIDEO TRANSCRIPT:

Selma Schimmel, Founder & CEO, Vital Options International

I’m very pleased to be joined now by my friend and colleague, Elyse Spatz Caplan, who’s the Director of Programs and Partnerships at Living Beyond Breast Cancer, LBBC.org. Hello Elyse.

Elyse Spatz Caplan, Director, Programs & Partnerships, Living Beyond Breast Cancer

Hi, Selma.

Selma Schimmel:

Let’s talk about in detail, the organization the projects that you’re involved with….

Elyse Spatz Caplan:

Living Beyond Breast Cancer was founded twenty years ago, in 1991, which ironically was the same year I was diagnosed with breast cancer, and we are celebrating our 20^th anniversary this year.

We develop educational programs in a lot of different formats understanding that people learn in different ways, people have different preferences for how they get their information and support, so we’re not delivering the breast cancer information in just one way.

We’re a large, physical conferences that happen three times a year are great for women that want to get up close and personal, meet with the experts, hear the latest medical quality of life updates but also network with their peers for that vital peer support from other survivors. Our teleconferences are wonderful for people all over the country and all over the world because you can do it from the privacy of your home, your office, your cell phone, you could dial onto a toll free number or log online; all of our programs, I want to say, are audio-recorded and the podcasts go up on our website, LBBC.org. So that information is available year-round for the woman that’s diagnosed tomorrow or next week that may want that information but couldn’t attend the program or didn’t know about the program.

We offer publications for people who like to read, who like to get their information in writing so we have newsletters that come out three times a year, and we have a series of guides we call our ‘understanding guides’, we have a series of titles in the early breast cancer setting and a series we’re very proud of in the metastatic breast cancer setting, so that’s really good for the people that like to read. All of these publications are available as PDF on our website, LBBC.org, so people can access them or they can order them from our website, also for free.

And we have peer support on a toll-free survivor’s helpline for women that really want to talk privately to another woman who’s walked in their shoes who gets it, and we have a pretty sophisticated matching service for that. You could get the volunteer on the phone who could give you that vital support and help a woman formulate great questions to take back to their health care team, so they can make informed decisions, or if somebody’s having a particular surgical procedure or particular treatment, or is a certain age in life or phase of life that can request to try to match to a volunteer who has a similar experience.

Caregivers are also a very important audience for us, and we’re always encouraging women to bring their loved ones, their providers, their family members, their friends, their colleagues to our programs, or to listen in and obtain information because you and I both know it’s oftentimes the supporters that are in positions to be gathering information, and that’s a helpful role that caregivers can play. So we’re very inclusive of caregivers, and we want to be attentive to the needs that they have so they can maintain that endurance that they need to maintain their own personal life but also support their loved ones.

Selma Schimmel:

What about young women with breast cancer?

Elyse Spatz Caplan:

To talk about young women, I’ll step back and say ‘one of our core philosophies and values in Living Beyond Breast Cancer, is to make sure we’re filling in gaps in information and support, because as we talked about all the time, breast cancer is not just one disease, it’s many diseases. And when it affects people at different phases of life or different stages of diagnosis the information and support needs to be tailored. So 15 years ago, in 1996, we identified young women as an underserved group. In other words while we know that the majority of women diagnosed with breast cancer are middle-aged or older, there are younger women – you and I were young women when we were diagnosed – and so even though it’s a smaller percent overall they need that tailored information so it’s relevant.

So we created a conference, specifically for young women, 12 years ago, to specifically give young women a place to come and meet other young women, for that vital peer support but also to hear from experts, and that started as a one-day conference in 2001, and has moved to a weekend-long conference, and we partner with Young Survival Coalition on that conference so we can reach even more young women affected by breast cancer.

Selma Schimmel:

Given that there are so many breast cancer groups, what do you think is a fundamental difference with Living Beyond Breast Cancer as far as the mission of the organization or the way it’s structured, or the way you do your outreach to patients?

Elyse Spatz Caplan:

One of the ways we’re different is the sort of the way that I’d like to answer that question. We are an education and support organization and our mission is very concise: to empower all women affected by breast cancer, to live as long as possible with the best quality of life. So we tie everything back to that mission – it’s education, empowerment, and quality of life whether newly diagnosed, or worried about a diagnosis, in treatment, post-treatment, years beyond or metastatic. Quality of life is subjective, it’s whatever it is to that individual, and so we want to make sure that what we’re delivering always has that quality of life endpoint as part of our program, but also we’re different from other groups because we’re disseminating the information in multiple formats and many of the groups do it in one or two, or fewer ways.

Their missions are tied to either raising dollars for research or giving peer support, or research advocacy. There’s so many different areas that other groups may also take on as their primary mission but we are trying to stick to our mission of education and support, and deliver it in multiple ways.

Selma Schimmel:

So speaking of education for me, one of the most important things that you do is the translation of research, and putting it into a language that’s easier for the public to understand.

Elyse Spatz Caplan:

So we often will take a clinical trial as an example, we’ll talk about the study design which is facts, and then we’ll translate at the end, like what does it mean for you? And we try to really get that message out of…what is all this complicated medical information actually mean? And we hope and we think that by translating for what it means for you, it’s something you can digest and process, and also share with your care providers or your loved ones when you’re trying to educate them about some decisions you’re making or concerns that you may have.

Selma Schimmel:

I want to thank you again for really working so closely with Vital Options this year to enhance our outreach to advocates.

Elyse Spatz Caplan:

It is my pleasure, Selma.

Selma Schimmel:

Personable person…

Elyse Spatz Caplan:

Thank you.

Selma Schimmel:

….and smart lady that you are.

Elyse Spatz Caplan:

Thank you so much.

Selma Schimmel:

Elyse Spatz Caplan, Director of Programs and Partnerships for Living Beyond Breast Cancer, LBBC.org.

Elyse Spatz Caplan:

Thank you.

END OF VIDEO

Advocacy in Action: Metastatic Breast Cancer

thegrouproom — Thu, 12 Jan 2012 18:02:44 +0000

Vital Options International presents Advocacy in Action: Metastatic Breast Cancer, bringing together the influential leaders of the metastatic breast cancer advocacy community to address core issues that impact these cancer patients today.

Considering metastatic breast cancer is by far the leading cause of breast cancer mortality, we discovered the quality video content in this area to be lacking, so we hope you will find this series useful for your patients!

In this series, we meet two women living with metastatic breast cancer (Shirley Mertz and Maria Wetzel), discuss the meaning of the word survivor to the metastatic breast cancer patient. We also delve into research and the need for more metastatic breast cancer specific research, the lack of tissue and how we can begin improve it, the need for evidence-based treatment guidelines, sub-populations, access to care, doctor communications, helping broader organizations reach the metastatic patient and our most animated discussion — Raising Awareness for Metastatic Breast Cancer Amidst All the PINK!

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:

What Does the Word Survivor Really Mean for the Metastatic Breast Cancer Patient?

thegrouproom — Thu, 12 Jan 2012 12:20:50 +0000

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. What does the word ‘Survivor’ really mean for a metastatic breast cancer patient?

Maria Wetzel, Breast Cancer Research Advocate, National Breast Cancer Coalition:

I think it means different things to different people and it’s a word that I’ve never been comfortable with even after my primary diagnosis. People would say, “I’m a breast cancer survivor of how many years…” And I would always say, “I was diagnosed in 1996.” It’s, I think the word is a very loaded word. And we can argue semantics, and we do in the metastatic community- there are certain buzz words that really get people going and it’s probably not worthwhile because I finally learned you have to think of what people intend to say rather than the exact word of how they say it. So I don’t really have a problem with other people using the word, it’s just something that I don’t use. And I think there are a lot of definitions for it, but to me, you have lived through something that is in the past. I never felt that way about, even after my primary diagnosis and I certainly don’t feel that way now, because I don’t think I will survive this disease, or I know I won’t. So that’s what… that’s my problem with the word. I understand what people say when they use the word. And there are a lot of people with metastatic disease that do use the word.

Shirley Mertz, Board Member, Metastatic Breast Cancer Network:

I will survive until I take my last breath and then you can say, “she no longer survives, she’s dead because I am living.”

But I agree, and I respect. I agree totally with Maria, it’s not worth really a lot of discussion. There are so many more important issues to worry about.

Elyse Spatz Caplan, Director, Programs & Partnerships, Living Beyond Breast Cancer:

What we’ve heard over and over at Living Beyond Breast Cancer is, this word is very charged and it is about semantics and semantics can be important. As, I think you had previously said, it’s not what we say but how we say it. But we also have to be respectful and open that everybody has different interpretations. So if I interpret it a certain way that may feel right or works for me; it doesn’t necessarily mean it works for you or the next person. So I think as long as there is that balance of whatever language or word helps us get through the day- as you said, Shirley, you’re surviving until the last breath. You’re living. That works for you. But we definitely hear, over and over, different words; whether its thriver, survivor, or a lot of push back on the term, I do think it is prevalent, it is out there and it is part of discussion.

Musa Mayer, Advanced Breast Cancer Advocate, AdvancedBC.org

There is another word that definitely strikes a note with many metastatic patients whom I talk with, and that is the word ‘chronic’ when it is used to applied metastatic breast cancer. I think for many people, and in fact there was at this meeting, a whole session on metastatic breast cancer as a chronic disease. And I think for the same reason that survivor is difficult, the word chronic is difficult because in most people’s minds it implies a long time course and an entirely manageable disease. And for many woman, and most women with metastatic breast cancer, that is not really the course of the disease. And I applaud you in this panel today for presenting a variety of faces of breast cancer- someone who is no evidence of disease and really doing well, and someone who is actively struggling now in the moment. Because this really is the face of metastatic disease as we know it today.

Selma Schimmel, Founder & CEO, Vital Options International:

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 communicate better with patients facing metastatic disease.

END OF VIDEO

The Need For More Metastatic Breast Cancer Specific Clinical Trials

thegrouproom — Thu, 12 Jan 2012 12:18:33 +0000

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.

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

How to Encourage More Tissue Collection for Metastatic Breast Cancer Research

thegrouproom — Thu, 12 Jan 2012 12:16:20 +0000

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:

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

The Need For Evidence Based Treatment Guidelines for Metastatic Breast Cancer

thegrouproom — Thu, 12 Jan 2012 12:14:18 +0000

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:

The need for evidence based treatment guidelines: 80-85% of patients are treated in the community. We wish also in addition to the great community of medicine that is out there that when diagnosed, that one would get their second opinion, get to an academic center, understand what your clinical options are, research options, clinical trials… that you may not get to hear about necessarily in the community.

So, Musa, let’s talk about why is there a need for evidence based treatment guidelines.

Musa Mayer, Advanced Breast Cancer Advocate, AdvancedBC.org

There are none for metastatic breast cancer and there have been for many years for early stage breast cancer. In part, that is because of the large clinical trials that have been done to establish the best treatments for early stage breast cancer. Of course it is always a work in progress, but it is also a function of the fact that metastatic breast cancer is far more complex to treat and treatment is far more individualized, which makes the process of drawing up guidelines difficult.

But a group of oncologists in Europe actually, got together and had been working for a number of years to begin the process of drawing up guidelines and just held their first conference in Lisbon, Portugal in November of 2011 to try to start gathering together a group of experts to try to agree on consensus guidelines for the treatment of metastatic breast cancer that then can be used around the world and in community oncology practices to guide best treatment practices.

This is really critical because, as every woman who is in contact with other women dealing with the disease knows, treatment recommendations are all over the map. I’m part of a large online community called BCMETS where there are about 1700 people living with metastatic breast cancer and I am always floored by how different the recommendations are for treatment at different stages of the disease. And, also how disconcerting it is for a woman with metastatic breast cancer to get a second opinion or a third opinion because they will so often only confuse the situation.

So, I think guidelines; and we sat there in this large panel discussion in Lisbon and voted on about 50 questions- sort of fundamental issues that could be agreed upon that there is current evidence for. And it is important that they be based on evidence as much as possible, as much as the current evidence permits. But to give an example, the issue that we talked about, that we keep coming back to of getting tissue, simply to biopsy metastatic breast cancer whenever it occurs; for most women it is at recurrence. This is because, for a certain percentage of patients, tumor markers change over time and that affects treatment decisions; so biopsies ought to be according to the new consensus guidelines that will come out sometime in 2012, every metastatic patient, if it is feasible – sometimes it is not because of anatomically where the metastasis is – ought to expect to have her metastasis biopsied and treatment planned accordingly.

And there are many areas that have to do with not so much what research supports, but fundamental humanistic values like providing good palliative care from the initiation of metastatic disease, from first diagnosis- patients should have the right to get all of their needs addressed by a multidisciplinary team. Now, this is not always possible in every treatment setting, as we know, but it is the role of guidelines to sort of set forth what optimal care really ought to be.

Elyse Spatz Caplan, Director, Programs & Partnerships, Living Beyond Breast Cancer:

The medical guidelines are one benchmark of critical importance. But also, you touched on palliative care- it’s the quality of life measures and guidelines also, so we need to do that at the same time and value.

And I am particularly touched by your raising the topic of palliative care because, at least in the United States, it is not talked about as much. Most people don’t really understand what palliative care is, so they fear it. Most doctors are not initiating discussions at diagnosis, so it is more normalized, it’s understood, it can get integrated into a treatment plan over time.

So I think that, I just wanted to underscore that the quality of life guidelines should also be part, or we should be making guidelines around quality of life issues.

Maria Wetzel, Breast Cancer Research Advocate, National Breast Cancer Coalition:

The word palliative is another one that is a loaded word because it definitely means different things to different people. Because basically most treatment for metastatic disease is palliative, it’s not curative, and there is not a curative intent at this point. Of course, we’d love to see that but it’s probably, it certainly is out of reach at this point.

And the other is, that we do not have a good mechanism for looking at quality of life. And so that is very inconsistent across trials. Sometimes it is not done at all, but even when it is done it is maybe sporadic, it’s not spelled out, it’s not done often enough. And as you and I both know, I’m sure, it can change not every 3 months, it can change on a daily basis or wherever you are in treatment.

Shirley Mertz, Board Member, Metastatic Breast Cancer Network:

As I sat at the Lisbon conference in which they were seeking to establish guidelines, my thought, as the patient, was that if we had guidelines for the treatment of metastatic disease, not only would, I think and as they stated, our outcomes would improve for patients, but also I think it would be an excellent tool for a patient to have.

As I said earlier, knowledge is power, but I think a patient could sit down and read the guidelines and not necessarily expect that, you know, a), b) should be followed, but get an overview of what the treatment protocol should be so that they can ask themselves, “am I in the setting that the guidelines are being followed? What questions could I be asking my doctor about my own situation that maybe were brought about by reading the guidelines?” So I am really hopeful that these guidelines, which are expected to come out early in 2012, will be published. And I know many of the advocacy organizations that try to help metastatic patients will put those ups so that people could read them.

Maria Wetzel, Breast Cancer Research Advocate, National Breast Cancer Coalition:

We need a better way of figuring out quality of life that is standardized.

Shirley Mertz, Board Member, Metastatic Breast Cancer Network:

And for the early stage breast cancer people, they should also demand that any treatment that is being developed have a definition or some explanation of toxicity so that people can make decisions about what treatments to take.

END OF VIDEO