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.

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

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