Can Guidelines Spur Awareness, Political Action in Metastatic Breast Cancer?

Kathy D. Miller, MD; Fatima Cardoso, MD


June 17, 2016

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Kathy D. Miller, MD: Hi. I'm Dr Kathy Miller, professor of medicine at the Indiana University School of Medicine in Indianapolis. Welcome to Medscape Oncology Insights. We are in Chicago, reporting from the floor of the 2016 Annual Meeting of the American Society of Clinical Oncology (ASCO). I'm joined today by Dr Fatima Cardoso, director of the Breast Cancer Unit at Champalimaud Cancer Centre in Lisbon, Portugal, and the lead author of a global report[1] and lead proponent of a global initiative in metastatic breast cancer. Welcome, Fatima.

Fatima Cardoso, MD: Hi, Kathy.

A Voice for Metastatic Breast Cancer Patients

Dr Miller: I want to take you back a couple of years to the first Advanced Breast Cancer (ABC) Symposium. You brought together colleagues from around the globe to focus on advanced or metastatic breast cancer. That has been an area that hasn't gotten enough attention. Can you tell us how the ABC group got together and what the group hopes to accomplish?

This group of patients felt totally abandoned by both the scientific community and the advocacy community.

Dr Cardoso: It started back in 2006. Around that time, two very interesting surveys were published. One was called the Bridge Survey[2] and the other one was called Silent Voices,[3] and they both showed that this group of patients felt totally abandoned by both the scientific community and the advocacy community. People would just focus on the pink message and forget that for one third of patients, despite everything being done properly, they will relapse and die of the disease. Those two surveys really touched me, and I thought we had to do something to change this.

I got the idea of building a consensus conference around advanced breast cancer management, but nobody was interested. I approached several of the big societies and big conferences of breast cancer that already existed, but nobody wanted to focus on or be linked to metastatic disease. So, I spoke with the European School of Oncology and explained that this is a question of education; there is a lot of knowledge already for the treatment and management of this disease, but many practicing oncologists are not fully aware of that knowledge. If they were aware and if they would implement the guidelines, I am a strong believer that we would reduce mortality by about one third worldwide.

The quality of oncology care in a comprehensive cancer center or an academic hospital is not the same as that of the individual oncology clinics around the world. Together with the school, we started with a task force. Immediately, we wanted [to recruit] people from all over the world, because the two surveys showed that it doesn't matter if the person is living in the United States, Mexico, Australia, or one of the European countries; the problems and feelings were the same. That's how it started—with a task force and a discussion about general guidelines on how to manage the disease.[4]

And then it grew. The first time we had a session was [at the 7th European Breast Cancer Conference, in 2010] in Barcelona,[5] on a Saturday morning, the last session of the conference. Everybody thought, "Well, that's what they gave us. It's not going to be very full." But it was full. The sun was shining outside, yet the room had more than 1000 people, which, for European standards, was a very large group.

We moved from the task force to create the ABC conference in 2011.[6] It is a very special conference because patients are our partners. At some conferences, we say that patients are our partners, but they have a separate program; they are not really involved. Here, we wanted them to really be our partners, to be involved and to speak at the same sessions, not parallel sessions. In the end, what we developed were international guidelines for the management of the disease[7]—not discussing whether this drug is better than that drug, but how to manage the disease overall and what you can do if you are in the United States, Mexico, or Africa.

Guidelines Applied as Political Pressure

Dr Miller: I want to talk to you a little bit about those global guidelines, because there are very different healthcare systems, very different economic pressures, and different drug approvals. Can you give us an idea of what some of the global guidelines or global standards are that the group really thought everyone ought to meet when it comes to managing metastatic disease?

In certain areas of India, a palliative care physician cannot enter a home with morphine in his bag, because he will go to jail.

Dr Cardoso: Access to pain medication is something that I don't think anyone is against. It has to be in the frontline of our fight for treating advanced cancer. And yet, in many places around the world, you do not have access to morphine. Morphine is not expensive, but there are taboos. For example, in certain areas of India, a palliative care physician cannot enter a home with morphine in his bag, because he will go to jail. It's considered an [illegal] drug.

In other parts of the world, they simply don't have access even to very simple pain medications. I help some of our colleagues in an African country, and just the other day they were telling me that they ran out of morphine. Those are situations where we also need to use the guidelines as a measure of political pressure so that everyone has access to that type of treatment.

We also started to fight to ensure that these patients are treated in a multidisciplinary way. You remember that many years ago, when we started discussing multidisciplinary treatment for early breast cancer, our surgical colleagues said, "There is no way I'm going to spend time sitting on a chair listening to you discussing cases. I want to be in the OR." The same thing happened with other specialties. And then everybody understood that it improved survival if you discuss patients in a multidisciplinary way before you make decisions. Very few people were doing that for metastatic patients.

I still go around the world presenting the guidelines, and one of the first questions I ask is, "Do you discuss the metastatic patients?" You would be surprised that in many big centers in the United States, in Germany, and in France, they don't. They discuss early but not metastatic cases. So that's another thing that you can fight for regardless of where you are.

From there, we focused on information, on being honest with the patient and telling the patient that the goal is very rarely for a cure. Many patients seeking second opinions are already on the seventh or eighth line of treatment and still believe that they are going to be cured. If they have to do the last steps in a very short period of time, after they are already in palliative care, it is much more difficult than if they deal with it slowly and have time to adapt, and the family also has time to adapt.

These are the general recommendations. There are more than 100 recommendations. After we got more comfortable and we dealt with the basic guidelines, then we started to discuss how to manage individual breast cancer subtypes and [the use of] available drugs.

Continued Need to Improve Care and Survival

Dr Miller: I want to ask you about how we're doing. This is an area that you've spent a lot of time looking at. You've just put together what I think is the first global status report for how we are doing in the management of patients with metastatic disease, looking over a 10-year period to see whether we've made progress.[1] I looked at the report when it first came out, and it moved me to tears. It was a very sobering report. I took away that we're not doing very well. Can you tell us more about that global status report?

Dr Cardoso: It was a collaboration between the European School of Oncology, the ABC community, and Pfizer Oncology.[1] Also, the Metastatic Breast Cancer Alliance in the United States did a report on the status of advanced breast cancer in the United States.[8]

We moved on to trying to have a global view of what is happening around the world. From the first surveys in the early 2000s, the way that we see things are not that different between the United States and the rest of the world. Of course, more people in the United States have access to treatment than in some other countries. Nevertheless, some issues are very common no matter where you live.

Not only do people not know the difference between metastatic and early breast cancer, they don't know that you can die from breast cancer.

Two findings in this report were most striking to me and painful to see. In 10 years' time, the median survival or the percentage of patients who live 5 years had almost no change—maybe 2 or 3 more months in terms of overall survival and 22%-25% in terms of those who are alive at 5 years.[1]

Another thing that really touched me was a survey on the knowledge of the general population about metastatic disease.[9] Not only do people not know the difference between metastatic and early breast cancer, they don't know that you can die from breast cancer. They really believe that if they exercise, eat well, and do the screening, they will never die of breast cancer. In the United States, France, Germany, and eastern countries, 1 out of 4 or 1 out of 5 people said that metastatic patients should not discuss their disease with anybody else except their physician. This taboo around death and the fact that cancer can lead to death is still there, so we clearly did not pass on the message of the support that these patients need.

Dr Miller: I know that the next ABC conference is coming up next year, and there is a slow increase in the study of metastatic patients and of metastatic disease. Is there anything you've seen at this meeting that you think might help move us along those steps?

Dr Cardoso: I think there are two big areas where we can make a difference. Clearly, in the HER2-positive subgroup we changed the natural history. I think that we may be on the verge of being in the same situation with the luminal types and for the ER-positive subtype. I do feel that with the new drugs coming into that arena, we will be able to go one step further in terms of substantially increasing the survival of those patients.

I have not yet seen anything this year that would make that change for the triple negatives. We have to keep working for that. Another surprising finding of this report is that we need better tools to improve the quality of life. In the report, the quality of life in the past 10 years did not change much, but I think we now have a lot of supportive care, medication, palliative care medication, and better tools to measure the quality of life. Perhaps we can also make a big advance in that area.

Dr Miller: Fatima, thank you so much for coming in and thank you for tackling this problem that affects all of us and our patients across the globe.

Dr Cardoso: Thank you.

Dr Miller: And to you, our listeners, thank you for joining us for this edition of Medscape Oncology Insights. This is Kathy Miller, reporting from ASCO 2016.


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