Front Row Seat: Dr. Fatima Cardoso on Aiming Higher - Hope and the Road to a Cure

In this episode of Life from Stage IV, host Victoria Goldberg sits down with Dr. Fátima Cardoso, Breast oncologist and president of the ABC Global Alliance, to unpack a landmark decade of progress — and confront what still needs to change.

The ABC Global Alliance's 10-year global report is out, and the findings are both encouraging and sobering. Survival rates have improved. Patient advocacy has grown stronger. Quality-of-life research is finally catching up. But healthcare inequalities have actually worsened,vnot just between countries, but within them, and only 10% of cancer patients worldwide are enrolled in clinical trials.

Dr. Cardoso and Victoria discuss:

• Why HER2-positive patients are living 10–15+ years with metastatic disease, and what that means for the possibility of a cure
• The growing divide between what's available in wealthy countries versus everywhere else
• The fight to move clinical trials beyond progression-free survival toward overall survival
• Why we still don't know how many people are living with metastatic breast cancer — and what Australia's groundbreaking count revealed
• The new quality-of-life tool being developed specifically for metastatic patients
• The charter for the next decade: what the global community is committing to from 2025–2035

This is a conversation about hard truths, hard-won victories, and a movement that refuses to settle for less.

Thanks for listening. If you enjoyed the episode, subscribe and leave a review — it really helps. Follow us on social media @livefromstage4 and visit our website at www.livefromstage4.org for show notes and links.

 Your support helps us continue to share important stories and advocate for those living with metastatic breast cancer.

Until next time, take care and keep pushing for progress.

Transcript

SPEAKER_01 0:10

Could if you are foot answers be closer than you think. Welcome to Life from Stage 4, where MBC takes center stage as we talk to experts to share inspiring stories, break down science, and find the spotlight on what matters most. Because when it comes down to it, the spot, for us and by us, is all about us. For decades, metastatic breast cancer meant one thing managing the disease. But what if we aimed higher? Welcome to Life From Stage 4. I'm your host, Victoria Goldberg, and today I'm sitting down with one of the most influential voices in metastatic breast cancer, Dr. Fatima Cardozo, oncologist, advocate, and the driving force behind the ABC Global Alliance, the worldwide movement, uniting patients, physicians, and policymakers in the fight for better care. Today we're examining a decade of hard-won progress, the 10-year global report that shows where we've moved the needle and where we haven't. We're talking survival rates, quality of life, and the fight against staggering inequalities. And then the charter, an ambitious roadmap for the next 10 years. But here's what you really need to hear. Dr. Cardoso believes we're at a crossroads where for the first time we're aiming higher and talking about the possibility of a cure. Let's get into it. But even though she doesn't require any introductions, there have been some changes in her life recently, so I would like her to talk about them. Thank you very much, Victoria, for this kind invitation. Yes, indeed, I had some changes in my life. I moved from Portugal to France, to Nice in the south of France. I work in a center called Antoine Lacassagne, where I'm responsible for the clinical trials, but also international engagement. And I continue to be very dedicated to the work of the ABC Global Alliance. I'm still the president and continue to work as much as I can for the rights and the improvement of lives of patients living with advanced breast cancer all over the world. Thank you so much, and you're doing so much for us. Before we talk about the ABC Global Alliance report for the last 10 years and the charter for the next 10 years, let's talk a little bit about the Alliance itself. What is it, when it was founded, why it was founded, so that people have a better understanding what we're talking about here. Absolutely. It all started quite a long time ago in the early 2000s. And at that time, there were two surveys done. In that case, were only women living with metastatic breast cancer. And those surveys showed that these women felt totally abandoned. Abandoned by everyone, including researchers, physicians, policymakers, decision makers, but also even the patient groups, because everybody was so focused on screening and early detection. And these patients felt totally abandoned. And so we wanted to do something to change that. And when we look at the outcomes, the evolution of metastatic breast cancer, we saw that the progress was so painfully slow. For example, compared with early breast cancer, where we see progress since the 90s with an exceptional decrease in mortality. So we look at early breast cancer and said, okay, what has changed? And of course, there's a lot of things that have changed, but there were two things that were fundamental: the multidisciplinary care and the evidence-based care. So care according to the guidelines that are based in evidence. But in the metastatic setting, that was not the case. So we started by creating guidelines and looking into all the evidence, and based on that evidence, issue guidelines on how to treat the disease and also identify the spots where you needed to have research done. So this was our work in the beginning of the 2000s. And then the work was clearly of importance to a lot of people. They received it very well, they wanted to be involved, but it was taking too long. So in 2011, we created the first dedicated conference to metastatic or advanced breast cancer. And we started then to work more intensively in the guidelines. And also around the conference, there was this movement of advocacy and of lobbying, and all of us getting together, patients, physicians, nurses, everyone that had an interest in advanced breast cancer. And so that's how, from the conference, the alliance was built. And it came to life in 2016. And at first we were a project of the European School of Oncology because it was the only organization that wanted to help us at that time. And then we continued to grow, and in 2019, we became an independent, nonprofit organization. And in fact, we are like a federation. So our members are organizations, not individuals, but organizations that have an interest and that do something dedicated to metastatic breast cancer. And the goal was to bring all stakeholders around the same table. So we have members that are patient groups, we have members that are hospitals, cancer centers, health professional societies, we have pharma and diagnostics, and we want to have even more the policymakers and the decision makers. They are a bit more difficult to engage, but we continue to fight for that. And so now we are more than 300 members in more than 120 countries around the world, and we collaborate very, very closely with the US, the MBC Alliance, so that we are aligned in our requests and in our fight for the rights of these patients. And we do many different types of projects. They go from direct help in the different countries to work at the level of the European Commission, the European Parliament, WHO, United Nations, where we can make the voices of these patients heard. When we created the Alliance in 2016, we looked at the previous decade, so 2005 to 2015, what had happened in the field of metastatic breast cancer. And when we looked there, we identified the gaps. And the gaps were identified together with the patients. And based on that, we established 10 goals, 10 goals that we wanted to fight for in this next decade. And to give some examples, these goals cover from improving survival, which is goal number one, to improving quality of life, but also improving accessibility to care, access to multidisciplinary and guideline-based care, but also fighting stigma, fighting for the working rights of patients who live with metastatic disease. So there is a whole broad of goals that cover the entire life of a person who lives with this disease. And the whole community got together to fight for these goals between 2015 and 2025. Yeah. There was a conference in the late fall of last year in Lisbon, the Global Alliance A conference. And this was my first conference to attend in Lisbon. And I'm so sorry I hadn't attended the previous ones, because it was probably the high point for me last year. It was such a wonderful, wonderful conference. And I've learned so much. And that's where I first heard about the 10-year report that you had published right at that time and the charter for the next 10 years. So why don't we switch to that and let's talk about the report. So what changes have been made in the last 10 years? So at the closure of the decade, we wanted to look to each of the goals if we had moved forward or not. So what we did in the second report was okay, let's look at what has been achieved in these last 10 years. And if I summarize the report in just a sentence, I can do two sentences. We have seen improvements, but we also have detected a lot of challenges that still remain and that need to be addressed. But there is unfortunately one exception. So goal number nine is goal that relates to accessibility and is connected to decrease the inequalities that exist. And unfortunately, what we see in the report is that these inequalities have increased. Not only have they not decreased, but they are worse now than they were 10 years ago. And these inequities have become worse, not just between countries, between high-income and low-income countries. No, they have become worse also inside each country. So now it is very frequent that two people have the same disease, they live in the same country, sometimes the same city, and they have different treatments because of what they can or cannot afford. And although this was happening already, for example, in the US, based on the way that the health system is organized, it depends on what the patient can afford in terms of coverage. But in Europe, for example, there are several countries who have a national health system similar to the UK, for example. Portugal has one, and France has one. And in that national health system, in principle, you don't pay anything and you have access to the treatment. But what has happened these 10 years is that the treatments have become so complex and so expensive that the majority of the national health systems cannot afford everything for everybody. And so the quality has decreased in the national health systems. And those patients who can afford an extra coverage, private health coverage, can have better care than those who cannot. So again, inequities within the same country have become worse. And I think it is a sad finding and a very complex one because there are many causes for this to happen, but one that we have to intensify our fight in this next decade, so from 2025 to 35. So it has to become a priority for all of us. We have to find a way that the system is not so unequal and that the advances that we have seen in terms of new treatments, targeted treatments, multidisciplinary care, all of that can reach all patients as well. Yeah, well, you know, I interviewed Leslie Stephen before her very successful summit that just took place. And by the way, she mentioned that you had come to the one before that. But she did say something that was a complete eye-opener to me and probably to every listener in the US. She was explaining how there are four nations in the UK and you can't get the same treatments. So-called uh code lottery, I think she called it, where there are different treatments in different nations within the same country. Yes, and this is the kind of inequity within the same country that I'm trying to explain. It happens more and more in countries that are considered high-income countries. That's right. Well-developed countries. And of course, the ABC Global Alliance does a lot of work in low and middle-income countries. And when you go there and you face the reality, you understand that what we listen in conferences and the biggest advances, I estimate, it's my own estimate, that it's only reaching maybe 10% of patients, that the whole 90% of patients in the world are not having access to the improvements that we are seeing. It's frightening and it's staggering. And I know you must have seen there was the Lancet Oncology report that actually said, I'm just read this, it says that in high-income countries, decades of investment in screening, early detection and treatment drove a nearly 30% decline in breast cancer mortality between 1990 and 2023. But in the world's lowest income countries, the trend is moving in the opposite direction. That's for breast cancer, have nearly doubled over the same period. And the ABC Global Alliance was part of one of the Lancet Commission, the Lancet Commission that was launched in 2024. And we made sure that there was a special section and a big section dedicated to metastatic breast cancer. Because another difference is also that in the US, for example, the majority of breast cancer cases are diagnosed in stage one or two. But if you go to a low or low middle income country, the percentage of patients that are already diagnosed with metastasis goes up to 60 and sometimes 80%. So it is very, very frightening because obviously there are a lot of limitations. But I would like also to mention some of the good things we have seen in the report. Of course. Not to mention just the ones that did not evolve. So starting with survival, what do we have seen so that everybody can compare? From the previous decade, between 2005 and 2015, we had improved the survival. Let's call the percentage of patients who are alive at five years after the diagnosis of metastasis. They went from 23% to 26% in a whole decade. Now in the second decade, we went from 26% to 33%. And we look at this and say, but it's still very little. But still, it was a bigger improvement. And this is all subtypes together. When we start dissecting the HERT2 positive, they now have a survival that goes beyond five years for the majority of patients. And it's not uncommon that someone can live 10, 15 years with metastases. What is pulling the medium down is the triple negative subtype. Where when we look at the evolution in this last decade, we haven't seen much improvement, only two months. So we are still having an average of about 13 months of medium survival. And I want to make a parenthesis because I know that many of those who are listening may have this disease, and I don't want them to be stuck with numbers. When we speak about mediums or average, we are saying that about half of the patients live longer and about half live less. But we are not telling that everybody only lives that number. And it's very individual. And so if you are listening and you have one of these subtypes, please know that I'm not at all saying that everybody has only 13 months. Okay, I'm just saying he average. And saying also that the biggest improvements we have seen was in the HER2 positive. And if we think about it and say, okay, why? Well, because we have developed many targeted agents against this type of breast cancer, and all of them had a positive impact in survival. For the hormonal dependent, we had the CDK46 inhibitors to improve survival. We're still now developing a lot of other new drugs that may impact survival and may have a big impact. But for triple negative, only very recently, in the last years of the decade, we started to have immunotherapy and antibody drug conjugates that have an impact in survival. So I'm very hopeful that in these next decades we will see an improvement in survival for triple negative as well. The fact is, and we've talked about this before, triple negative is not the same disease. It's a basket of subtypes that we don't quite know. And one of the reasons the HERT II treatment is so powerful is because you guys understand the HERT II positive disease and what drives the disease. Yeah. But let me ask you something. It's a little off-topic, but I really want to ask you because it's kind of related to what we're talking about right now. Dr. Eric Weiner at your conference had a session where he said, let's talk about the cure. But I wanted to hear your opinion. Is this the right time to talk about the cure? So we try to be very balanced and realistic, but also I think it is time to be optimistic as well. And there was a change that we called for in the report and also in the Lancet Commission, and that was for a change in mentality. In this sense, we know that in the majority of cases, metastatic breast cancer is incurable. But we are also seeing that for these two subtypes, the HERTO-positive, especially, but also coming around the hormonal dependent, sometimes we are able to control the disease for so many years, sometimes even induce what we call a complete remission, meaning that there are no visible signs of the disease. Because unfortunately, at the moment we are all going to die of something, right? But if we control the disease so that you can live decades, not just years, but decades, with a good quality of life, then I think there is optimism that maybe one day we can start about curing some patients. It is still the exception these days, but we truly believe that we are at the cross road where we can start talking about aiming higher and aiming maybe to cure some patients. That's hopeful, isn't it? It makes a difference. And also speaking about the quality of life, what we see in the evolution of that goal is that we see an improvement overall on the quality of life. And we also see a lot of dedicated research because we didn't used to talk so much about quality of life like we do now. And every clinical trial now is almost mandatory to have quality of life as an outcome that is evaluated. However, we have been measuring quality of life with tools that were developed to early breast cancer, not metastatic breast cancer. And one of the things that is almost done, but not yet, we have been doing for a couple of years now is the development of the first tool that evaluates quality of life in the metastatic setting. We've been talking about the importance of the patient voice, and that brings us to a massive shift happening in how cancer drugs are actually graded. It's a project led by the EORTC. That's a bit of a mouthful, isn't it? It stands for the European Organization for Research and Treatment of Cancer. Think of them as the NASA of cancer clinical trials in Europe. They're the ones who set the global standards for how we measure if a treatment is actually working for the person taking it. The EORCC is a nonprofit that coordinates huge research projects across dozens of countries. The world renowned for creating quality of life questionnaires. If you've ever filled out a survey at your oncologist's office about your symptoms, there's a good chance it was an EORCC form. But for years, the standard breast cancer tool was one size fits all. It used the same questions for someone with a tiny curable tumor as it did for someone living with stage 4 disease. That's why the ABC Global Alliance has stepped into partner with them. Together, they're developing a specialized tool called the EORTC QLQ MBR 44. This isn't just a Mariner update, it's a comprehensive questionnaire designed specifically for the unique physical and emotional experience of metastatic patients. Currently, in its third phase of development, the MBR 44 aims to capture the full spectrum of our lives. This tool asks us about the things that actually keep us up at night, side effects that build up over years, not just weeks. The psychosocial impact, like the uncertainty of the future and the specific care loss issues that come with long-term targeted therapies. Are doctors actually explaining the goals of care clearly? Physical symptoms, specifically focusing on bone pain and fatigue that are common in MBC but might be missed in early stage surveys. Why is this such a breakthrough? When a drug company goes to the FDA for approval, they can now show, in a scientifically validated way, that their drug doesn't just shrink tumors, but actually helps patients feel better or maintain their independence. The challenge is implementation. It's a rigorous, long survey. In a busy clinic, it can be hard to get every patient to fill it out. The researchers are still working on how to translate these quality of life scores into the same kind of pass-fail grades used for survival stats. Let's head back to our conversation. So this is a work done by one of the organizations that has developed most of the quality of life tools, the European Organization for Research and Treatment of Cancer. And we are developing together, the alliance is a partner on that. The tool will in the future be included in trials and then in real life to measure quality of life in the metastatic setting. And hopefully, we'll have better results to understand if a treatment truly impacts the quality of life or not. And as you know, we've been talking a lot about patient-reported outcomes. There is a difference between what the patients report and what nurses report and what physicians report. And that has been a good evolution. On the other side, in the global decade report, we still see that about 80% of patients say that the disease had a negative impact on their psychological and their emotional health. So obviously, it impacts the quality of life. And we also see that although we are using these tools in clinical trial, we're still not using them a lot in clinical practice because it takes time and it has become very difficult to have time for the appointments. Another thing we have been talking more and more, and patients have been talking more and more, is about considering not just severe side effects, but also consider those low grade toxicity, but that persist over time and that impact your overall quality of life. And for example, sometimes people say, oh, diarrhea is just grade one. But if you would understand what it means to have diarrhea grade one or two, it means that you will be very afraid to leave your house because you have to be close to your toilet. And I want to remember here the work of Anne Lausser. And Anne did wonderful work about the patient-centered dosing, because we use two high doses of the treatment, particularly in the metastatic setting. And with high doses come higher toxicity. And this work that is now being done to be able to use lower doses with the same efficacy but less toxicity is really important and is another example of how advocacy can change things around the world. I have to interrupt you for just one second to say that we lost endlogue a couple of years ago, but the project continues. The patient-centered dosing initiative, PCGI, is alive and well, and they're doing a tremendous amount of work, and we're so grateful to them for actually having started this conversation. But do you see that there is a change in the actual design of the trials that takes into account this? So I would like to tell you that yes, but a couple of years ago, maybe three, four years ago, I was more optimistic. I fought a lot for trials in the metastatic setting to aim for improved survival and not just improved what we call progression-free survival. Let me pause for a quick knowledge break. We hear two sets of initials a lot when we talk about new treatments. BFS and OS. They sound like alphabet soup, but they actually represent two very different ways of measuring hope in a clinical trial. Let's break them down. First, there is BFS, a progression free survival. In plain English, this is the stable period. It's the amount of time a patient stays on the treatment where the cancer isn't growing and no new tumors are showing up. For many of us, this is the breathing room. It's the time where we can focus on living, not just being a patient. Then there is OS or overall survival. This is the gold standard. It's a simple direct measure of how much longer a drug helps a person live from the day they start the trial until end of life. Now, here is where it gets a little complicated. There is a big debate in the medical world about which one matters more. On one hand, BFS allows drugs to get approved much faster. If a drug stops the tumor in its tracks, the FDA can see that quickly and get the medicine to us sooner. The downside, a drug can have a great BFS, meaning it causes the cancer, but it might not actually result in a longer life overall. On the other hand, OS is the ultimate proof that a drug is working. It's what we all want: more time. But the catch is that OS data takes years to collect. If we waited for every trial to prove OS, we might be waiting years for drugs that could be helping us right now. So the trade-off is often speed versus certainty. The pro of PFS is faster access to new options and more stable time. The con is that we don't always know the long-term impact. The pro of OS is the peace of mind that a drug truly extends life. The con is the agonizing slow pace of the data. Whether trial is looking at PFS or OS, the goal is always the same: finding more ways to stay here with the people we love. Keep those two terms in mind as we head back into our conversation. Now back to Dr. Cardozo. And I was called a lot of names because I'm so focused on improving survival. Oh, I'm sure. But the reason why I say this is when we look back, and now we have looked back at a decade, the treatments that really change the natural history of the disease were the ones that change survival. And you know, we go back to that change of mentality. If you are content with little, you will never reach higher. And so I think we all need to fight together for treatments that improve survival, not just that improve the control of the disease. Otherwise, we will never reach the cure. And yes, it takes more time and more investment, but let's be honest, with the cost of the medication, they can certainly do the investment to check the impact in survival. And so I will continue to fight, but I see a step back in these last maybe three, four years where trials are going back to progression-free survival and forgetting about overall survival. And I really hope that the regulators and the decision makers can join us and help us on fighting against that. And I'm not saying that progression-free survival is not important. It is to control the disease is important, but it cannot be just the only goal. We have to aim higher. And so that's another thing we have to continue to fight in this next decade. The other thing related to clinical trials is we see that throughout the different countries from the five continents, there are still less than 10% of cancer patients participate in trials. In the US, I believe the numbers are now 7%. So it's a missed opportunity to have access early to new treatments, new options, and to make the science move forward. And also there, we see a lot of ethnic inequalities because most patients that go into trials are white, and the other races have a huge difficulty in getting into trials. So, again, something else that has to remain one of our goals moving forward. To have trials more accessible to people, to bring them to where they live. And also a more heterogeneous group of patients, because if you only test the treatment in the same type of person, you don't know if it's worked the same way in another type of person. On the other hand, there were some advances also in the goal against stigma. Okay? So it's not that it has disappeared, it has not disappeared, unfortunately, but it is becoming better in the sense that there are more forums where you can speak openly about your disease, about having metastatic disease. And what I need to say as well is that this decade, the group that has made the biggest advances were the patient organizations. Because now almost every breast cancer patient organization has resources for metastatic patients. And this was not the case in the beginning. But now there are more resources. In terms of information, there is a lot more information. And the more informed you are, as a patient, you can take a better decision. And if you inform better the rest of the society, you will have less stigma. So we still have to work on that, but there was a good evolution in this last decade, as well as in the communication between patients and healthcare providers. That is not to say that everything is well, I'm afraid not. There are still misconceptions. And one thing we evaluated a lot, and I know that it's a topic in the US, but it's also outside the US, is fake news. So misinformation that is mixed with good information, there is bad information as well. And that leads to a lot of confusion and sometimes can be very dangerous for a patient. And of course, with this very fast way of spreading information that we have now, everybody has to be very careful and attentive and look for a good reliable source of information to make sure they are not mistaken. So one of the things the alliance continues to do is to be a hub where patients and healthcare professionals can go to have reliable information. We have constructed hubs of information for certain topics, for example, brain metastasis, where you have a hub with a lot of information, biomarkers, which everybody speaks now about these biomarkers. So we have a hub dedicated to that. And we will continue to develop these hubs exactly to improve access to the right information. And maybe one of the two last points I wanted to make. So a lot of patients, and particularly if you leave 10, 15, 20 years, you don't want to give up on your career. You want to continue to work. But if you have a disease that requires continuous treatment, you need flexibility at work. You need to be able to go to the hospital, to your appointments, to your treatments, and compensate on other days. But you need this flexibility to be able to continue your career and to be able also financially to continue to have a salary and an income. And in a lot of countries, a salary is linked to your health coverage. So a lot of people need to continue to work. And so this is a long fight that we have all over the world for the work rights of patients living with metastatic breast cancer and, in fact, metastatic cancer, all of them. We have done a mapping of the world where these work rights are protected and where they are not, but also social rights and financial support rights. And moving forward, we are discussing within our community, and it would be good if your listeners will also send us their feedback. Is there is this possibility of considering metastatic breast cancer equal to disability in the sense of getting the same rights? On the other hand, we were thinking if we consider a disability, are we increasing the stigma? There is a pro and a con, so good and bad regarding the equivalence of metastatic breast cancer to disability. So there is a debate in the US about whether metastatic breast cancer should be considered a chronic disease. Is that what you're talking about? Yes. Like a disability is a chronic disease, something that you have to live with and that requires treatment, but you can live for many, many years with that. And in countries where advanced cancer is considered a disability, people have bigger social protection and also bigger financial protection. So there's a debate all over the community if that is a way that we should move forward. And maybe it depends on the country, but it's a good debate to have. Goes into our initial discussion. If we are already discussing it, that maybe it can become a chronic disease. Maybe in the future we can aim for cure, at least for some patients. This is actually a very good point to discuss for a minute. In the US, it's a little different. A chronic disease may be a problem for people going on disability. So right now, people with terminal disease automatically get disability. If it's considered chronic, there may be a question about that. Also, another thing that I wanted to ask you, and that's also an important issue. There are many places in this country where a doctor would say to a newly diagnosed metastatic patient, oh, your disease is chronic. You will live for many years and we'll maintain it. It's like diabetes. But the fact is that it's not exactly true. It's not the same. So how would you handle a newly diagnosed person who comes to you? Would you start with this hopeful, oh, you're chronic, or you'll be more honest? I don't think we can say that in the newly diagnosed. I think the information has to be truthful always. And the first change in the mind of someone, particularly if someone had an early breast cancer before, is the change between curable and incurable. And already that is a major step that someone has to deal with. And so we have to first say, look, we are in a different situation now. Before you had a limited treatment, and then you went to your follow-up phase. Here you're gonna have continuous treatment. And say, we hope that you continue the treatment for many years, but let's see how your tumor responds to the treatment. So I do it in a phased way, if you see what I mean. Yes, I think first, yes. First, I try to pass the message now, there is a need for continuous treatment. And then we will see about the prognosis and the time, because it's very different from case to case. Exactly. And perhaps the last point to mention about the report, because it's still not done in the US, is about counting. The patients that have metastatic all over the world, just to explain to all the listeners, we don't know how many people are living with metastatic breast cancer or with metastatic cancer overall, because the cancer registers register diagnosis and death. They don't register relapse. That's right. And we have worked a lot this last decade to change that. Unfortunately, it's a very complex issue, but at least a lot of people are talking about it. The cancer registers are discussing how they can follow the patient and be able to have that information if a relapse occurs. And last year, our friends in Australia were able to count, not to estimate, but to count. And what they found is that the number of people living with metastatic disease were much, much higher, more than the double higher of what they had estimated. So, what this tells us is that if this is the same all over the world, there are many more patients living with metastatic disease than we ever estimated. And if we don't even know how many, how can we allocate the proper resources? There has to be a continuous lobbying, and we will continue to do so all over the world, and we hope the US will continue to do so as well. That we have to change that, and people must be counted at relapse as well. It's a lot easier in a smaller country, in a more developed country like Australia, but it's a much, much bigger issue in the US and many countries that don't have access to these registries. But it had a huge gap when it came to us. Recent changes are finally fixing that. Here's what's new. Additionally, SEER only tracked the cancer based on our initial diagnosis before the war. We were diagnosed at stage two and later developed metastatic breast cancer. Didn't always classify us as metastatic. This made survival statistics for stage four patients look incomplete because they missed many people who progressed to metastatic after their first diagnosis. But here is the big news from the past few years. They have developed AI-powered tools that scan pathology reports to identify metastatic lesions trained on thousands of real cases. They're also linking claims data like Medicare records to spot chemotherapy treatments and recurrences that registries might miss. And they're building special data sets that combine hospital reports, pathology, and insurance claims to track the full metastatic experience, not just the starting point. These updates mean SEER is finally counting people who transitioned to metastatic disease, making the data much more accurate for our community. What does this mean for us? The pro better, more complete statistics that reflect real-life metastatic experiences. This drives more research funding and shows the true impact of new treatments. The con. The data is still catching up. These changes are recent, mostly 2020s. So full population level stats won't be available for a few more years. All the SEER numbers you see online are still pre-update. SEER is evolving to see the metastatic reality more clearly, which is a win for all of us. But remember, these are population trends, not your personal story. Back to our conversation. Well, I don't think it is. I mean, of course it is complex everywhere, but there is a way to do it. What needs to happen, I think the step now that we need to force is the funding. So the cancer registers, they exist, and there is the SEER database in the US. And the SEER database has been working with us because they want to give this step forward, but they need funding to do so. And the second thing that you need to lobby is that because of these data protection laws, it is sometimes very difficult for the cancer register to have access to other databases. And just take a few seconds to explain. So there are databases that register if you use chemotherapy or if you use a targeted therapy. If the cancer register can have access to those databases and cross-check with your data, if you had breast cancer 10 years ago and now you are using chemotherapy or another targeted agent at this moment, it's a sign to the cancer register that you either had a new cancer or you had a relapse. And they should contact you or your oncologist and find out about that. And in the majority of countries, patients understand that need and they do not oppose for the cancer register with all the security to be able to cross-reference with other databases. But in many countries, they cannot do it because of the data protection. So these are two things we need to fight together: more funds to the cancer registry, and the ability to have what we call waivers on the data protection laws. What is your thinking in this area? How can AI help, or is it helping already? AI can help, but AI can only do what we teach it to do. And so data protection is a limitation to the same. Yes, that's that's completely beyond the AI capability. So if we get the funds and the ability to have this waiver for the cancer registries, I think we can solve the problem very quickly with the tools we already have. That's true. That's true. When Australia published their numbers, can models be built based on that to extrapolate what happens in other places? I don't know if we can extrapolate from one country to the other, because access to treatments and to diagnoses are different from one country to the other. Although we can have an idea, it's complicated and we will probably do a miscalculation as we have been doing so far. I think it was a wake-up call, the study in Australia, because it showed a much, much bigger number than it was previously estimated. And the estimates have been very similar from country to country. And so it means that we are not estimating very well, and we really need to count properly. So you know, in the US they say that 30% of early stage breast cancer will progress to metastatic. Do you think it holds true even now? We have done work with called IARC, which is the central part of all cancer registries. It's the part of WHO that takes care of cancer statistics. And every country sends their data to them. And we have done work with them looking into in the more recent years to see if it's still 30%. And what we see, depending on the country, but in high-income countries like the US, it is now between 20 and 30 percent. So it's still high? It's still high, but improving. So it is now coming down to closer to 25%. And so it means that there is an improvement overall. But like we said in the beginning, it's not an improvement to everybody. And so when you look at the average of the population, I would say that it's now around 25%. So it has come down, but there is still a group of patients that, despite being diagnosed early and receiving the proper treatment, will still have metastatic disease. And that's why we need to continue our fight, not just for research, but also for accessibility to the results of the research and the new treatments. Right. The amount of resources that go to studying metastatic breast cancer is quite low. They used to say 7%, it's probably a little more than that. But when we talk about research, and we say that only 7% goes to metastatic breast cancer, it doesn't mean that the new trials that are coming out there won't be for metastatic patients, the pharma spending a lot more than 7%. But what we are actually talking about is about studying metastasis, the actual reason why people progress. Well, I think again, there has been an improvement in the last decade, and there is more interest to understand why cancer cells, it's called dormancy. They stay asleep for many years and then suddenly they wake up and they give the metastasis. And so there are several groups around the world trying to evaluate that. But you are correct. If we look at all the subjects that are topics of research, there is not enough being done to understand why we have metastases, even if there is the proper diagnosis and appropriate treatment. And a lot more needs to go into that understanding, and that will be fundamental for one day to be curable. We don't have that much time. Would you like to talk a little bit about the charter? Yes. I covered almost all the time. You did, you covered almost everything. And so I just want to say that in terms of moving forward for this next decade, we will keep our 10 goals with some changes in the wording, but we will still focus on improving survival for the reasons we discussed. It is still only 33% at five years. We want to improve much more. We still focus on collecting good quality data and counting the patients living with metastatic breast cancer. We will still focus on quality of life because there's still a lot to achieve. And we'll continue to fight for every single patient to be treated according to the guidelines and in a multidisciplinary team. We'll continue to fight for improved communication and involvement of patients in all the decisions. Continue to fight for better information and against the misconceptions and stigma and isolation. We'll continue to fight, also, we didn't speak a lot, but for access to supportive services that are like psychological care, palliative care in a lot of places. Access to palliative care is very, very low. And also supportive. What does it mean, supportive? Is things that we can give you to help you go through the treatment with less toxicity. So all these services are very important, as well as exercise, nutrition, and all these other services that help you as a person. And we will continue to fight for the social and financial and work rights of everybody. And finally, but probably in the top of the list, we'll continue to fight against inequalities and for a better access from everybody around the world to the advances that we have. So this is our charter, is an ambitious one. But I think we need to be ambitious and to aim higher if we really want to change the lives of these patients. Well, I think this is a great way to end. This is a drop mic moment. Thank you so much for being here. It was wonderful to have you here with us. And good luck with your new job. And I hope you come back and talk to us about the advances in the treatments and the trials. I'll continue the work together with EORTC to develop this tool to measure quality of life. Hopefully, in a couple of months, I can come back and tell you that the work is done. All right. Well, I am holding you to your promise, and I will be calling you in a couple of months. And the next conference will still be in Lisbon. Is it going to move to Nice after that? No, it will still be in Lisbon. It will be 2027. So not this year, next year in November. Looking forward to it. Take care. It was so wonderful to see you. Thank you, Victoria. Bye-bye. A decade of progress, inequalities that have grown, and a community that refuses to stop fighting. The ABC Global Alliance's 10-year report tells an honest story. Survival rates have improved from 26 to 33% at five years, quality of life research has advanced, patient voices are louder than ever, but access to care remains deeply unequal between countries and even within them. The 10 goals that drove the last decade, from improving survival to fighting stigma to securing work and financial rights for patients, have moved the needle, but not far enough. And so the charter for the next 10 years doubles down. Better data, less inequality, multidisciplinary care for every patient, everywhere, and a bold new ambition that for some patients, cure may no longer be out of reach. Hope is not just a feeling anymore, it's a direction. And today that direction is forward. If this conversation moved you, share it with someone who needs to hear it. Subscribe to Live from Stage 4 wherever you get your podcasts and leave us a comment. We read every single one. Your voice matters. Until next time.