Fatima Cardoso, MD | President, Advanced Breast Cancer (ABC) Global Alliance
Metastatic breast cancer is not simply a later stage of breast cancer. It is a different disease altogether, requiring a profoundly different approach. Treating the two as one disease has been the mistake of almost every health system in Europe.
A person with metastatic disease needs treatment for the rest of her/his life, and it follows an unrelenting pattern: a therapy works, but the tumour adapts and regrows. Then we move to the next, and the next, and the next.
That is why these patients have more in common with metastatic lung cancer patients than with patients whose breast cancer was caught early. Their needs are different too – and typically ignored.
Patient surveys in 2010 and 2013 found that women with metastatic disease felt abandoned – by the health system, by the media, and by the patient movement itself. It was rarely said aloud, but they often felt written off, treated as a lost cause.
Everyone has been focused on the pink message: screening, early detection, everything will be fine. So women with advanced breast cancer usually felt it was their own fault, that they had failed to do what was needed.
So what can we do to help?
These patients need proper supportive care, the treatment of symptoms and side effects, without which no one tolerates years of therapy after therapy.
They need palliative care understood correctly: not as end-of-life care, but as something that belongs almost from the start of metastatic disease, controlling symptoms and treating the whole person, not just the tumour.
They need multidisciplinary care. We build it into the pathway for early cancer yet drop it at the metastatic stage.
They need their legal rights addressed – the right to work with flexibility, because work is a major part of who we are, and the right to social and financial support. Together with the European Cancer Organisation, we are fighting to have advanced cancer recognised as equivalent to a disability or chronic condition, so that patients qualify for real protection.
And they need us to confront the stigma that still surrounds this disease – not only in society, but within medicine itself. During the COVID pandemic, patients with advanced cancer were in some places denied priority for ventilators, refused life-saving care because of the diagnosis they carried. That is the starkest expression of a bias that runs through the whole system.
Beneath it all sits a basic failure: ask me how many people are living with metastatic disease in my country or yours, and I cannot tell you. Nobody can.
Cancer registries record diagnosis and death, not relapse. And often not even disease stage at diagnosis. These patients do not exist in the data. And what you do not count, you cannot improve.
I am not only talking about providing the appropriate diagnostics and treatments. I mean delivering the long-term support these patients need: specialist nurses, psychologists, dedicated oncologists, multidisciplinary meetings. In many countries, they do not exist in sufficient numbers.
Policy repeats the silence. Most national cancer plans don’t cover metastatic disease or mention it only briefly. Europe's Beating Cancer Plan, at first, said nothing at all – until a group of us intervened. Then there was something. Not much, but something.
“What you do not count, you cannot improve.”
Encouragingly, we are starting to see glimmers of progress. Several countries – France, Germany, the UK, the Netherlands – have created separate registries and audits dedicated to metastatic breast cancer. These are giving us a truer count of who is affected and showing how treatments perform across a much larger population than any clinical trial. That real-world picture is already exposing a hard truth: too many patients are not receiving the treatment the guidelines recommend – a gap between best practice and what patients actually get – even in high-income countries and even in countries with a national health system.
Some countries are also changing their labour laws so that patients can keep working while undergoing never-ending treatment. (Almost all of this has been led by patient organisations.) In the vast majority of countries, however, the law still leaves work flexibility to the employer and offers the employer little support, which means the law is not applied in real life.
Finally, longer survival has brought something we never used to discuss in advanced cancer: survivorship. Patients now live many years on continuous treatment. That requires sustained psychological and social support, and a real, personal balance between quality and quantity of life. It also requires access to several types of treatment, a fact often not understood by decision-makers and payers.
The next step is to make the commitment collective and countable. Because the needs cut across every tumour type, we have asked the European Cancer Organisation to create a work stream bringing all metastatic cancers together behind one charter, building on the work of the ABC Global Alliance: ten actions, ten objectives, built to be measurable.
For the first time, I am optimistic. The mentality is slowly changing. We are moving from 'who cares, they’ll die anyway' to 'you can live a long time with metastatic breast cancer. Let’s make it a good life'.
That shift is where it begins. Everything else – the policies, the systems, the care itself – must follow.
