«The word metastasis continues to be quite scary for society. Saying I have breast cancer is not the same as saying I have metastasis. Neither socially nor professionally. When you have breast cancer you are away for a few years, but then you return to your … normal life. In our case this is not possible, there is no going back, hopefully we will be oncology patients all our lives. Pilar Fernández, from Asturias with three breast tumors behind her, president of the Spanish Association of Metastatic Breast Cancer (Aecmm), and the only survivor of the five founders of the association in 2018, a thermometer of the severity of this pathology. Every year more than 35,000 cases of breast cancer are diagnosed and 30% will end up developing metastases, spreading their tumor cells to other organs of the body. And many affected are too young.
Pilar says she feels lucky (“I have my pain and my body and paint but I identify with a phrase my grandmother said: ‘I suffered a lot because I didn’t have shoes until I saw a child who had no feet'”), but today Today she only laments the stigma (physical, psychological, work, family, even in relationships) that still weighs on incurable patients like her, compared to the “curable” ones, those diagnosed in time and with a good prognosis.
100
Breast cancer cases every day
Throughout 2024, 36,000 new cases of breast cancer will be diagnosed, an average of a hundred a day, according to the Spanish Society of Medical Oncology (SEOM). It is the most common type of tumor among women, ahead of colorectal, lung, uterine body, thyroid and pancreatic cancer. One in three cases will end up developing metastasis, what is called metastatic breast cancer, for which there is currently no cure, which “absolutely” means that it is terminal.
The Lancet, considered the bible of doctors, recently published that stigma causes metastatic patients to “not seek the necessary help, become socially isolated, and not receive adequate medical care.” This stigma derived from the false belief that metastatic breast cancer is a terminal disease was debated in ‘The Conversation’, a meeting organized by Colpisa with the collaboration of the pharmaceutical company Gilead, and in which the president of the Aecmm participated. and the oncologist Javier Cortés, director of the International Breast Cancer Center (IBCC), a center in Barcelona specialized in breast cancer.
«This cancer is spoken of as a terminal cancer in which little can be done. And it is not like that. It is true that today it is a disease that is not yet curable, but there is tremendous room for hope. In cases like Pilar’s we have been able to make it chronic,” explains Cortés, who is seeking funding for an ambitious global study – the first of metastatic cancer – that seeks to prolong the current survival of this pathology (between four and five years).
Pilar Fernández, president of Aecmm, and oncologist Javier Cortés, during the talk on metastatic breast cancer.
Oscar Chamorro
To banish this social stigma, Pilar proposes a more informed citizenry about this cancer, which is still very unknown. «The misinformation is tremendous. Awareness campaigns must be carried out so that people know this reality and do not shun you for having metastases. It’s not that you reject them, but they don’t know what to say to the sick. I tell them, ‘call her, go to the movies, do what you would do with anyone else.’ And above all, we must be clear that metastasis is no longer synonymous with death, or at least not with immediate death. Now you call them metastasis and they already see you as dead and that leads us to a social isolation that we did not seek.
More money for research
And if information is the tool to overcome social stigma, the medical challenge is “more and more” research. “And to do research you need money,” recalls the director of the IBCC, who believes that a good patronage law or a specific box in the tax return with its own X for Research could stimulate it.
On the other hand, Pilar, as a patient, and Cortés, as a doctor, observe with concern and anger how many treatments that are developed thanks to clinical trials carried out in our country do not reach Spanish patients, but do reach patients in Italy or Germany. “It is shameful that we have drugs available and they do not reach the metastatic patient the next day,” says the oncologist. And Pilar regrets that the drugs approved by the European Medicines Agency (EMA) are delayed because, first the autonomous communities and then the hospitals, re-evaluate them, “when what it is about is streamlining these procedures by avoiding repetitive evaluations that They are a waste of time”.
Cortés sees it as “dramatic” that the EMA has given the green light to drugs capable of prolonging survival in metastatic cancer patients “and even improving quality of life”, and “we are still unable to administer them in Spain. And even more dramatic,” he points out, “is that there are hospitals where a patient requests a treatment that has been applied for years and is denied because they tell him that it is still in the research phase,” or due to “cost-effectiveness” criteria,” he adds. Pillar.
Hence, both criticize “the inequity” in access to the most advanced therapies, such as immunotherapy, and encourage patients to exercise their right to request a second opinion. “A patient can go from being cured to not being cured due to the wrong treatment,” warns Cortés.
