What's not being told about brain cancer: "There has been little development in its treatment in the last 20 years."

The last three decades have been pivotal in the advancement of cancer treatments . We have seen this especially in breast, hematologic, and lung cancer, with new therapies that have significantly improved survival rates . However, this progress has not been the same for all cancers; some have lagged far behind.

This is the case with brain tumors : while overall survival from cancer has improved by 20% in 30 years, it has only improved by 1% in brain cancer. What accounts for this overwhelming difference? The easy answer is their low prevalence compared to other tumors (estimated to account for only 2% of all cancers diagnosed in Spain in adults). The difficult answer hides many other nuances, such as the lack of investment, the heterogeneity of the disease—there are more than 350 different types—or the complexity of its management.

That's the reality Manuel Meléndez encountered when his wife, Rocío, was diagnosed with oligodendroglioma in 2020. A rare tumor for which there was barely any information and no clinical trials. A tumor that led him to create Oligo Spain in Córdoba and that would be the origin of the Association of Patients with Brain and Central Nervous System Tumors ( ASTUCE Spain ), of which he is a co-founder. "We shouldn't make comparisons, but there has been progress in other types of cancer, but unfortunately, we don't have any in brain tumors. This is what worries us, and as an association, it made us consider turning it around and changing it," Meléndez said. To this end, they organized the conference Beyond the diagnosis: what we don't know (or talk about) about brain cancer , in which various specialists working in hospitals and public and private entities across Spain, as well as patient families, participated.

"The only significant development in recent years has been TTFields, which have been shown to increase survival."

During the meeting, Dr. Juan Manuel Sepúlveda , a specialist in Medical Oncology and Neurology at HM Sanchinarro Hospital, part of the 12 de Octubre University Hospital and a member of the ASTUCE Spain Scientific Committee, explained the current reality of brain tumors, the different grades available, and the current treatment options in Spain . Among these, the most common are glioblastomas , which are also the most aggressive, but there are other lesser-known types such as astrocytomas and oligodendrogliomas, which, although they have a longer life expectancy, are also malignant. The main treatment is surgery, but in many cases, it is necessary to complement it with subsequent therapies. "From grade 2 onwards, patients are not cured with surgery alone and almost always require subsequent treatment with radiotherapy and chemotherapy . Since 2005, there have been very few advances in treatment," the specialist indicated.

The only significant innovation has been TTFields , which, as the doctor explains, "is a device that works by using electric fields that change the polarity of tumor cells to prevent them from multiplying. This technology, which is continuously applied to the hairless scalp, has been shown to increase overall survival ." The problem is that, for now, only a few hospitals in certain autonomous communities , such as Catalonia, Madrid, Galicia, Aragon, Murcia, and Castilla-La Mancha, have this technology, so some patients still do not have access.

"The hope lies in CAR-T therapies, but their development in solid tumors is complex."

On the other hand, molecular target therapy is also being applied, but only in 5% of glioblastomas: NTRK, BRAF, FGFR, and MET, for which drugs are available that control the disease for a time. Hope, however, lies in CAR-T treatments . "This involves changing the programming of cells that, under normal conditions, would kill viruses or bacteria, so that they attack tumor cells. Although they are working very well in hematological cancers, their development in solid tumors is more complex, and there are still years ahead," Sepúlveda indicated.

Advancing research, an urgent need

If there was one thing the various specialists emphasized throughout the day, it was the need to promote research . "We are dealing with tumors that need to be researched because they have a significant impact on quality of life and survival. There are tumors for which new developments, such as immunotherapy, have completely changed the prognosis, and only research can lead us to that goal in brain cancer as well," said Dr. María Ángeles Vaz , a medical oncology specialist at Ramón y Cajal Hospital.

“Low investment in research is the reason for the lack of progress”

This is the case of breast cancer , which, as IMIBIC researcher Raúl Luque explains, "20 or 30 years ago was a disease like this, from which most patients died, and now mortality has decreased significantly. Very little is known about brain tumors , and the lack of investment in research is the reason why there has been no progress."

According to official figures, since 2018 the Government has allocated €993.4 million to cancer research projects, the highest amount in history, but ASTUCE denounces that in the case of brain tumors, resources are lacking. In fact, on June 3, they appeared before the Congress of Deputies to present a consensus document proposing new ways to improve care for patients with this disease. Luque adds emphatically that " the system has forgotten these patients. We researchers have the knowledge and techniques, but we need investment and equity. Many things can be achieved with financial investment in a short period of time."

Another topic addressed by professionals was the need for referral centers , which currently do not exist and complicate disease management because of the wide variability from one center to another. "It's important to define common pathways so we know what needs to be done, so that patients receive the same treatment at one center or another. If their center isn't prepared, they can be referred to another that is. Networking allows us to offer treatments that were previously unknown," said Dr. Juan Solivera Vela , head of the Neurosurgery Service at Reina Sofía Hospital in Córdoba. In this regard, Dr. Vaz added that "we must work to ensure that all patients have access to resources nationwide, regardless of their location. We must always minimize travel, but ensure awareness and accessibility ."

Brain cancer is a disease that causes physical, cognitive, psychological, and social difficulties that inevitably have a significant impact on the patient's quality of life at all levels. This also affects the quality of life of their families, who, upon diagnosis, need support from professionals to cope as best as possible with the situation. However, they do not always receive it. During the event, there was a space dedicated to the experiences of families and patients , and many of them agreed that they had not received the best care.

"They told us the tumor was inoperable, but it was. It leaves you with a very bitter feeling."

“At the first hospital, they told us the tumor was inoperable and we had to request a transfer. They operated on him there, but it was possible, and that leaves you with a very bitter feeling,” Pilar Hermosilla recounts about her husband's case, a glioblastoma patient. Fabiola del Castillo , for her part, says that her husband was given his astrocytoma diagnosis in an envelope, without prior explanation. “He was alone, called me, and told me what it said. We had to look for him ourselves. When there's no coordination , things like this happen.” Regarding this, Hermosilla reflects that “ communication and coordination are aspects that can be improved now; it doesn't cost money, and it greatly improves the quality of life of patients.”

“You feel a huge void when you ask your oncologist about a clinical trial and he or she doesn't even know it exists.”

Within this lack of coordination, patients report having sometimes felt that specialists are not informed about the latest advances or clinical trials. Visitación Ortega , ASTUCE spokesperson and relative of a patient with oligodendroglioma, comments that “you trust that you're in the best hands, but sometimes you ask and you feel like you know more than the doctor , and that can't happen.” Meléndez corroborates this: “You feel sadness and a huge emptiness when you ask your oncologist about a clinical trial that's being conducted and they don't even know it exists. Or when they tell you it's not in the protocol, and we learn from other patients in the association that it's being conducted in other hospitals. It's very upsetting .”