LIVING WITH A BRAIN TUMOR DIAGNOSIS: WHY SURVIVORSHIP MUST BECOME PART OF CARE
I just read Dr. Enrico Franceschi‘s article, published on Cancerworld, and I found it truly interesting. Dr. Franceschi, who is also a member of the Scientific Committee of Glioblastoma.IT ODV, lucidly addresses a fundamental and too-often ignored topic: what it means to live after a brain tumor diagnosis, or to live with its consequences for months, years, or a lifetime.
A sentence in the article is deeply affecting: “When this tumor entered our lives, nothing seemed stable. We had to rebuild our days piece by piece.” This testimony resonates with the experiences of many patients and caregivers we meet every day. The central message of the article is clear: “survivorship”—life with and after cancer—is not a phase that begins after treatment. It begins at the moment of diagnosis.
The combined effects of surgery, radiation therapy, chemotherapy, antiepileptic drugs, cognitive impairment, and chronic fatigue do not follow a linear path. They overlap, change over time, and impact memory, attention, and the ability to work and relate to others. Many patients describe days of great clarity alternating with “foggy” days that are difficult to predict and manage. It’s a condition that requires listening, support, and appropriate tools. As Dr. Franceschi points out, living after a brain tumor means dealing with:
- cognitive and neurological changes
- epileptic seizures and medication management
- chronic fatigue and endocrine disorders
- psychological and emotional effects
- personal identity, work role, and social relationships
- care burden on family members
These aspects define the quality of daily life and should be considered an integral part of the treatment process. Despite growing awareness, support options remain extremely variable across the country.
Neuropsychology is not accessible everywhere; rehabilitation is often fragmented; many families find themselves alone in managing complex difficulties. Three fundamental gaps persist: systematic cognitive follow-ups are lacking, rehabilitation programs are uncoordinated, and significant geographic and socioeconomic inequalities persist.
Thus, patients with similar needs receive very different support depending on the region they live in. Meanwhile, innovation is accelerating: targeted therapies, new molecules for IDH-mutated patients, experimental immunotherapies, CAR-T, radiogenomics, and artificial intelligence applied to MRI. These advances offer real hope, but they risk amplifying the disparities between those with access to advanced centers and those without. If survival increases without simultaneously improving quality of life, the burden falls on families. As Dr. Franceschi concludes, the question is not just “how long do we live?”, but “how do we live?” To truly improve survival, we need to: integrate cognitive assessments and rehabilitation into the standard care pathway, ensure equitable access to molecular testing and new treatments, support caregivers and social reintegration, and implement specialized psychological support programs.
To fill part of this gap, as you know, Glioblastoma.IT ODV, with the support of the Friuli Venezia Giulia Region, has created the Speranza e Coraggio project, which offers specialized psychological support for patients, caregivers, and family members. This service is free, accessible online throughout Italy, and provided by psycho-oncologists and neuropsychologists specializing in brain tumors. To access it, simply visit https://navigator.glioblastomamultiforme.it and, after registering, schedule an appointment by selecting the Psycho-oncology/Neuropsychology specialization. This is a concrete example of what it means to put survivorship at the center today.
