My name is Iara Mantiñan Búa and before I had cancer, I was a freelance journalist in conflict zones. Journalism and writing were not just my job, but my way of life. Everything changed when a lump in my right leg led to the diagnosis of extraosseous myxoid chondrosarcoma, an extremely rare cancer with no specific treatment. I was 31 years old. I opted for surgery at the University of Navarra Clinic (CUN), followed by an immunotherapy trial in Seville, combining Nivolumab with Sunitinib. Despite the hope this treatment brought, I faced axonal neuropathy, which led me to leave the trial.
I returned to conventional treatments, trying the antiangiogenic Pazopanib, followed by Alpelisib, an inhibitor of my PI3K mutation, which unfortunately resulted in an allergic reaction. Finally, the doctor suggested trying Everolimus, an mTor inhibitor, which has kept multiple metastases under control for two years, although some have shown growth, requiring periodic radiotherapy.
Throughout this journey, I faced financial challenges and job loss, but I also discovered the importance of patient advocacy. In addition to my personal experience, I fought for the approval of new treatments and protocols, highlighting the need to empower patients in medical decisions.
In Spain, there are designated reference centres for complex diseases like sarcoma, where expertise and necessary resources are concentrated for diagnosis and treatment. These centres, located in large university hospitals or specialised clinics, have multidisciplinary teams of experts in oncology, surgery, radiotherapy, and pathology. Their function is to offer comprehensive and specialised care, ensuring a coordinated and personalised approach to patient care.
However, the fragmentation of the Spanish healthcare system can hinder access to these centres, especially for patients living in remote areas or regions without specialised clinics, resulting in delays in diagnosis and inadequate treatments. It is crucial to promote coordination and collaboration between different regions and healthcare systems to ensure equitable and timely access to high-quality medical care.
