Madrid, 12 July, 2023. Sarcoma is a type of cancer that can originate in both soft tissue and bone1. In Spain, just over fifty new cases of bone sarcoma are diagnosed annually1, while its estimated incidence in soft tissue throughout the European Union is around five new cases per 100,000 inhabitants per year2. Sarcoma is a rare pathology that can occur at any age and includes more than one hundred subtypes. Essentially, it can be divided into soft tissue sarcomas and skeletal sarcomas.
Dr. Ricardo Cubedo, chief oncologist of the Multidisciplinary Sarcomas Unit at MD Anderson Cancer Center Madrid and one of the few experts in this field at a national level, says that this type of cancer, although uncommon, is a tumour that presents a high degree of heterogeneity and therapeutic complexity. Its rarity has meant research is scarce and as a result, there is a dispersion of diagnostic and treatment criteria, while accessing specific drugs for this disease can also be problematic. Sarcomas can originate in fatty tissue, muscle, tendons, blood vessels, nerves, and even deep skin tissues. In some cases, they can metastasize to other parts of the body.
For this reason, Cubedo recommends that patients suffering from this disease should receive treatment by a multidisciplinary team of experts at a specialised centre.
Patient associations agree with the doctor's opinion. For example, María Susmozas, president of the Iker Association (research into myxoid liposarcoma and assistance with palliative care), explains that sarcoma patients sometimes find themselves in a "healthcare limbo". According to Susmozas, this situation translates into endless waits for their diagnosis, a lack of standard guidelines for their treatment, a shortage of drugs, problematic access to already approved drugs and difficulties with referral to specialist centres when necessary.
We should note that these centres have played a fundamental role in the treatment of this disease in Spain since 2017. Their introduction has seen a significant advance in treatment of patients with sarcoma, as they have been set up with the aim of centralising care, providing a multidisciplinary diagnostic-therapeutic approach and as a result, positively impacting recovery and survival.
Iara Mantillán, President of ASARGA (the Sarcomas Assistance Group Association) believes that "referring patients to a specialist unit is essential, because with such a rare condition it is much better to transfer the patient to a centre where they have already seen and treated similar or related cases". In this way, Mantillán goes on, "patients can receive a wider range of treatment and perhaps extend their survival".
For Juan Antonio Suárez, President of the VYDA association, "the work of these centres also promotes the effectiveness of sarcoma studies, centralising patients and thereby maximising the benefits of the research available, albeit scarce."
From a medical point of view in the words of Dr. Ricardo Cubedo “there is little chance of quality research without quality care." Cubedo says that the situation today is largely unchanged from 10 years ago due to the lack of information, and consequentially we have seen little progress in the treatment of this oncological pathology. "For good research projects to flourish we need places where a significant number of sarcomas are seen, assessed and effectively treated. When that happens, research that is more definitive will begin to emerge”, explains the MD Anderson Madrid oncologist.
Medical needs of sarcoma patients that prompt a new approach to this pathology
In the words of the president of the VYDA: "The difficulties faced by sarcoma patients begin right from the start due to the lack of an agreed protocol for diagnosis". In his opinion, there are no clearly defined criteria for sarcoma. For this reason, several patient associations are working to promote projects designed to unify the procedure for the diagnosis of this disease.
One example is the ASARGA who, subsequent to their first follow-up meeting with the Ministry of Health held in March, presented the Imperas Project, which aims to collect information and guide health authorities towards making effective decisions on strategies for the diagnosis and treatment of patients with sarcomas in Spain.
Dr. Cubedo reiterates that the treatment and follow-up of sarcoma should always be carried out by specialists in this pathology, since the correct approach can significantly influence the evolution of the condition and cure of the patient. With this in mind, the representatives of the VYDA and the Iker association add that "without a doubt" sarcoma patients need multidisciplinary assistance that also includes psychological care, nutritional support and the presence of a senior nurse who can "accompany" the patients and their families throughout the stages of the disease.