Symposium ESMO Sarcoma & GIST in Milan, Italy, brought together about 450 international experts to discuss rare cancers.
Rare tumors, such as sarcomas, pose additional challenges beyond those faced by patients with the more common types of cancer, since rare cases of the disease is not possible to obtain sufficient experience in diagnosis and treatment. "The lack of information about the disease, treatment options are limited and the lack of attention given to the health policy of this rare cancers - factors that significantly affect the results," - said Ornella Gonzato, president and founder of the Associazione Paola. - Patients with sarcoma is especially important likely diagnosis. Symptoms are often interpreted incorrectly. "
Gonzato told that one day a young woman came to the doctor due to swelling in the knee. Gloria played tennis, and the doctor prescribed anti-inflammatory medication and rest, having concluded that the injury caused by intense exercise. Several months passed, but the situation did not improve, pain and swelling in the knee does not subside. "That's when she decided to look for information on the Internet and found a site Associazione Paola. Reading about the disease, she recognized some of the symptoms - continues Gonzato. - Gloria got in touch with the association and was immediately sent for examination. "
After another series of tests was diagnosed - Ewing's sarcoma. Now Gloria is held long-term therapy. According Gonzato, many patients are wondering where to go to get a proper diagnosis and appropriate treatment.
At European level, the European campaign on rare diseases cancer is committed to providing the best support to cancer patients. This network of centers based on voluntary co-operation of reference institutions across Europe involved in cases of rare cancer. They help patients get timely diagnosis, appropriate treatment and access to innovative clinical research.
In the European Union by rare tumor types 198 suffers 4.3 million people, accounting for 24% of annual diagnoses. "For soft tissue sarcomas, as well as for the majority of rare types of cancer, providing high quality care and a multidisciplinary approach to patients is a serious problem.
Creation of reference centers on rare cancers that pool resources and share best practices in their field, the first step to solving this problem.