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Cancer rare: talk more about the issue and reduce the patient's journey are priority challenges

  • Equipe Oncoguia
  • - Data de cadastro: 05/10/2018 - Data de atualização: 05/10/2018


This week, many Us Rare attended the fifth edition of the Brazilian Congress All Together Against Cancer , an event that has about 3,000 participants. One of the meeting's highlights was the panel on the current scenario of rare cancer in Brazil. The presentation was attended by Luciana Holtz, president of Oncoguia Institute , and medical oncologists of the Syrian - Lebanese, Marina Sahade and Rodrigo Munhoz, who is also the Institute of the São Paulo State Cancer ( ICESP ).

In an interview to the entry of Many We are Rare, Munhoz said the challenge of early diagnosis for rare cancer and stressed that there are other issues that also need to be improved in this journey of the patient, from discovery to treatment. "For that we can treat the patient appropriately in the first place, we must have a well done diagnosis. Later, the individual must have access to a referral center that can understand the complexity of that framework and provide appropriate treatment, which is another challenge that we have, "said the oncologist.

The discovery of rare cancer also ends up being further delayed by the fact that, in many situations, the patient has no signs or symptoms. However, some situations can be a warning sign. "More than that, at least once a year, to the routine tests, which are a form of prevention, people need to pay attention to the body. A lump that appears, a ball that appears in the leg, a pain that does not go away after a week or two, for example, serve as evidence for the person to seek for an expert, "says medical oncologist, Marina Sahade.

Who was also highlighted at the 5th Brazilian Congress All Together Against Cancer in São Paulo (SP), was Luciana Holtz, president of the Institute Oncoguia. "It is a topic that deserves a lot of visibility, for the same light, take a darkness there, talk about the types of cancer, talk to people and make the patient feel light and heard. Our role [Institute Oncoguia] is to make the authorities are aware of the seriousness of the rare cancer, which is now unknown to them. We do not need a public policy for rare cancer. We need to make the rare cancer be included in the National Oncological Care Policy ", defends the president of the Institute Oncoguia.

The rare cancer

The low incidence of some cancers hinders the development of research that viabilizariam better conditions for diagnosis and treatment. Brazil still lacks laws defining guidelines able to act in the process of evolving a considered rare cancer.

According to a study released in the United States, there is no universal definition for rare cancers. But recently, the RARECARE, European Union consortium, described rare diseases as 65 cases per 100,000 people per year, while rare cancers are those with less than 6 cases per 100,000 people, also per year. Currently, 71% of cancers that occur in children and adolescents are rare.

Know Sarcoma Soft Part of rare cancer type

The Sarcoma parts soft is a rare cancer that is 8% of children and 1% of neoplasms of brain tumors in adults, and has more than 50 subtypes. For its diverse nature, the diagnosis of soft tissue sarcoma is challenging, which also hampers new advances in the treatment of disease is estimated that approximately 50% of diagnosed patients will develop metastasis. According to the American Cancer Society (American Cancer Society), the disease is responsible for about 5000 deaths per year in the United States (US).

Matéria publicada em Muitos Somos Raros em 27/09/2018



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