Welcome to the new Gustave Roussy website

A new website designed to offer you a simpler, clearer, and more intuitive experience. Patients, caregivers, healthcare professionals, and donors: find information, news, and services more easily.

Types of Cancer

Rare Cancers

Director:
Prof. Antoine Italiano

Understanding the Disease

A cancer is considered rare when it affects children and adolescents, or, in adults, an unusual site. 

Cancers in Children and Adolescents

By definition, cancers that affect children and adolescents are rare. Among pediatric cancers, there are rare tumors that account for fewer than 10 cases per year in France. These tumors can affect various parts of the body:

  • Esophagus
  • Stomach
  • Carcinoids
  • Small intestine
  • Colon and rectum
  • Pancreas
  • Kidneys
  • Head and Neck
  • … 

→ Learn more about cancers in children and adolescents.

Rare Cancers in Adults

Rare cancers in adults can manifest in various ways:

  • In organs or parts of the body where cancer is unusual, with rare cellular or tissue characteristics.
  • In an organ or part of the body that is very rarely affected by tumors. This is the case, for example, with the salivary glands. 

Rare Cancers: By the Numbers

  • 6 out of every 100,000 people

    A cancer is considered rare when it affects fewer than 6 people per 100,000

  • 200

    Rare cancers encompass more than 200 diseases 

  • 22%

    Rare cancers account for 22% of cancer patients

Prof. Antoine Italiano – Specialist in rare tumors.

Most healthcare professionals are not accustomed to dealing with these conditions. For patients, this is a double burden: they are suffering from cancer and are unable to find answers to their questions. It is therefore necessary to refer them to specialized centers, such as Gustave Roussy. 

Pr Antoine Italiano

Coverage

Given their unique characteristics, rare cancers require highly specialized care. Gustave Roussy, the leading French and European center in the fight against cancer, recognized for its expertise in rare and complex tumors, treats patients—both adults and children—with rare cancers at all stages of the disease. 

Care for Children and Adolescents

Children and adolescents with rare cancers are treated by the Department of Pediatric and Adolescent Oncology. There, they receive tailored and specialized care.

New Strategies for Rhabdomyosarcoma of the Head or Neck

At Gustave Roussy, patients with rhabdomyosarcoma of the head or neck can benefit from an innovative surgical technique combining oncological and plastic surgery, as well as proton therapy. “These strategies achieve an 80% local disease control rate, compared to 50 to 60% with standard techniques,” according to Prof. Véronique Minard-Colin, a pediatric oncologist. 

Expertise in the Treatment of Genitourinary Sarcomas

For more than 20 years, Gustave Roussy has developed internationally recognized expertise in the local treatment of genitourinary sarcomas in young children. This approach provides excellent disease control and, above all, minimizes long-term effects. The treatment combines brachytherapy and surgery.

→ Learn more about Pediatrics

Care for Adults

Adult patients with rare cancers receive personalized, innovative, and comprehensive care within the Department of Medical Oncology.

→ Learn more about the Department of Medical Oncology 

Gustave Roussy, a leader in the treatment of rare cancers

Since 2009, care for rare cancers has been organized through national clinical networks, accredited by the National Cancer Institute (INCa) and comprising various healthcare facilities. 

Gustave Roussy heads five of these networks: 

  • Refcor, for rare ENT cancers
  • Rythmic, for thymus cancers
  • Carare, for rare kidney tumors
  • Tuthyref, for treatment-resistant thyroid cancers
  • Tenpath, for the histopathological diagnosis of neuroendocrine tumors

The hospital is also involved in three other national networks: 

  • Netsarc for sarcomas
  • TMRO for rare ovarian cancers
  • Comete for adrenal tumors

These networks ensure that every patient, even those with rare cancers, has access to specialized expertise.

Research That Is Making Progress

To advance understanding of these cancers and their associated treatment options, Gustave Roussy is actively dedicated to developing new therapies specifically targeting these diseases. Thanks to its strong involvement in networks and the collaborative efforts between its organ-specific committees and its Department of Therapeutic Innovation and Early-Phase Trials (DITEP), the Institute is influencing pharmaceutical companies to include cohorts of patients with rare cancers in their clinical trials.

New Prospects Thanks to Immunotherapy

Significant advances may emerge in the field of immunotherapy. A rare digestive cancer, cholangiocarcinoma—which until now had no treatment—has benefited from a promising therapy: “New immunotherapy approaches are revolutionizing oncology. They are already helping patients with common forms of urological cancers. But there is still much to explore for rare cancers, such as testicular or penile cancer, for example,” explains Prof. Laurence Albiges, head of the Department of Medical Oncology.

For further reading