Center for Rare Tumors

One in five cancer patients in the Netherlands (20%) has a rare tumor type. This affects around 20,000 new patients every year. If less than 1021 new patients are diagnosed with a particular tumor type every year, we consider it a rare tumor. More than 100,000 people in the Netherlands are currently dealing with a rare type of cancer or did in the past.

Research shows that the survival rates of patients with rare cancer types are much lower on average than those of patients with common tumor types. The gap continuously gets bigger because rare cancer types are often not discovered on time, which leads to later diagnoses. Chances of successful treatment and survival are much lower as a result. Rare cancer types also see much less research, which means that there are very few new treatment options or prescription drugs for these patients.

National expert centers in rare tumors

To combat these issues, several expert centers have been established throughout the Netherlands. This is a first step towards better, integrated care for patients with rare tumor types. The Netherlands Cancer Institute houses ten of these expert centers – we are experts in particular cancer types, or groups of rare types, and will be the only, or one of the few hospitals in the country to offer treatment for these particular tumor types.

• Sarcoma Expert Center
  Soft tissue sarcomas
  Gastrointestinal stromal tumor (GIST)
• Expert Center of familiar GI tumors:
  Hereditary colon cancer / Lynch syndrome
  Polyposis coli
  Hereditary diffuse gastric cancer
• Expert Center of Neuroendocrine carcinomas
  In collaboration with Utrecht University
• Expert center for rare urological diseases:
  Testicular cancer
  Penile cancer
• Center of rare head and neck tumors:
  Nasopharyngeal carcinoma
  Laryngeal carcinoma
  Cancer of the salivary glands
• Expert Center for Hereditary Cancer
  Hereditary breast cancer
  Hereditary ovarian cancer
• Rare Skin Cancer Center
  Merkel cell carcinoma
• Centre for rare nervous system tumors
• Center of rare GI tumors
  Anal cancer
  Esophageal cancer
• Expert Center for rare gynecological tumors in collaboration with Amsterdam UMC as part of the Center for gynecological oncology Amsterdam (CGOA).
  Ovarian cancer
  Vulvar carcinoma
  Rare tumors of the corpus uteri (uterine cancer)
  Cervical carcinoma
  Trophoblastic diseases ((pre)malignant abnormalities of the placenta)