Management of Patients with Aggressive Pituitary Tumours & Carcinomas

This project was kindly supported by a grant from Ipsen.

ESE Special Interest Group on Aggressive Pituitary Tumours/Carcinomas

Chairs: Gerald Raverot & Pia Burman 

Members: Olaf Dekkers, Ann McCormack, Stephan Petersenn, Vera Popovic, Marily Theodoropoulou and Jacqueline Trouillas. 


In July 2015, an ESE Special interest Group was established to propose a definition of aggressive pituitary tumours, develop guidance on therapeutic indication of temozolomide treatment for aggressive pituitary tumours and to evaluate the results of alternative clinical therapies on these tumours.

In 2016, this SIG carried out a Europe-wide survey of specialists treating patients with aggressive pituitary tumours, asking questions about treatment courses and patient outcomes.

Following the analysis of this survey, a comprehensive literature review was carried out to develop the ESE Clinical Practice Guideline on the Management of Patients with Aggressive Pituitary Tumours, which was presented during the European Congress of Endocrinology in 2017 in Lisbon.

Recommendations for treatment to be presented at ECE 2017 and published in EJE


Against this background, in 2020 ESE organised a second survey “A European Survey for clinical diagnosis and management of Aggressive Pituitary Tumours and Pituitary Carcinomas, of which the main aims included:

  1. To understand the optimal duration of treatment with temozolomide (TMZ) in responding patients. 
  2. To obtain more data on TMZ regimens, in particular monotherapy or TMZ given concurrently with radiotherapy for the first 6 months. 
  3. To understand the effects of other treatments in patients who failed TMZ, for instance the effect of immune checkpoint inhibitors. 
  4. To obtain more information on carcinomas
  5. To understand the characteristics of aggressive pituitary tumours 


From this survey we expect to obtain meaningful answers to key clinical questions on diagnosing and management of these challenging tumours. The results of the planned survey will inform and improve patient care for aggressive pituitary tumours and pituitary carcinomas.

We would like to thank all the clinicians how took the time to contribute to this survey, data collection has now finished.