Tomek Szczudlo, VP, Global Medical Affairs, Franchise Head, Solid Tumors at Daiichi Sankyo, lists diagnostic delays as a key priority that physicians should be aware of about tenosynovial giant cell tumors (TGCT).

TGCT are a group of rare, benign tumors that involve the synovium, bursae and tendon sheath. While these tumors are benign, they can grow and cause extreme damage to the surrounding tissues. Joint pain, swelling, and decreased range in motion are all common symptoms of TGCT but these may be overlooked as being caused by more common conditions. The typical treatment for TGCT is surgical removal of the tumor but other options, such as the FDA-approved CSF1R inhibitor, pexidartinib, can be effective.

As Szczudlo explains, a manuscript was published earlier this year which primarily focused on baseline patient characteristics from the TOPP registry –a multinational, multicenter, prospective observational study involving 12 tertiary sarcoma centers in 7 European countries, as well as 2 American sites. 

This manuscript addressed the long delays that patients endure to receive a proper TGCT diagnosis, which from onset of symptoms to diagnosis was approximately 17 months. Other key findings include: 

  • 23.9% of TGCT patients in the study required 5 or more visits to different specialists before receiving a proper diagnosis; 
  • 25.5% of TGCT patients required 10 or more physical therapy sessions in the two years prior to baseline; 
  • 91% of patients required hospitalization as a result of their TGCT and 10% of patients required hospitalization 5 or more times in this time; 
  • 56.9% of patients missed work due to their TGCT in the 2 years prior to baseline, with a median of 25.0 days missed;
  • Of the 146 TGCT patients who were employed, 11.6% were forced to change their employment status or retire prematurely due to disease burden. 
  • Domestic help was necessary in 16.0%.

To learn more about TGCT, visit our TGCT Learning Center here.