The impact

of tgct

destruction

TGCT (tenosynovial giant cell tumor) is a noncancerous condition, but at EMD Serono, we understand the profound impact it can have on a person’s physical and mental health.1,2

THE IMPACT OF TGCT CAN OFTEN BE OVERWHELMING

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PHYSICAL IMPACT

From pain and swelling to stiffness and reduced range of motion—the symptoms of TGCT can be truly debilitating1,3

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PHYSICAL IMPACT

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More than 80% of people with TGCT said the symptoms disrupted their daily life, affecting their ability to focus and do physical activities, in a recent study.3

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OCCUPATIONAL IMPACT

Symptoms of TGCT can take a real toll on people’s lives, influencing career choices, decisions about where to live, and the ability to spend time with loved ones3,4

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OCCUPATIONAL IMPACT

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57% of people with TGCT missed work due to their condition, with an average of 5 weeks over 2 years, in a study of 116 people8*
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~1 in 4 people with TGCT changed their careers or retired early due to their condition often because of pain3

*

57% of the people in the study lost between 1 and 75 days of work due to TGCT. Half missed more than 5 weeks and the rest missed less than 5 weeks.8

BEYOND THE PHYSICAL

The mental health impact of chronic rare diseases can be serious. People living with rare diseases experience significantly higher rates of depression and anxiety compared with the general population.5-7

TGCT CAN GET WORSE OVER TIME

Although TGCT is typically a slow-growing tumor, the longer a person has symptoms, the greater their risk of joint damage and bone destruction.1,3

~1 IN 6 PEOPLE

with diffuse TGCT† may have tumor growth within 2 years when left untreated2

~1 IN 5 PEOPLE

with diffuse TGCT† eventually developed osteoarthritis (a type of arthritis associated with bone erosion) that occurred within about 20 years when left untreated2

†

Diffuse is a type of TGCT that tends to affect larger joints like hip, ankle, or knee joints.

GETTING A TGCT DIAGNOSIS CAN BE A JOURNEY

It can take a long time—up to 3 or 4 years for some people—to be diagnosed with TGCT, giving this insidious tumor time to potentially cause serious joint damage before treatment begins.8,9

If you are experiencing signs of TGCT, ask your doctor about getting an MRI, which can lead to an accurate and timely diagnosis.1

GET MORE INFORMATION TODAY AT TGCT SUPPORT! 

GET MORE INFORMATION TODAY AT TGCT SUPPORT!

TGCT Support provides information on symptoms, diagnosis, treatment options, as well as support groups for the TGCT community.

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THINGS ARE CHANGING IN TGCT

THINGS ARE CHANGING IN TGCT

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REFERENCES

1. Stacchiotti S, Dürr HR, Schaefer IM, et al. Best clinical management of tenosynovial giant cell tumour (TGCT): a consensus paper from the community of experts. Cancer Treat Rev. 2023;102491:1-10. doi:10.1016/j.ctrv.2022.102491. 2. Spierenburg G, Staals EL, Palmerini E, et al. Active surveillance of diffuse-type tenosynovial giant cell tumors: a retrospective, multicenter cohort study. Eur J Surg Oncol. 2024;50(2):107953. doi:10.1016/j.ejso.2024.107953. 3. Stern S, McKenzie PF, Bernthal N, et al. Localized and diffuse tenosynovial giant cell tumor: real-world results from a patient observational registry. Future Oncol. 2025;21(12):1501-1510. doi:10.1080/14796694.2025.2488635. 4. Data on file. EMD Serono. 5. World Health Organization. Risks to mental health: an overview of vulnerabilities and risk factors. Published August 27, 2012. Accessed October 3, 2025. https://cdn.who.int/media/docs/default-source/mental-health/risks_to_mental_health_en_27_08_12.pdf?sfvrsn=44f5907d_10&download=true. 6. Shire. Rare disease impact report: insights from patients and the medical community. Published April 2013. Accessed October 3, 2025. https://globalgenes.org/wp-content/uploads/2013/04/ShireReport-1.pdf. 7. National Health Service England. Adult psychiatric morbidity survey: survey of mental health and wellbeing, England, 2014. Published September 29, 2016. Accessed October 3, 2025. https://digital.nhs.uk/data-and-information/publications/statistical/adult-psychiatric-morbidity-survey/adult-psychiatric-morbidity-survey-survey-of-mental-health-and-wellbeing-england-2014. 8. Bernthal NM, Spierenburg G, Healey JH, et al. The diffuse-type tenosynovial giant cell tumor (dt-TGCT) patient journey: a prospective multicenter study. Orphanet J Rare Dis. 2021;16(1):191. doi:10.1186/s13023-021-01820-6. 9. Nishida Y, Tsukushi S, Nakashima H, et al. Osteochondral destruction in pigmented villonodular synovitis during the clinical course. J Rheumatol. 2012;39(2):345-351. doi:10.3899/jrheum.110730

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