Outlook for patients with TGCT
Prognosis differs mainly based on tumor subtype, location, and recurrence and may be impacted by management approach.1-4
Localized TGCT recurrence rates
are estimated to be up to ~15% when the tumor is completely resected.9,14,15
For most patients with localized disease, surgery can be curative.5,12-14
Even upon recurrence, localized tumors usually are not destructive, and recurrent tumors typically are controlled through repeated surgical removal.2
Diffuse TGCT recurrence rates
are estimated to range from about 20% to 50% after surgical resection is attempted.9,11,12
Patients with diffuse TGCT may require multiple surgeries, which can lead to substantial morbidity of the joint and the need for future joint arthroplasty or, in extremely rare cases, amputation.1,7,16
The potentially long-term course of the disease can be associated with loss of joint function and development of early secondary osteoarthritis.6,17
TGCT can take a toll
Partner with your patients to help minimize the impact of recurrent TGCT
Beyond the implications associated with the risk of functional impairment and the possibility of repeated surgeries, the full impact that TGCT on patients and their daily lives has not been well studied.7
In general, the severity of the physical effects of TGCT is related to subtype (localized or diffuse). However, in one single-center retrospective study, patients with either localized or diffuse tumors scored significantly lower in quality of life–related measures in mental health, vitality, and general health when compared with general population norms. Additionally, patients with diffuse TGCT scored significantly lower in physical functioning.6,a
Understanding the quality of life aspects of TGCT may contribute greatly to counseling discussions with patients7.
Helping your patients understand types of TGCT, management approaches, and related risk of recurrence may help to set their expectations and avoid future surprises that can lead to stress and anxiety.
Working together, you and your patients can make a plan for not only treating their tumors but also for coping with additional challenges presented when living with TGCT.
Understanding their journey
The quotes below highlight the types of challenges faced by some patients with recurrent, diffuse TGCT
Individual reports from people living with TGCT show that there are changes in how they feel—both physically and emotionally—as well as changes in their daily lifestyles, social lives, work, and recreation.
Their personal accounts exemplify the hardships that some people with TGCT face—especially those with recurrent (often diffuse) TGCT, which is more difficult to treat. These insights may be especially informative for healthcare providers who are new to this rare disease.
The impact of TGCT is different for everyone, and this information is not meant to be reflective of all patients with TGCT.b
"It's like an invisible disease…out of sight, out of mind, and so something starts swelling and then you're like, 'Oh my gosh, here we go again.'"
“He had a 40% deficit in his thigh muscle from being in the leg immobilizer, so he had a lot of work to do. But I was just so proud of him and just in awe at the tenacity to say, ‘Okay, Mom, we’re going to do this,’ and I could see the pain when he’s doing the physical therapy but he stuck with it.”
“PVNS is not something that’s going to be handled by a single doctor. You need a more holistic approach to guide you to putting together the appropriate team.”
“If I know I’m going out Saturday night, I’m not going to go grocery shopping Saturday; I’m going grocery shopping on Sunday because [if I go shopping Saturday, then] I can’t walk Saturday night.”
“My body doesn’t tell me I’ve done too much until I’ve done way too much. By the time I know I’m in trouble, I’m in big trouble.”