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Tenosynovial giant cell tumors (TGCTs) are a rare type of benign tumor that can affect a variety of different joints throughout the body. Like other tumors, they are collections of abnormal cells. While TGCTs are typically not cancerous (though they can be in rare cases), they can cause a range of symptoms, including pain, swelling, and joint instability. These symptoms can have a significant impact on a person’s quality of life.
The preferred treatment for TGCTs is surgery to remove the tumors and the affected tissue in the joints. Here, we look at the different healthcare providers you may consult during treatment.
Orthopedic oncologist
Orthopedic oncologists specialize in the treatment of benign and cancerous tumors that affect the bones and soft tissues. In addition to surgery, orthopedic oncologists may oversee other treatment options. Radiation therapy is sometimes used in addition to surgery to treat TGCTs.
Multidisciplinary team
Ideally, you want to work with a multidisciplinary team of healthcare providers with different specialties. A multidisciplinary team may include orthopedic surgeons, oncologists, radiologists (who specialize in medical imaging), pathologists (who specialize in the biology of abnormal cells), pain management specialists, physical therapists, and occupational therapists.
Surgery for TGCTs
While surgery is the preferred treatment for TGCTs, there are no official surgical guidelines for the condition, and each case is somewhat unique. The type of surgery used will depend on the joint or joints that are affected, the size of the tumors, and whether there is one tumor (localized) or several (diffused). Healthcare providers will also take into account other factors about a person’s health when determining the best surgical option or if surgery is an option.
Medication for TGCTs
There is also a medication approved for treating TGCTs, though it is only used in cases where a person is not able to have surgery and the tumors are causing severe symptoms or impairment. The medication comes with a black box warning for serious and fatal liver injury. The healthcare providers prescribing the medication must follow a Risk Evaluation and Mitigation Strategy (REMS) program to reduce this risk.
Finding healthcare providers
If you are looking for healthcare providers to treat TGCTs, you may want to begin with the usual avenues. You can ask your current healthcare providers for a referral (which some insurance plans require when seeing a specialist). You can check with your health insurance provider to see what orthopedic surgeons are in network for your insurance plan. You can also check the website for The American Academy of Orthopaedic Surgeons, which has a search tool that allows you to find surgeons by geographic location and specialty.
