Tenosynovial giant cell tumors, or TGCTs, are non-malignant, but have plenty in common with cancer in terms of impacting patients’ quality of life, as Sydney Stern, director of Giant Cell Tumor Programs at TGCT Support and the Life Raft Group, explained.
“It can be quite similar,” Stern said during a conversation with CURE® as part of the “Speaking Out” video series. “Patients worry if they’ll ever be able to have children on these drugs, right? That’s a very common concern for patients on systemic therapies with cancer.
“So not only treatments, but also the disease itself can be similar, [with patients] being worried about amputation — while very uncommon at this point in time, patients are worried about it. … A lot of patients are worried about what the future holds for them. A lot of patients with hip disease worry, can they have a baby and carry a baby to term without causing intense amounts of pain, as well as losing your job or missing work because of all the doctor visits or pain itself? So I think some of the experiences are parallel, with complete respect to cancer patients that we don’t deal with the life-threatening aspect. And that’s important to note, with the exclusion of some locations for TGCT that affects the spine.”
Treatments for both TGCT and cancer, Stern noted, can result in similar side effects, such as nausea, facial swelling, and changes to the skin and hair.
“One thing is there’s no metastasis or no concern for metastasis within TGCT, although it can be incredibly debilitating and infiltrative to the local joint area,” Stern said.
Stern also stressed that patients shouldn’t be concerned about their case of TGCT becoming malignant over time.
“The prevalence of those with a malignant form [of TGCT] are so unbelievably beyond under 1% that it’s really hard to capture that group,” Stern said. “Personally, I deal with thousands of patients, I’ve actually only seen one patient in a country where I’m not entirely sure if they have the means to detect truly if that’s what they have versus a different disease or truly have just sarcoma to start. But I will say is it’s exceptionally rare, so rare that I tell patients, ‘Please don’t worry.’”
This program was made possible with support from Deciphera. For more information on tenosynovial giant cell tumors (TGCTs), click here: https://www.tgcttruth.com/
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