Patients with TGCTs, or tenosynovial giant cell tumors, often have to deal with pain and discomfort as a result of the condition, a rare benign tumor that can cause inflammation, pain and joint mobility.
Solange Sierra, APRN, of Sylvester Comprehensive Cancer Center, understands that reality well. In addition to her role as a nurse, for years Sierra dealt with the effects of TGCT as a patient.
“For many years, I was complaining of pain,” Sierra said. “And I was disregarded. I was told that I was crazy by an orthopedic doctor once, and they really did not take me seriously. I don’t know if it’s because I was a woman. At that age, I was a young woman, I was in my 20s. And I don’t know if it was because nobody’s familiar with TGCT because it’s so rare.”
Sierra eventually received a diagnosis, and treatment via surgery. In a conversation with CURE® as part of the “Speaking Out” video series, she advised patients with TGCT to speak honestly with their care team about the pain they are experiencing.
“Make sure that whenever you see a doctor or a nurse when they’re doing your assessment, be honest in [discussing] the pain,” she said. “A lot of the TGCT patients, they’ve suffered [from] this for so long, that they get used to the pain. And when you have pain from TGCT most of the time, it’s something that it’s not high enough to take strong medications, but it’s strong enough to affect your activities of daily living.
“So mention it, speak about it, don’t feel afraid, and once you tell them about your pain, it really can make a difference because there’s a lot of things that nurses can teach you about how to manage it. And sometimes patients suffer so much from pain, and they’re just afraid of saying that they go on [with] their life living like this and it’s not fair. … It can be very damaging, having these tumors. So speak out and just share everything you feel with the nurses and your doctors.”
Elsewhere in the interview, Sierra discussed her recovery from TGCT surgery, the importance of self-advocacy and finding support, treatment advancements for TGCT such as the oral medication Turalio (pexidartinib) and current clinical trials.
This program was made possible with support from Deciphera.
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This program was made possible with support from Deciphera. For more information on tenosynovial giant cell tumors (TGCTs), click here: https://www.tgcttruth.com/
