In rare form: Kate’s TGCT journey
(BPT) - From practicing ballet at a young age to dancing and cheerleading for two professional sports teams, Kate has always been passionate about expression through movement. Unfortunately, Kate’s activities were interrupted in 2016 when, at age 30, she began to experience intermittent pain and swelling in her right knee. At first, Kate thought this was a result of her demanding dance routines; however, she then began to experience a debilitating loss of mobility.
“I would walk — my knee would lock on its own, and I would fall. There were days where I was crawling to the bathroom. I didn’t know what it was.”
Concerned and confused, Kate went to see her general practitioner. While her doctor didn’t think the swelling was anything serious, Kate was referred to an orthopedist. She shared her symptoms, which had worsened, noting she could no longer bend her knee past 90 degrees, which made it impossible for her to do certain dance moves and yoga poses. A week later, Kate was diagnosed with diffuse tenosynovial giant cell tumor (TGCT).
TGCT, also known as giant cell tumor of the tendon sheath (GCT-TS) or pigmented villonodular synovitis (PVNS), is a rare, typically benign tumor (not cancerous) occurring in or around a joint. It is subcategorized into two types: localized, which is more common and accounts for 80% to 90% of cases, and diffuse, which accounts for 10% to 20% of cases.,
TGCT can cause pain, swelling and stiffness in the affected joint. TGCT can reduce the function of small and large joints, including the knee and hips, and in some cases, it can damage them. Surgery may be a cure for many people with TGCT. For some, however, tumors may grow back after surgery.
Researchers don’t know exactly how many people are diagnosed with TGCT each year. However, a study done in the Netherlands was used to help calculate estimates of how many people are diagnosed with TGCT worldwide. It is estimated that only 43 people of every million are diagnosed with TGCT worldwide each year.
After her diagnosis, Kate received a referral to an orthopedic oncologist who recommended immediate surgical removal of the tumor. She received surgery on her right knee in June of 2017, followed by a second surgery in August of that year.
“After several long months and multiple doctor visits, I was thankful to be under the care of an orthopedic oncologist who was specialized to treat TGCT.”
In December 2018, an MRI revealed a recurrence in her knee, but her orthopedic oncologist recommended against another surgery, as he felt the chances of the tumor spreading further were low. Fortunately for Kate, her recurrence appears to be stable. A follow-up doctor visit in June 2019 revealed that the tumor has not progressed since her last visit. Kate feels fortunate that her condition was caught early on.
Kate is extremely motivated and works with her care team to stay active. She has found great joy in Pilates, calling it her “saving grace,” and has improved well beyond her doctor’s expectations.
“They said I’d never get back to past 90% [knee bend]. Well, I showed him,” Kate said. “I can do many different yoga poses. I can tell one knee is puffier than the other. But even that hasn’t been an impediment.”
Knowing the difficulties she faced throughout her journey to diagnosis and treatment, Kate takes every opportunity to share her story and hopes to help build a support network for TGCT patients.
“It’s really important that you have a care team you can count on when you are dealing with something like this that can impact your life so significantly,” said Kate. “They can provide the emotional, physical and medical support you need. I am very grateful I had people who were ready and able to help.”
If you are experiencing signs of TGCT, contact your doctor, who may be able to refer you to a specialized center. For more information on TGCT, treatment options and resources, visit TGCTFacts.com.
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