TGCT: 3 strategies for coping with misdiagnosis

Tenosynovial giant cell tumors (TGCTs) are a rare type of benign tumor that form in the soft tissues and structures that make up the joints. While they are not cancerous (except in very rare cases), TGCTs can disrupt the normal functioning of the joints and lead to disability.

While exact numbers are unknown, it’s estimated that TGCTs affect fewer than 50 people out of every million.

It’s common for people with TGCTs to spend several years experiencing symptoms before they receive a diagnosis. Misdiagnosis is also common. Joint pain, stiffness, and swelling can initially be misidentified for more common conditions, such as arthritis or overuse injuries.

If you have a TGCT or think that you might, and you have experienced a delay in diagnosis or a misdiagnosis, the following steps and strategies may help.

Continue with treatment

Feelings of distrust, anger, and resentment are a normal response when a person has been to multiple healthcare providers and spent several years just to get a diagnosis. You may feel like there is little that medical professionals can do to help you, or that you are just wasting time and money seeing more healthcare providers.

While these thoughts and feelings are normal, it is important that they do not guide your actions. TGCTs tend to get worse with time or grow bigger over time. This means they lead to more pain, more impairments in joint function, and a greater possibility of disability.

TGCTs can be treated. Often, the most important step is finding a healthcare provider who understands the condition. If you are currently looking for a healthcare provider, the patient advocacy organization TGCT Support (tgctsupport.org) maintains a list of TGCT specialists in the U.S.

Keep learning about TGCTs

This is an important aspect of managing any health condition—learn as much as you can. It is especially important when you are diagnosed with a rare condition. The more knowledge you have, the better you will be able to communicate with your healthcare providers, understand your treatment options, and advocate for yourself.

Here are some strategies that may help:

• Dedicate a small amount of time each week to reading about TGCTs. Bookmark or keep a list of articles or other materials that you’ve read and that you want to read.
• Write down anything you do not fully understand or any questions you have. You can bring these up at your next appointment.
• Try to stay up to date on research into treating TGCTs. New approaches to therapies are being worked on and progress is being made. The first medication indicated for the treatment of TGCTs was approved in 2019, and other drugs are being studied.
• Try to connect with other people who have TGCT, they can be a good source of knowledge and also a good source of emotional support.

Prioritize your mental health

This cannot be emphasized enough. Chronic or recurring pain, living with uncertainty, and being diagnosed with a rare disorder are associated with worse mental health, and in some cases, an increased risk of mental health disorders.

TGCTs check all of these boxes— they are rare, they are often painful, and people with TGCTs must cope with uncertainty.

Updates on your moods and mental health should be a part of your appointments with your healthcare providers. While TGCTs affect different people in different ways, being proactive about mental health can have its benefits.

• If you’re not sure where to start, start simple. Keep a journal with notes on how you feel each day, including your moods, stress level, and anything you find difficult. Also keep notes on things that are going well and things that make you happy.
• Consider working with a provider who specializes in mental health, such as a therapist or counselor. Aside from coping with things like negative thoughts, uncertainty, and stress, therapy can have other potential benefits—better confidence, better communication, better problem solving.
• If you can, try to connect with other people who have TGCTs, or even people who are coping with a different rare condition who might be experiencing some of the same challenges you are facing.

Another important aspect of mental health is making time for yourself. While it is important to be proactive in your treatment, it’s also important to take breaks to focus on other areas of your life. Dedicate time to friends, family, hobbies, and activities that you value.