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Tenosynovial giant cell tumors (TGCTs) refer to rare types of tumors that form on the tissues that make up the joints. In the majority of cases, TGCTs are benign (non-cancerous), but they can be painful, can cause swelling and stiffness in the joints, and can lead to disability. In most cases, TGCTs are treated with surgery. Unfortunately, recurrence is common, and people who have TGCTs often require follow-up surgeries to address tumors that return.
Undergoing any type of surgery demands a lot from your body. It also demands a lot from your emotional and mental health—especially when you have undergone surgery before and learn that you need to undergo surgery again.
Here, we look at some strategies that can help you cope with the emotional and mental burden of having joint surgery again.
Know what to expect
One of the most challenging aspects of living with a health condition is the uncertainty—will symptoms return, will symptoms get worse, will I need more surgery, will that surgery go well? It’s easy to be overwhelmed by questions like these.
While you may not be able to see into the future to find answers to these questions, there are many questions that you can answer. Before your surgery, ask your healthcare providers to explain the procedure, including:
- What surgical methods and tools are being used?
- What experience does your surgical team have treating TGCTs?
- Are there any other treatment options that could be used? (While surgery is the most commonly used treatment for TGCTs, radiation and medications are also used).
- What is the goal of the surgery?
- What are the risks of the surgery?
- Will anesthesia be used? What kind?
- Will you need an overnight stay at a hospital?
- How long will recovery take?
- What will the recovery process entail? (Ask about pain medication, physical therapy, and follow-up care).
- What are the potential complications?
- How much will the surgery cost?
- Are there other surgery-related costs you should be prepared for?
- What information do your HCPs need from you? (Such as a list of medications you take, answers about your medical history, paperwork).
Having answers to these questions can give you a better sense of control. If you are having doubts or uncertainties, it may also be worth seeking a second opinion—when undergoing any procedure, it’s extremely important to have confidence in your healthcare team.
Some of the questions above may need to be answered by your insurance company—such as questions about the cost of the procedure (and what part of that cost you are responsible for), whether preauthorization is needed, and any paperwork that needs to be filed.
When it comes to healthcare related paperwork (including finances), it’s best to stay as organized as possible—this can give you a better sense of control, reduce uncertainty, and free up your mind and time when you are in recovery.
Have a support system
Support is important anytime you are undergoing a medical procedure. Because TGCTs are different for everyone—physically, emotionally, and mentally—different people will need different types of support.
When you are thinking about the type of support you need, it can be helpful to look at support as two broad categories:
- Practical support refers to tangible acts, such as a friend or loved one accompanying you to your procedure, helping with errands or household chores, or preparing meals while you are in recovery.
- Emotional support is when a person is there to listen, provide a needed distraction, and be there with you when you are working through what you are feeling.
You may also want to look for a support group for people who have TGCTs or people who are recovering from surgery. Connecting with other people who have a similar experience to your own can help you cope with the emotional and mental burden that accompanies joint surgery.
Make mental health a priority
Consider working with a mental health practitioner, such as a therapist, counselor, or healthcare social worker. TGCTs on their own can be difficult to cope with for numerous reasons—they can be painful, expensive, and interfere with your life in many ways. Changes in psychological wellbeing (including anxiety and mood disorders, such as depression) have also been associated with surgery and anesthesia.
When it comes to understanding and addressing issues that affect your mental health, there is no better source of information than a healthcare provider with training and experience.
Medically reviewed in June 2021.
Sources:
NCI Dictionaries. "Tenosynovial giant cell tumor."
National Organization of Rare Disorders. "Tenosynovial Giant Cell Tumor."
TGCT Support. "Surgery."
John H. Healey, Nicholas M. Bernthal, and Michiel van de Sande. "Management of Tenosynovial Giant Cell Tumor: A Neoplastic and Inflammatory Disease." Journal of the American Academy of Orthopaedic Surgeons; Global Research & Reviews, 2020. Vol. 4, No. 11.
Medical News Today. "Depression after surgery: What you need to know."
Johns Hopkins Health. "Questions to Ask Before Surgery."
The Center for Orthopedic & Neurosurgical Care & Research. "Questions to Ask Before Surgery."
Drugs.com. "Medications for Tenosynovial Giant Cell Tumor."
Medicare.gov. Getting a Second Opinion Before Surgery."
HealthCare.gov. "Preauthorization."
Care Council NSW. "Practical support."
Care Council NSW. "Emotional support."
Monique Josephine Mastboom, Rosa Planje, and Michiel Adreanus van de Sande. "The Patient Perspective on the Impact of Tenosynovial Giant Cell Tumors on Daily Living: Crowdsourcing Study on Physical Function and Quality of Life. Interactive Journal of Medical Research, 2018. Vol. 7, No. 1.
HCPLive. "Are You Paying Attention to Postoperative Depression?"
