How to Manage Scanxiety During Dermatomyositis Screenings

It is completely normal to experience severe anxiety, often called “scanxiety,” before and during your cancer screenings. Because dermatomyositis (DM) is strongly associated with an increased risk of underlying malignancy, regular cancer screenings—which may include CT scans of the chest, abdomen, and pelvis, PET scans, or targeted ultrasounds—are a critical part of your recommended care ^[1][2]. However, this frequent monitoring can trigger profound psychological distress, sleep disturbances, and fear ^[3][4]. Scanxiety is a recognized clinical phenomenon that affects many patients undergoing medical imaging, and acknowledging it is the first step toward managing it effectively ^[5][6].

Understanding Scanxiety in Dermatomyositis

Scanxiety typically occurs throughout the screening process but tends to peak during two specific windows: the days leading up to the scan and the waiting period between the scan and receiving the results ^[4][6]. For people living with DM, this anxiety is often compounded by the knowledge that their condition carries a baseline risk for cancer, with the exact screening schedule depending on their specific autoantibodies (such as anti-TIF1-gamma or anti-NXP2) and time since diagnosis ^[2][7].

Research shows that this anticipatory anxiety can significantly impair your emotional well-being and overall health-related quality of life ^[5][8]. The burden of these screenings—both the physical time required and the emotional toll—is an important factor that experts consider when evaluating the patient experience in DM care ^[1].

Evidence-Based Strategies for Managing Scanxiety

While you may not be able to eliminate scanxiety entirely, there are several practical, evidence-based strategies you can use to minimize its impact on your life ^[9].

Control the Timeline of Results

The waiting period for results is often the most distressing phase of the screening process ^[3][5]. Minimizing the interval between your scan and the delivery of results is proven to reduce the duration of scanxiety ^[5].

• Schedule a concrete follow-up: Before you even have the scan, schedule an appointment with your rheumatologist or primary doctor to discuss the results.
• Bring a support person: Bring a trusted family member or friend to the follow-up appointment. When anxiety is high, it is easy to forget what the doctor says, so having a second set of ears is invaluable.
• Clarify communication methods: Ask your doctor exactly how and when you will receive the results (e.g., via a patient portal, a phone call, or an in-person visit).
• Decide on portal use: Many health systems release test results to patient portals immediately. Decide in advance if you want to look at a highly technical radiology report on your own, or if you prefer to wait to review it with your doctor to avoid panic from misunderstood medical jargon.

Practice Present-Focused Coping

Anxiety thrives on “what-ifs” and future-oriented thinking. Evidence suggests that present-focused cognitive strategies—techniques that anchor your attention to the current moment rather than future outcomes—are particularly effective in reducing scan-related anxiety ^[10].

• Mindfulness and grounding: Use specific grounding techniques when you feel overwhelmed. A common approach is the “5-4-3-2-1 method”—naming five things you can see, four you can touch, three you can hear, two you can smell, and one you can taste.
• Distraction techniques: Engage in absorbing activities (like reading, listening to music, or hobbies) during the wait ^[11].

Communicate Your Needs

Effective communication between you and your healthcare providers builds trust and improves psychological resilience ^[12][13]. If your care team is aware of your scanxiety and physical needs, they can offer targeted support ^[14][15].

• Ask for physical accommodations: Lying flat and still on a hard CT or MRI table can be incredibly painful if you have severe muscle weakness or inflamed skin rashes on your back. Tell the technologist about your physical limitations and ask for accommodations, like extra pillows, help getting on and off the table, or taking breaks.
• Understand the mechanics: Ask the technologist exactly what the scan will involve, such as how long it will take, whether there will be loud noises, or if you will need to hold your breath. Knowing the mechanics reduces the fear of the unknown ^[9].
• Consider pre-medication: If your anxiety is severe, particularly for claustrophobia in MRI machines, talk to your doctor beforehand about the possibility of a mild, one-time anti-anxiety medication for the procedure itself.
• Seek professional support: If scanxiety is routinely preventing you from sleeping or interfering with your daily life, ask your doctor for a referral to a health psychologist or a therapist who specializes in medical anxiety and chronic illness ^[5].