How to Navigate Multiple Myeloma Relapse Anxiety

Know What You Can Control

• Attend appointments. Talk to your care team about how often you’ll be monitored and attend every follow-up visit.
• Stay informed. Ask your care team about which tests are used to track your health and what test results indicate that you’re relapsing.
• Watch for changes. Ask your care team which symptoms to watch for so you know when to call the office.
• Discuss future options. Ask your care team what the next step will be if your blood work or scans indicate that you’re relapsing.

Taking these steps can help you feel more prepared for the future when the road ahead is uncertain. "Once you learn what the plan is going to be, you can start to prepare and build your life around it. And that’s when anxiety often starts to get better,” says Dr. Chilcote.

Manage 'Scanxiety' and Test Result Stress

If you feel nervous during the days leading up to your test, you’re not alone. “At least 70 percent of patients share that they experience anxiety when they're approaching scans and testing, even when they are in remission,” says Figer. In fact, the feeling is so common that it’s often called “scanxiety.”

• Schedule your test early in the day. This shortens the amount of time you spend waiting and worrying before a test.
• Know what to expect. Talk to your care team in advance about what to expect during your testing and ask questions like How should I prepare? What should I eat, drink, or avoid? What should I wear? How long will it take? What will I see, hear, or feel? When and how will I get my results?
• Stay busy before the test. Fill the days before your test with activities you enjoy that can easily be rescheduled if needed, like watching a favorite show, going for a walk, or spending time with family. Staying busy gives your brain something to focus on besides the test.

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• Stick to your routine. Maintaining your normal schedule can help you keep your mind on the present instead of worrying about the worst‑case scenario.

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• Try a relaxation exercise. Slow, deep breathing exercises or meditating can calm your body and quiet racing thoughts. Even a few minutes can make a difference.

Talk Openly With Your Doctor About Your Fears

If anxiety about relapse is affecting your daily life, it’s important to let your care team know. “Your team may be able to answer questions that are on your mind or ease your worry simply by talking to you about your personal cancer and what to expect,” says Chilcote. “They can also connect you with other resources within the cancer center for additional support.”

If you’re unsure how to start this conversation, here are a few questions you can ask during your next appointment:

• "I've noticed a change in my lab numbers, and it's been worrying me. Can you help me understand what it means?"
• "I’m feeling anxious about my next scan. Can we review the different scenarios, so I can prepare myself mentally?"
• "I’ve been worried about a specific symptom. Can you describe which symptoms are normal and which ones should lead me to call your office?

Remember, “Your mental health is as important as your physical health,” says Figer. "Just like you're doing what you need to do to take care of this myeloma, you should feel confident that you are in control of your mental health care, too.”

Find Support

You can find support through the following organizations:

• International Myeloma Foundation (IMF) offers more than 160 local support groups for people living with multiple myeloma.
• Smart Patients is an online community, in partnership with the IMF, for people living with multiple myeloma.
• Blood Cancer United provides peer support, guidance from oncology social workers and nurses, and in‑person or virtual support groups for people living with blood cancers.
• The 4th Angel is a one-on-one peer support program that matches you with a mentor who shares your diagnosis and treatment experience.
• Mayo Clinic Connect is a moderated online community for people living with various cancers and diseases.
• CancerCare offers a 15-week online support group for people living with blood cancer, led by oncology social workers on a secure, private message board.
• Cancer Survivors Network is an online community hosted by the American Cancer Society.
• Hospital‑based programs may offer in‑person or virtual support groups, peer mentoring, or educational sessions.

Another option is a psychotherapy group, which is often available at cancer centers. “These groups are led by a therapist who uses techniques such as cognitive behavioral therapy or acceptance and commitment therapy to help guide the discussion and provide tools for managing stress,” says Chilcote.

The Takeaway

• Multiple myeloma often follows a remission‑relapse cycle, which can often lead to ongoing anxiety about the cancer returning.
• You can reduce your anxiety by focusing on what is within your control, such as attending all follow-up visits, learning which symptoms require a call to your care team, and understanding your future treatment options.
• Scanxiety is a term used to describe how patients often feel before blood work or imaging. You can manage this stress by scheduling tests early in the day, asking your care team what to expect, staying busy beforehand, sticking to your routine, and practicing relaxation tools.
• Discussing your fears with your care team and joining a support group can make it easier to cope with the uncertainty that comes with being in remission.