If you have metastatic breast cancer (MBC), you’ve likely experienced scan anxiety, often referred to as scanxiety. This is the anxiety you may feel before, during or after routine scans to determine how your cancer is responding to treatment. Scans may include imaging such as x-rays, bone scans, CT scans (computer tomography), PET scans and/or MRI (magnetic resonance imaging). Other tests may include blood work or physical exams. It’s completely normal to feel anxious before, during or after these tests.
As someone living with MBC, you could have scans and other tests as often as every 3-6 months. This is also called restaging. You may also need them sooner, especially if there’s a concern that your cancer is not responding to treatment. The frequency of these tests can make it seem like you’re living in a constant cloud of scanxiety.
Scanxiety can look different for everyone. Julie and Pam, both living with MBC, describe their own experiences.
Fear of Cancer Progression
When treatment no longer controls your cancer, it grows and/or spreads, which is known as cancer or tumor progression. Regular scans and tests are needed to determine if cancer progression has occurred so other options can be explored.
Some individuals living with MBC have already had cancer progression that was identified by a scan. So, they have the lived experience of knowing cancer progression is possible. Others that have not yet had cancer progression still live with the fear that they may have it on the next scan.
Additionally, experience doesn’t erase scanxiety. You may still have scanxiety even if you’ve had more scans and tests than you can count. Furthermore, the longer you live with MBC, the chance of cancer progression grows. So, scanxiety can seem exponential – increasing with each additional scan or test.
Scanxiety is also not short-lived. You may experience it leading up to the scan, during the appointment and while you wait for the results. With advancements in online medical records, many individuals receive their test results digitally before they speak to their doctor. You may find yourself carefully analyzing the medical jargon of the results report, looking for any key words that may indicate if you do or do not have cancer progression. Ultimately, it’s a waiting game until you can speak with your doctor. It’s also possible to get inconclusive results. In this case, your doctor may recommend additional tests to find an answer. All-in-all, you could experience scanxiety for an extended period every time you have any scans.
Is There Any Good News About Scanxiety?
The answer is ‘yes’ because, in the end, you will know what’s going on with your cancer. That’s the good news and the whole point of these tests – to determine if your current treatment is working. If the cancer is under control with your current treatment, then you can breathe a sigh of relief knowing the treatment is still effective. But, if you experience cancer progression, you now have an answer and can focus on working with your doctor to discuss other treatment options.
What Can I Do to Better Manage Scanxiety?
Scanxiety is a challenge for those living with MBC but there are some ways to cope with it:
- Be gracious with yourself. Remember that scanxiety is completely understandable and normal.
- Don’t be afraid to voice your thoughts and feelings. You don’t need to ‘stay strong’ or ‘power through’ by keeping it all bottled up. It’s ok to express your fears and hopes to others.
- Focus on today (the present) and on what you can control.
- Ask close friends or family members to be a support system for you. Take someone you trust to your appointment(s). Scanxiety is a lot to carry on your own, so let others help carry the burden with you.
- Explore some healthy ways to cope with stress, such as exercise, therapy and/or meditation.
- Prepare for the appointment by having a list of questions. One simple question to ask first is: “What are the next steps (following the scan/test results) and how will it impact me?”
- Advocate for yourself. This includes trying to plan your appointments so that you meet with your oncologist as close to the scan as possible for interpretation of the results. Keep in mind that same-day results may not always be possible. The goal is to limit the waiting time between the scan and meeting with your doctor to discuss the results.
- Review the results of prior scans or tests before you get the new results.
- Decide ahead of time if you will read the full results before meeting with your doctor. Reading ahead will help you form the best questions and could increase your understanding of what it really means. However, some patients may prefer to wait and speak with the doctor to review results to limit their stress and anxiety. Ultimately it is up to you and you should feel empowered to do what works best for you.
- If you think of additional questions later, don’t hesitate to follow up with your medical team.
- If your medical team is dismissive of your concerns/questions, seek other services to get the support and answers you need. If you’re not happy with your care or connecting with your doctor, get a second opinion. It’s OK to get a second opinion at any point. Your doctor should never discourage you from getting a second opinion.
Whether you need emotional support or access to information and resources, the Komen Patient Care Center can help. Please contact the Komen Breast Care Helpline at 1-877 GO KOMEN (1-877-465- 6636) or email helpline@komen.org if you need support. Se habla espanol.
