As NBTS addressed in an earlier blog post about scanxiety, scanxiety is common, and most patients with a brain tumor will experience scan-related anxiety. While scanxiety can’t be avoided altogether, there are ways to manage the symptoms.
“For those living with a brain tumor, MRIs often lead to one’s diagnosis and play an integral part in the cancer journey,” said Alexa Greenstein, MSN, RN, FNP-C, a neuro-oncology nurse practitioner at Kaiser Permanente. “Each scan can feel like there’s a lot at stake. So how does one confront scanxiety? How can we make it so that we don’t feel overwhelmed and frightened when we have MRI scans?”
1. Acknowledge and Name Your Scanxiety
In order to cope with scanxiety, the first step is to notice it and acknowledge that it exists.
“Anxiety is a normal emotion and response to uncertainty, fear, and worry,” Alexa said. “Our brains are hardwired to keep us safe and out of harm when we face a threat.”
By naming your scanxiety, you can establish a relationship with that anxiety. Part of this awareness-building process is taking a deeper dive into identifying what is happening, what is the most challenging, or what is causing the most stress in the scan process.
Alexa shared, “I ask individuals I’m working with, ‘When we look at the scan experience, what is it? Is it the scan itself? Is it the anticipation beforehand? Is it waiting for the results? Or is it all the above?’ Working together, we can gather information to better understand one’s scanxiety experience. From there, we can develop some effective interventions and personalized coping strategies. We all have fears and doubts that live within us, so rather than fighting them, let’s learn to confront and embrace them.”
2. Talk to Your Health Care Provider
At its core, scanxiety is a form of anxiety. Side effects from treatment, symptoms from the tumor, and other conditions like depression and generalized anxiety disorder can share some of the symptoms of scanxiety, so it’s important to discuss any new or worrisome mental health concerns with your health care provider.
“Because scanxiety symptoms may resemble those of other conditions, it’s important to work with your health care team who can help uncover what’s going on,” Alexa said.
You can also contact a counselor or therapist for additional assistance. They can be partners and allies for support to help you manage your scanxiety symptoms.
“I recommend to a lot of patients that they find a counselor or psychologist who can help process this diagnosis,” said Dr. Nicholas Blondin, a neuro-oncologist at the Smilow Cancer Hospital at Yale. “You can’t just take a pill and make scanxiety go away. It takes work to address it. With the work, you can feel better.”
Communicate with your health care team about what makes you anxious or worried. For example, if you’re feeling claustrophobic in the MRI, some medications and techniques can work to make sure those experiences are not so unpleasant.
If the nurse or technician is having difficulty inserting and starting your IV, check with your health care team to see if there might be another way of getting access and ask, “How do we make this experience more pleasant?” Your provider may not have answers to all of your questions, but having that conversation and asking for what you need is important.
3. Ask About Medication
Talk to your health care team about your scanxiety symptoms and ask whether anxiety-reducing medication may be helpful for you leading up to or during a scan. Avoid starting any supplements or drugs on your own without speaking to your health care provider to ensure safety and to sidestep adverse drug interactions.
“There are medications that can lessen scanxiety symptoms when used appropriately,” Alexa shared. “These medications can temporarily manage symptoms; however, they are associated with some side effects and risk and are prescribed with caution.”
4. Formulate an Action Plan
You can ease some of the uncertainty around the scan process by understanding timelines and expectations for communication with your health care team. Formulate a plan of action around your scans by considering the following questions:
When will the next scan be?
Do you prefer to receive your results in person or over the phone?
Do you want to receive the results in your patient portal? If so, would you like to review the results on your own before your appointment or after you’ve had the conversation with your care team?
How do you want your care team to share the results with you? Do you want them to cut to the chase and share it in an appointment or phone call with no pleasantries, or do you prefer no call if there is nothing new to report?
Who do you want to be with you when you receive your scan results?
Do you prefer to have appointments earlier in the day to avoid having to wait all day?
Can you schedule a visit with your health care provider right after your scan to reduce your wait time?
Ask what do these results mean for your treatment plan? Should you continue with the current plan, or are there any changes to your care?
Do you want to communicate your results with any family or friends?
What do you want from your family when you receive your scan results?
Reviewing these questions over time is helpful because what works now may not work a year from now. Your situation may evolve if the disease progresses or if it’s now in a surveillance period.
Here is one example of how Ann S., a patient with glioblastoma, takes control of her scan process:
“I like to schedule my scans at seven in the morning. I don’t have to wake up and think about it. I wake up, we go directly to the hospital, and I have the MRI.”
“As soon as the MRI is read, I can read it in my patient portal. I choose not to read it because it’s got a lot of medical jargon, and I figured it would make me nervous.”
“I see my oncologist two to three hours after the scan.”
“My oncologist asked me once when she came in, ‘Do you like just the results, or do you like the small talk if you’re anxious?’ I said, ‘Please walk in the room and say it looks good, or I’m so sorry.’ Then, I know what we’ll talk about, which gives me a chance to think about it. We can then come up with a plan.”
“Finally, I text 10 people before I leave the hospital with my scan results.”
While her action plan won’t change the scan’s outcome, it gives Ann a better sense of control and comfort throughout the process.
5. Look for Opportunities to Gain Control
Take a moment to look at other things in your life that you can regain control over. Consider the little things like choosing the clothes you wear, picking the food you want to eat, or setting your preferred daily routine.
Sometimes gaining some control back in your daily life can help create comfort and normalcy, which can counterbalance some negative emotions that might arise around a scan.
“I think one thing that is so true about brain cancer experiences is that many people feel like they have lost so much, including a loss of control,” Alexa explained. “I’ve heard from so many people that the cancer experience is like riding a roller coaster full of twists, turns, ups, and downs. Having a loss of control coupled with scanxiety can make for a very unpleasant experience.”
6. Set Aside Time to Worry
One way to embrace scanxiety is to set aside time to worry, because it’s OK to be concerned.
“The research has found writing out or talking with someone you trust about worries and fears can promote calmness and happiness,” Alexa explained.
By setting aside time to worry, you may be able to reduce the anxiety you experience all day. You can jot down your worries over the day in a notebook or on your phone and then deliberately use a designated time and space later in the day to worry about these concerns.
“Scheduling time to worry has been a beneficial tool for some individuals,” Alexa said. “Choose an intentional time and place to worry — one or two 10-15 minute sessions, as you don’t want to spend too much time, energy, and headspace worrying.”
7. Communicate with Friends and Family
Tell family and friends about your upcoming scan to have a support network around you. You can ask one person or multiple people to be on standby or even have someone with you at the appointment where you receive your scan results.
“My brothers and sisters across the country have my next scan on their calendar,” said Brett J., who was diagnosed with oligodendroglioma approximately 10 years ago.
It’s helpful to have a strategy of how you want to get through this time together because family, friends, and loved ones might also be anxious and worried. You may feel more tension at home or like things are on edge, so give each other space, grace, and understanding.
Depending on your personal preferences, you and your loved ones may find that you need more time together, more time apart, more communication, or less communication leading up to a scan.
“I think it’s important to communicate your needs because everyone is in this experience,” Alexa said. “The individual and their loved ones will be experiencing some sort of emotional response to the upcoming scan. So ask yourself, ‘How do we get through this together?’”
Next Up: Managing Scanxiety with Self-Care
Many health care providers can help you address and manage scanxiety. If scanxiety is affecting you, talk to your primary care provider, oncologist, or psychologist. Palliative or supportive care is another avenue to help manage scanxiety.