For Many Breast Cancer Patients, Scanxiety Is More Serious Than You Think

When Ali Heitz arrived at the hospital for her check-up scan, exactly one year post-breast cancer diagnosis, she thought she was prepared. Leading up to this day, she was actually excited: after completing many months of treatment, she felt eager to check this scan off her to-do list, and hopefully get the call confirming she was cancer-free. But when it was finally time for her appointment, Heitz felt overcome with nerves as she entered the MRI machine.

"It's almost like you're transported back to that week you were diagnosed, and you forget you've gone through it all already," she tells PS. "You go through [the feelings] all over again."

What Heitz experienced is a sensation known as "scanxiety," a term that was coined in 2011. Specifically, it refers to the "distress and/or anxiety occurring before, during, and after cancer-related imaging/scans," according to the peer-reviewed journal Cancers. For breast cancer patients, in particular, those scans can include mammograms, ultrasounds, and MRIs, among others — they're required throughout treatment, and then annually for a number of years following remission.

Although there's no exact data to quantify just how many individuals get scanxiety, based on information we gleaned from experts, it seems like a pretty prolific experience. PS chatted with breast cancer patients and medical professionals to get a better sense of what scanxiety really means, and how to manage stress during these crucial checks.

Chloe Carmichael, PhD, is a clinical psychologist, speaker, and the author of "Nervous Energy: Harness the Power of Your Anxiety."

Irene Morae Kang, MD, is the medical director of women's health medical oncology at City of Hope.

Scanxiety can manifest in different ways for different individuals, and may be caused by various underlying reasons. However, it primarily boils down to fear — either of the unknown or the all-too-well known.

For some, it might be the unpleasantness of the scan appointment itself that sparks stress, says Chloe Carmichael, PhD, a clinical psychologist, speaker, and the author of "Nervous Energy: Harness the Power of Your Anxiety."

Certain scans, "are hard to do, even if there's not an emotional component," Irene Morae Kang, MD, medical director of women's health medical oncology at City of Hope, tells PS. Take MRI scans, for instance, where you have to lay still in small, cramped quarters for an hour or more. "This can be difficult for someone with even baseline claustrophobia."

For Sheree Santos, a two-time breast cancer survivor and City of Hope patient, this sentiment certainly rings true. "During the scan, I do get nervous, because the scans are uncomfortable," she tells PS. "I have high blood pressure and what they call, "white coat syndrome," which means I get anxious being around doctors."

In other instances, however, the scans might incite feelings of deep underlying dread about cancer. If you experience anxiety during a preventative check, perhaps you have a family member who went through a cancer journey, and this appointment is bringing up difficult memories, says Dr. Carmichael. For others, the anxiety can be downright debilitating and prevent you from scheduling the necessary check-ups to begin with.

What's more, "since the purpose of these scans is to check if you're okay, in the back of your mind, you know the reason they're checking is because you might not be," says Dr. Kang. "Sometimes that's a fleeting thought, or it can really be pervasive and quite intrusive."

And if you've already been diagnosed and completed treatment, follow-up checks can be quite triggering as well. "I know what I would have to go through again, and I know I could do it again. But I also know exactly what it entails, and it's damn hard," says Heitz. "I don't think people always realize the emotional trauma that comes along with it. It takes time to heal, and everyone processes it differently."

Heitz says this kind of experience can lead you to feel betrayed by your own body. "It can be hard to trust your body will keep the cancer out," she says.

Dr. Kang also notes that, for breast cancer survivors, "the ante is much higher for their risk of recurrence," which means they might get scans more frequently than people with other types of cancer, she says. For instance, survivors with stage four breast cancer, or people living with more advanced breast cancer, will get scans every three months to check if their cancer is still under control on the current treatment. "So it can be very frequent and very scary, either wondering if you're going to experience recurrence, or worse, if your cancer is progressing," she says.

"For a lot of my patients, the scanxiety lessens over time," says Dr. Kang, noting that she's found it's particularly challenging for patients as they transition from active treatment to survivorship. "But I think, in a way, it's always there."

In order to manage those negative feelings, Dr. Carmichael suggests getting honest with yourself about the root of the scanxiety. If it's symbolic of a much deeper, more pervasive concern, it can be helpful to speak with a mental health professional to address.

That said, if it's the unpleasant appointment itself that's sparking scanxiety, there are a number of ways to ease symptoms — before, during, and after a scan.

1. Find positive diversions

To start, it can be useful to seek healthy distractions, says Dr. Carmichael. She recommends coming up with five things that can help redirect your attention leading up to an exam. Perhaps that's watching TV, getting a nice massage, or even bringing a loved one to the appointment. For Santos, those activities include "Pilates and yoga classes, dance, and enjoying a glass of wine and laughter with girlfriends," she says. "After the scan, I try not to dwell on it, by keeping myself busy with working out or going on an outing with my family or a friend."

2. Practice mindfulness

According to Dr. Kang, there is evidence that mindfulness and mind-body techniques can be helpful for patients going through cancer, "so it's logical to think it could be useful for scans, too." She suggests trying meditation before a scan, or making it a regular practice.

Heitz has personally found meditation and breathwork incredibly helpful during her own cancer journey, particularly for processing her experience. "I really try hard and just sit with the emotion and I don't shove it away and compartmentalize it," she says. "If I need to cry, I will cry."

3. Try thought replacement.

"Your inner monologue is really going to shape the way you experience [scans]," says Dr. Carmichael, which is why she recommends trying a technique called "thought replacement" during highly stressful moments. For example, if your annual scan is coming up to confirm you're in remission, and your brain is flooded with negativity, she suggests repeating to yourself: "I'm strong, I'm healthy, this scan is just to confirm that things are as they should be." It's important to give yourself a specific script to focus on, to help quiet maladaptive thoughts.

If you're not in remission, but rather in the midst of treatment, Dr. Carmichael says a helpful thought replacement might be: "I'm in the safest place imaginable. I'm in the right place to get the care I need."

This type of thinking has been useful for Santos. "Because I'm a naturally positive person and have a strong faith, I always tell myself nothing will be found on the scans, and I go into them with as much positivity as possible," she says.

4. Communicate with your doctors.

While there are a number of ways to help ease internal turmoil, it can also be incredibly helpful to vocalize fears or concerns to your medical provider. "I really encourage patients to open up with their doctor, because we're the ones ordering scans for you. We want to know if there's any kind of support or assistance we can give pre-scan," says Dr. Kang.

It's important to communicate these needs, because they look different for everyone. For instance, "some patients are information junkies and want to see their scan results ASAP while others want to wait until a healthcare provider can put it into context," says Dr. Kang. Whether you fall into the first or second category, she encourages patients to ask questions like: "How should I expect results? Can I reach out to you or someone from the team to explain my scan to me? Etc." Simply opening up the conversation can do wonders for easing that fear and anxiety around the unknown and uncertain.

5. Lean on your support system.

In addition to seeking support on your medical team, "it's really important to make sure that you don't go through things alone," says Dr. Carmichael. "Psychology research shows that, in general, social support is good for people. And when we feel afraid or insecure, it helps to have an ally."

Both Heitz and Santos confirm just how crucial it is to find a strong community. "My big thing is asking friends for help, and talking to my family about how I feel, especially when I'm feeling scared," says Heitz. "My mom, in particular, is so positive. She kept me marching the whole way through."

Beyond friends and family, Dr. Kang says counseling can also be incredibly helpful, if that's available.

There's no getting around it: Cancer-related scans can be frightening and stressful, and it's not shameful or embarrassing if you do experience "scanxiety."

There are a number of ways to manage this unpleasant sensation, and many experts hope to see more acknowledgement and accommodations in the future of medicine. "I do think we have to focus on healthy ways to treat and support patients with the very natural anxiety response that happens with scans," says Dr. Kang. "[That could mean] building out mindfulness-based programs or just making the clinical setting a more healing and less scary space. I think we need to support the patient's experience, not just treat a disease."

In the meantime, "scanxiety or no scanxiety, get the scans done!" says Santos, noting that her cancer was detected early at stage one, thanks to routine breast scans. "I've always scheduled my medical screenings as recommended. These tests have saved my life and I'm forever grateful."

As for Heitz, her one-year scan confirmed she was in remission. And the emotional roller-coaster of that scanxiety experience helped her put things back into perspective: "It's just another reminder to not get hung up on the small things," she says. "My job is to keep a smile on my face, and live each day in the moment."

Kristine Thomason is a lifestyle writer and editor based in Southern California. Previously, she was the health and fitness director at Mindbodygreen and the fitness and wellness editor at Women's Health. Kristine's work has also appeared in PS, Travel + Leisure, Men's Health, Health, and Refinery29, among others.