How to Manage Scanxiety and Fear of Lung Cancer Recurrence
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Since her stage 1 lung cancer diagnosis in September 2015, Colette Smith had to undergo computerized tomography (CT) scans of the chest every six months for the next five years. Now, she needs them only once a year, but the screening is still stressful. Whenever her doctor’s office calls to schedule a scan, she starts to worry all over again.
“I have anxiety leading up to the date of the scan,” says Smith, 58, who lives in the Bronx, New York, and works as a dispute resolution manager for an insurance company. “I give myself the pep talk that I have to get the scan done.”
Soon after each scan, a radiologist interprets Smith’s images, and she sees an oncologist who gives her the results on the same day. Once it’s clear that her cancer hasn’t come back, she rewards herself by going shopping.
Smith isn’t alone in feeling anxiety related to undergoing scans that check for possible recurrence of lung cancer. The panic or dread that many survivors of lung cancer experience is often described as scan anxiety, or “scanxiety.”
Scanxiety Is Common in Cancer Survivors
“Scans and scanxiety are a way of life for a lot of people who have been diagnosed with cancer,” says Emily Tonorezos, MD, MPH, director of the Office of Cancer Survivorship at the National Cancer Institute in Rockville, Maryland.
“And lung cancer, especially, is a diagnosis that requires a lot of scans during treatment and for people who are finished with treatment as well.”
Scanxiety can occur at all stages of evaluation, treatment, and surveillance for lung cancer, says Natalie Lui, MD, an assistant professor of cardiothoracic surgery at Stanford Medicine in Palo Alto, California.
It can also affect individuals who undergo low-dose CT scans for lung cancer screening because they are at high risk of developing the disease. This includes current and former smokers, says Dr. Lui.
For those who have completed treatments for lung cancer, the majority of patients still experience scanxiety even a decade later, says Jonathan Villena, MD, an assistant professor of cardiothoracic surgery at Weill Cornell Medical Center in New York City.
That’s because patients typically need a CT scan every six months to a year for the first five years, then every one to two years thereafter, to check for recurrence, says Dr. Villena.
“The chances of [finding] something new are there, but are small, so it’s more for reassurance than anything else,” he adds.
If there is something suspicious, your doctor will likely order a full-body PET scan to see if the cancer has spread beyond the chest.
Even if lung cancer has migrated elsewhere in the body, Villena points out that almost all stages and locations of the disease are now much more treatable than ever before. This means there is almost always a next step or treatment option. “So,” he says, “it is not as dire as it used to be.”
Maintaining a positive outlook will help make scanxiety less disruptive to your daily life. Left unchecked, scanxiety can cause other health problems. And it can interfere with your ability to follow through with a scan, which may detect cancer at a more treatable stage.
Signs and Symptoms of Scanxiety
“[Scanxiety has] a wide range of symptoms, from feeling a little nervous to severe anxiety and extreme feelings of dread,” says Lui. “Some patients have trouble sleeping or eating or find themselves irritable or restless.”
Scanxiety can also cause an increased heart rate, elevated blood pressure, or muscle tension, says Tawee Tanvetyanon, MD, MPH, a medical oncologist at Moffitt Cancer Center in Tampa, Florida.
Rapid breathing is also common in people with scanxiety, but this varies. “Everyone responds to stressful situations differently,” says Christopher P. Gange Jr., MD, an assistant professor of thoracic imaging at Yale School of Medicine in New Haven, Connecticut.
It’s normal to be nervous about undergoing any medical procedure or receiving potentially life-changing results, says Dr. Gange, as long as it doesn’t stop you from pursuing required follow-up imaging or care.
“Once a threat has been defeated, nobody wants to find out that it is back,” he says. “Scan results represent a source of uncertainty. Often, people feel that something is wrong but don’t want those feelings confirmed. It is important that fear of the unknown not prevent necessary surveillance scans.”
Fear of Radiation Exposure
When cancer has recurred, scans are important to track the response to treatment. If the cancer is shrinking, a scan may tell you and your doctor that it’s helpful to continue the same therapy. However, if the cancer has progressed, that could warrant a change in your treatment, says Christina Annunziata, MD, PhD, senior vice president of extramural discovery science at the American Cancer Society.
Some cancer patients worry about radiation exposure from the scans. “The CT scans are done with the least amount of radiation possible,” says Dr. Annunziata, “and these tend to be quite low exposures.”
In the case of recurrent metastatic lung cancer, patients should not fear the small doses of radiation they are exposed to during the scan. “The benefits of identifying the cancer response or progression will outweigh the risks,” she says.
Your doctor can discuss any concerns you may have about radiation exposure.
“Doctors try to use the imaging approach with the least radiation exposure,” says Lui.
Claustrophobia, or Fear of Confined Spaces
At all stages of lung cancer, scans may also cause fear of enclosed spaces, or claustrophobia.
CT scans of the chest usually take less than five minutes, and the scanner has a wide opening, which may make the procedure less scary, says Villena. On the other hand, he notes, MRI scans — which are often done to check for or monitor brain metastasis — take about 45 minutes and are done in an enclosed tube.
Your doctor may be able to give you a sedative or anti-anxiety medication to help with claustrophobia.
Juanita Levell, 86, a retired educator who lives in Brooklyn, New York, takes anti-anxiety medication eight hours before a CT scan of the chest every six months to check for recurrence of her stage 1 lung cancer, diagnosed in November 2019. She feels anxious about being placed in a narrow tube.
“When I’m told to get in position, I close my eyes,” says Levell. She doesn’t open them until the test is completed.
Finding Support and Reassurance for Scanxiety
Different methods of coping with scanxiety will work for different people. Some patients feel less anxious about their scans by connecting with others in similar situations through support groups or by opting for personalized therapy. Mindfulness or meditation can also make a difference, says Gange.
“If the scanxiety is related to the procedure itself,” he says, “having a trusted friend or loved one go to the appointment with you helps.”
It’s also important to realize that not everything seen on the scan requires action.
“Scans can [reassure you] that the treatment is going in the right direction,” says Dr. Tanvetyanon. “It is always better to be in the know. Therefore, scans can only bring good things to you. When you know what the cancer is doing, you can control it before it becomes too late.”
Just remember: “It is okay to be fearful. Anyone in your shoes would likely feel the same,” says Tanvetyanon. “However, you have a doctor who can help you deal with the scan results, and you will be okay because you have done your best in this cancer journey.”
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