Waiting for Medical Test Results: Dealing With the Anxiety, Uncertainty

Family caregivers can help loved ones manage expectations and be assertive, when necessary

Sharon Jayson,

AARP

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En español

Published August 24, 2023

ethan frank collins sits in the passenger seat of the car while his wife drives to his medical testing appointment

Ethan Frank-Collins at a gas station while his wife drives from Columbus, Ohio, to Cleveland. Ethan was diagnosed with acute lymphoblastic leukemia and has appointments at The Cleveland Clinic throughout the week.

Andrew Spear

Joy Frank-Collins was at a conference for work in Lyon, France, when her husband, Ethan, mentioned he was feeling tired. A human resources executive by day and a second-year law student at night, her healthy husband had never broken a bone, had surgery or spent a night in the hospital — until weeks later when lab work ordered by his primary care doctor revealed a serious condition.

“He was tracking the blood test results in real time, and none of them were normal. We basically were Googling and not liking what we were seeing,” she says.

Ethan Frank-Collins, 48, is on medical leave from his job in Columbus, Ohio, at a health care organization. Joy, also 48, is a marketing communication specialist for a nonprofit research firm and works remotely full-time while her husband is treated for acute lymphoblastic leukemia diagnosed in November.

“Those first few days, I felt like I had a nest of bees in my chest from that Monday when he did the lab work until we got his diagnosis,” Joy says. “You’re in such a state of unknowing.”

“MyChart (a secure electronic patient portal) is both a blessing and a curse,” she says. “You’re most of the time seeing your results before your doctors are telling them to you, and you don’t have the level of expertise of the doctor to read between the lines. But the longer I’m doing this, I understand more.”

ethan and joy frank collins getting into the car at their home to drive to a medical appointment

In the early morning of Aug. 9, Ethan and Joy Frank-Collins leave their home in Columbus, Ohio, to drive to Cleveland.

Andrew Spear

The fear factor

As the couple quickly learned, one of the most stressful parts of any major illness is waiting for test results. How to manage expectations and help a loved one deal with the anxiety-producing waiting game is particularly difficult for those unaccustomed to anything other than the routine test. And there’s no “normal” wait time for a test result because the length of time it takes to get a result is test-specific, including whether it involves tissue samples, imaging, blood work or a culture that needs time to grow. Being patient isn’t easy when those results can mean a life-altering diagnosis or a major shift in health status. “It’s such a huge change in someone’s life overnight,” says Christina Irving, director of client services at the San Francisco-based Family Caregiver Alliance, a national nonprofit.

“Emotionally, there’s a lot for the caregiver and the patient to come to terms with,” she says. “Part of the challenge is the uncertainty of what’s to come — and even understanding what it means for the moment.

“It’s quite common that people don’t feel like they have a good handle on what this means,” says Irving, a licensed clinical social worker. “People might have more access to their medical records, but that does not mean they know what that means.”

Accessing results via a patient portal

A 2022 study, published in the journal Health and Technology, asked individuals about receiving test results via electronic patient portals and found an online preference only for routine test results, such as cholesterol or strep.

Of the 8,030 respondents, 54 percent were ages 55 to 74. The preference for portals depended on the test, as “patients are more likely to feel informed when receiving less serious test results, but more anxious when receiving results from more consequential tests,” the study says.

The study found that even considering a three-week wait for results, patients preferred hearing serious test results — such as cancer, Alzheimer’s or a potential miscarriage — directly from the doctor.

When to contact the doctor

Shani Scott, an internist at Montefiore Medical Center in New York City, says her first concern is to alleviate anxiety, fear and stress in patients and their loved ones because those conditions impact physical and psychological health.

She says doctors view all tests as important and ensure accurate results “to make sure nothing in that chain breaks down.”

Delays don’t necessarily mean bad news, she says.

“It could be processing errors or shortages in lab staffing,” Scott says. “It doesn’t mean doom and gloom.”

But Scott says patients and caregivers shouldn’t hesitate to contact the office of the physician who ordered the tests if the expected time for results has passed.

“If they say three days and it’s four or five days, contact them,” Scott says. Even if you get electronic results, you can choose to wait to view them with an expert. She says, “The conversation should be with your provider who is familiar with the extensive medical history to provide the right context.”

‘You don’t know what you need’

Patients who have completed a HIPAA (Health Insurance Portability and Accountability Act) form at their physician’s office allow medical history to be discussed with those designated on that form, says Hilary Katz, case management director at Shalom Austin Jewish Family Service, a nonprofit that provides mental health and support services to both the Jewish community and the wider community in Austin, Texas.

“When you haven’t experienced this kind of trauma, you don’t know what you need,” she says, noting that JFS has a resource list of trusted professionals who can help patients and families with everything from doctor recommendations to counseling. “If we don’t have the answers, we reach out to someone who does have the answers.” An added benefit at her agency is a nurse patient advocate under contract as a result of a donor-funded project, she says. Low-income clients can receive JFS assistance to pay for the service, but those who can pay work out those logistics directly with the advocate.

“We’re able to connect the nurse advocate to be with them when they get test results. The advocate goes to the doctor’s office and takes notes and asks the questions the person would not know to ask,” Katz says. Although this is a bonus specific to patients at JFS, other hospitals and cancer centers have patient representatives and social workers that can step in when required.

Irving, of the Family Caregiver Alliance, says there’s often a need for more clarity about test results.

“Sometimes, people will have great communication with the doctor and what those tests mean and what that’s going to look like and how the condition progresses,” she says. “Other times, people are left with a lot of questions that they may not even know what to ask.”

She says people need to realize that being assertive “isn’t the same as being aggressive.”

“You’re asking for that information and being clear about what you need. It’s hard for the patient, who is coming to terms with what’s going on,” Irving says. “Bring in other family members or friends or social workers or other providers, so you don’t have to do it on your own. It’s building your team, and it doesn’t have to just be the caregiver.”

Speak your voice

Keri Hutson, 52, agrees. Her husband, Timothy, 67, was a construction manager for a cell tower company until his Nov. 2 motorcycle accident not far from their home in Beverly Hills, Florida, about 30 miles southwest of Ocala.

Coping Strategies

Tips from the experts:

Don’t leave confused. Uncertain about next steps? Stumped by medical jargon? Social workers can often “coach families on questions they need to ask,” Christina Irving says. “Be clear about what you need.”

Build a support network. Bring in other family members, friends or social workers for support or backup during appointments.

Find a balance. “If a loved one requires more treatment visits, [family caregivers should] think about how it may impact other commitments” to employers or fellow employees, Shani Scott says. You may be able to take some time to concentrate on caregiving. Understand your rights under the Family and Medical Leave Act.

“You’ve got to speak your voice,” Hutson says. “I was always in contact with a case manager or the supervisor on the floor. I even spoke to the CEO. You’ve got to be an advocate.”

She worked remotely in customer service but had to quit to care for her husband because he had a traumatic brain injury, is bedridden, suffered a stroke and other major injuries and was hospitalized until June 16 when he came home.

“Listen to what the doctors are telling you. Take notes. You have to learn all of it,” Hutson says. “That helps with the anxiety.”

Joy Frank-Collins also takes notes. She’s read books and researched her husband’s condition, especially since chemotherapy and immunotherapy both worked for a while and then didn’t.

“He doesn’t want to know everything and does not want that burden. I have that information for him,” she says.

The next step is a bone marrow transplant within the coming weeks.

“My anxiety about tests lessened, and his heightened. It’s getting so crucial at this point. I hung on every blood count and every lumbar puncture early on,” she says, explaining that since his diagnosis, she’s been keeping track of all his vital signs in her notebook.

“Every time they take his vitals, I put in the oxygen level, temperature, blood pressure and things they’re looking at in his white cell blood count and hemoglobin counts,” she says. “Now I’m doing more of what doctors do — looking for trends.”

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Sharon Jayson is a contributing writer who covers aging, family, health care and retirement. She previously worked for USA Today and the Austin American-Statesman, and she also has written for Kaiser Health News, Time magazine and The Washington Post.