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

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.

“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.”