Conditions: Anxiety Between Cancer Diagnosis and Treatment Plan

The time between learning that cancer is present, or strongly suspected, and learning its stage and the treatment plan is, for many people, the most stressful stretch of the entire cancer experience. This page describes what this anxiety is, why the wait is so hard, how common it is, and when it may be more than the expected stress of a hard situation.

What happens during this waiting period

After a biopsy shows cancer, or after an exam or scan makes cancer likely, several steps usually come before a treatment plan can be offered:

• Biopsy and pathology. A sample of tissue is taken, for example by needle biopsy or incisional biopsy, or during an operating-room examination such as panendoscopy. The pathologist's final report often takes about a week, and sometimes longer when special stains or tests are needed (see understanding pathology results).

• Scans and staging. Imaging such as a CT scan, MRI or PET-CT scan measures the tumor and checks whether it has spread. Staging combines these findings into an overall stage, which strongly shapes the treatment options.

• Other baseline visits. Depending on the cancer, these may include dental, nutrition, speech and swallowing, and hearing evaluations.

• The tumor board. Specialists from several fields review the case together and agree on a recommendation, which is then discussed with the person.

For head and neck cancers, this stretch commonly takes about 2 to 4 weeks before the plan is discussed, and about 3 to 6 weeks from diagnosis to the first treatment. The treatment timeline pages for throat (oropharyngeal) cancer, early mouth cancer, advanced mouth cancer, early voice box cancer and advanced voice box cancer lay these steps out week by week.

Names for this experience

No single medical term covers exactly this period, but several overlapping ideas describe it:

• Acute liminality. "Liminal" means being on a threshold. Researchers borrowed the idea from anthropology to describe the sense of being "betwixt and between" one's old life and an undefined future, with the diagnosis as the main trigger. Feelings of disorientation and loss of control are typical.

• Uncertainty in illness. This is the leading explanation for why the period is so distressing. Uncertainty is greatest when a situation is unfamiliar and information is incomplete, which describes the early weeks after a diagnosis very well.

• Scanxiety. A term coined by a patient writer for the anxiety that builds before an imaging test and lasts until the results are shared. It has mostly been studied in people having follow-up scans after treatment, but it applies to staging scans as well.

• Diagnostic-phase or pre-treatment distress. Plain clinical terms used by cancer guidelines. The National Comprehensive Cancer Network (NCCN) lists "undergoing diagnostic workup," "learning the initial diagnosis," and "awaiting treatment" as times of increased vulnerability.

• "Diagnostic limbo." Informal language that patients often use. Some describe the wait as a "black hole."

Why the wait is so hard

• Many unknowns at once. Whether the cancer has spread, what treatment will involve, how it will affect work, family, appearance, speaking or eating, and what the outlook is may all be unanswered at the same moment.

• Little sense of control. Results, scan dates and the tumor board schedule are set by others, and there may be little to do but wait.

• Gaps feel like delays. Research suggests that distress follows perceived delay more closely than the actual number of days or the stage of the cancer. When no one has explained why there is a gap between tests, the gap itself can feel like a delay.

• Worry about the future. In a large Swedish registry study, a longer time between diagnosis and surgery was linked mainly to more worry about future health, rather than to more general anxiety or low mood.

How common it is

Distress across the whole cancer course appears to peak in this window, around the diagnosis and before treatment starts:

• In a study of more than 5,600 people with newly diagnosed cancer, more than 40% had severe distress at diagnosis. About 70% reported some anxiety, and about 30% had moderate-to-severe anxiety. Distress then declined steadily over the following 18 months.

• During the diagnostic workup, studies have found possible clinical anxiety in about 33% to 60% of people, and high distress in about 40% of people having staging tests for suspected lung or bowel cancer.

• Large population studies show clearly higher rates of anxiety, depression and stress reactions in the months around a cancer diagnosis, across most cancer types and whatever the stage. In one national claims study, new anxiety diagnoses peaked in the month the cancer was diagnosed.

• The anxiety is not driven only by the final answer. Nearly one-third of people evaluated for symptoms that raised concern for cancer had clinical-level anxiety at the start, whether or not cancer was eventually found.

• Distress is often highest just before treatment begins and tends to fall once a plan is in place and treatment has started.

Most of this research comes from breast, lung and bowel cancer. People with head and neck cancer face similar or greater pressures, because the disease and its treatment can affect speaking, swallowing and appearance, and between about 1 in 4 and more than half of people with head and neck cancer have significant distress at some point.

What it can feel like

Anxiety during the wait can show up in the mind, the body and daily life. Common experiences include:

• Racing or repeated thoughts, often jumping to the worst possible outcome

• Trouble falling or staying asleep

• Trouble concentrating at work or following conversations

• Irritability, tearfulness, or feeling numb or detached

• Physical tension, a pounding heart, an upset stomach, or loss of appetite

• Frequent checking of the phone, patient portal or internet for news or answers

Anxiety also makes it harder to take in and remember information. In one study of people newly diagnosed with bowel cancer, about a third had clinical-level anxiety, and higher anxiety was linked with remembering less of what was said at the visit. This is one reason written summaries, notes, and bringing a family member or friend to appointments are so commonly used during this stage.

Who may be affected most

Anyone can feel intense anxiety during this period, but research points to some groups with a higher chance of strong or lasting distress:

• People who find uncertainty especially hard to tolerate. In one staging study, this trait roughly doubled the odds of high distress.

• People with limited social support, or fewer practical resources such as transportation, time off work, or health literacy

• People with a past history of anxiety, depression or other mental health conditions

How the wait and the anxiety change over time

Faster diagnostic pathways, such as "one-stop" clinics that combine tests on the same day, sharply reduce anxiety in people whose results turn out to be benign. For people whose results do show cancer, anxiety in most studies stays about the same whatever the speed of the workup, although one lung cancer study found that distress eased sooner with a faster program. Some researchers point out that a short period between suspicion and confirmation may give people time to prepare for the news. For most people, distress begins to settle once the stage and plan are known.

Expected distress, or something more?

Cancer guidelines describe distress in this window as expected: a normal reaction to a frightening and uncertain situation, rather than a sign of weakness or a mental illness. For that reason, both the NCCN and the American Society of Clinical Oncology (ASCO) treat the time between diagnosis and the start of treatment as a key time to check in on emotional well-being. Common screening tools include:

• The Distress Thermometer. A 0-to-10 scale on which a person rates distress over the past week. A score of 4 or higher usually prompts a closer look at what is causing it.

• The GAD-7. A seven-question questionnaire about anxiety symptoms over the past two weeks.

Anxiety may be more than the expected stress of the situation when it:

• Makes it hard to sleep, eat, work or care for family for days at a time

• Comes with panic attacks

• Makes it hard to attend appointments or take in information about the diagnosis

• Continues at a high level after the treatment plan is known

• Comes with feelings of hopelessness or thoughts of self-harm

Thoughts of self-harm are an emergency. In the United States, the 988 Suicide & Crisis Lifeline can be reached at any hour by calling or texting 988.

Support during the wait

Approaches studied to ease this anxiety include a clear written list of upcoming tests and when the plan will be discussed, a named contact person such as a nurse navigator, open discussion of what is and is not yet known, early distress screening, and brief mindfulness or cognitive behavioral coping techniques. Support organizations and printed guides for people with cancer and their families are gathered on the cancer information resources page.