Cancer Screening & Early Detection
False Positives and the Devastating Psychological Impact on Cancer Screening Trial Participants
The goal of cancer screening trials is to find the best ways to detect cancer early, when it may be easier to treat and thereby be able to produce an intervention in time that can extend your life and reduce your suffering.
That this purpose is noble is without controversy, except that some cancer screening trials produce results that are “false positives.” A false positive test result gives you the diagnosis of having cancer or reports abnormal findings when you do not have the disease.
No screening tests for cancer are perfect, and there is a certainty that some of the test results will be false positives. A good screening test keeps the false positives to a minimum, but it is not possible to entirely eliminate them.
The problem is that a false diagnosis is psychologically devastating, as most people assume the worst and consider a diagnosis of cancer as a death sentence.
If your cancer screening test comes back positive (even if it is wrong), you will experience devastating psychological and emotional impacts. These effects usually continue even after follow-up tests declare you “cancer-free.”
This article explores what causes false positives in cancer screening trials, why they are so common, and how they affect your mental health if you volunteer for these trials.
How do false positives come up in screening trials?
Cancer screening trials work with healthy volunteers because the point of these studies is to discover cancer before any symptoms appear. The screening tests are sensitive and designed to be exceptional at identifying if you have cancer, but, at the same time, are not very good at determining if you don’t have it.
The sensitivity helps detect your cancer early. The dial is turned way up to detect as many cases as possible because missing a cancer detection may be life-threatening.
If the screening trial is for breast cancer, colorectal cancer, cancer in your lungs, or prostate cancer, the proportion of false positives is very high in the initial screening. Whether you have cancer or not must be confirmed with additional tests.
False positives are statistically expected; however, your reaction can be overwhelming.
What is the impact if you receive a positive result?
If you receive a positive screening result, your mind will race with the worst imagined outcomes, including fearing death, being terrified of the treatments, financial anxiety, and a general sensation of extreme dread.
Research shows that if you receive a false positive report, you will likely experience severe anxiety and stress. Your sleep may be disrupted. You may have difficulty concentrating and start worrying about all things in your life that are health-related. You may have trouble dealing with friends and family or suffer setbacks at work.
These are normal emotional responses because cancer, aka the “Big C” has intense cultural and personal meaning. Screening trials recruit healthy people to participate, and, therefore, you will not be expecting bad news.
Potential of Short-Term Psychological Harm
Right after you get a false positive report, you are very likely to have an intense emotional reaction, which is similar to a patient who has the disease and a confirmed diagnosis.
You will typically experience huge amounts of anxiety and the maximum level of stress while you are forced to wait for days or weeks for follow-up tests. You may be overwhelmed with catastrophic “doom and gloom” thinking. There will certainly be a disruption to your normal routine. You may experience deep depression.
Your work performance, relations with family members, and friends may suffer as you mentally “prepare for cancer.” You may change your self-image to one of a victim and see yourself as a patient, who is no longer a healthy person.
Later, when you get a follow-up test that says you do not have cancer, you may not be able to believe it, and this may lead to long-term problems.
Long-Term and Lingering Psychological Harm
Even if your cancer is subsequently ruled out, you may continue to experience lingering negative effects.
Long-term psychological harm may include ongoing cancer-related anxiety, reduced quality of living, excessive healthcare system utilization, and increased awareness of bodily symptoms that may lead to hypochondria (imagined diseases).
In some studies, those who experienced false positives reported anxiety continuing for months and even years, equal to people diagnosed with early-stage cancer.
This phenomenon has been given a name. It is called the “psychological scar” of screening and raises important questions about how trials are conducted to do the least harm.
Are you more vulnerable?
You may experience a greater psychological impact of a false positive if you have had a prior trauma, illness, or mental health issue. This may be more difficult if you have family members with cancer. You may be more frightened if you are older. You may be more nervous if you come from an underserved community and don’t understand health issues.
How do researchers measure psychological harm?
In the past, cancer screening trials focused on cancer occurrence and deaths. Psychological outcomes were often ignored. However, this is improving with modern trials that also measure anxiety and stress. They collect participant responses to quality-of-life assessments and may have long-term mental health tracking as part of the study.
How to Reduce Psychological Harm
False positives cannot be eliminated, but the harmful impacts can be reduced by the following:
- Improving test targeting
- Risk-based screening methodologies
- AI-assisted diagnosis
- Shorter times for follow-up tests
- Mental health support
As screening technology advances, so too must our compassion for the human experience behind the data. If you plan to volunteer for a cancer screening trial, it is best to prepare yourself for the possibility of a false positive.
