Diane Mapes is a former freelance journalist who writes about public health, cancer prevention, and scientific research for Fred Hutchinson Cancer Center in Seattle, Washington. Diagnosed with breast cancer in 2011, she went from covering dating and singles issues to “science whispering” and cancer patient advocacy. Diane is the author of hundreds of essays and articles for NBC News, CNN, MSN, Seattle P-I, and Seattle Times, and she also writes fiction and music. You can follow Diane on Twitter.
You know that saying, “The waiting is the hardest part”? Well, when it comes to the results of cancer biopsies or scans, that saying is spot on: the wait is a bear. In fact, there’s even a name for the fluttery-stomached feeling that starts when you realize you have a scan coming up and often stays until you get the results from your doctor: “scanxiety.”
Most people with cancer have been scanxious at one time or another. It’s because we all remember that one test result that didn’t come back as nothing; it came back as cancer.
Having gone through that experience at least once, people in treatment for earlier-stage disease, those with metastatic disease, and cancer survivors know only too well that a single computed tomography (CT) scan or magnetic resonance imaging (MRI) scan can change your life in a heartbeat. People with cancer and survivors may receive testing for many reasons, including to guide next steps in their treatment plan or monitor for a recurrence. A person fresh out of chemotherapy might discover through testing that their therapy didn’t work and that they have to try something else. Meanwhile, a person who already has metastatic disease may discover a new targeted therapy worked brilliantly, and they’re now “NED” (no evidence of disease).
Mainly, people with cancer and survivors just want to know what the result is—and we want to know it as soon as possible.
As part of the recent enactment of the U.S. federal law known as the 21st Century Cures Act, which mandates the immediate electronic release of all test results, medication lists, and clinical notes to patients, that’s finally happening. Thanks to modern technology, the results of a biopsy, blood draw, or CT scan may now be waiting in your patient portal by the time you get home from the cancer center.
There’s only one problem: seeing results from tests or scans without the context of what those results mean may be even worse than the wait.
People can now electronically access their detailed test results without the help of their doctor’s lay-friendly interpretation. Doctors, in fact, may not be able to follow up with their patients until days after the patient has received the results. And the problem with that is, if you’re new to cancer or haven’t yet mastered the confusing lingo that can come with a cancer diagnosis, opening your patient portal may feel akin to opening Pandora’s box.
An October 2021 research letter in JAMA Network Open sums the dilemma up thusly: “The benefit associated with immediate release of test results may be overshadowed by unintended consequences to patient well-being.” Or, as a young patient with triple-negative breast cancer recently put it on Twitter: “I found out I had cancer through MyChart at 7:33pm and didn’t get a call for 36 hrs.”
Test results are rarely easy for patients to interpret on their own; pathology or radiology reports can be full of confusing words, medical jargon, and even phrases that vaguely resemble insults like, “Patient’s uterus is unremarkable.” And the new rules don’t do much to break down jargon; it just gets you access to that jargon faster. The downside of that is without a doctor or other care team member there to help interpret results, answer questions, and defuse fears, people with cancer may suffer emotional or even physical consequences.
“Often there’s wording and nuances about the results that can lead to either misinterpretation and extreme anxiety or an underappreciation of the significance. If a doctor is too busy to review the results promptly and contact the patient, they need to delegate that responsibility. Someone needs to communicate with the patient fairly quickly. The interpretation of results is key.” – Gary Lyman, MD, MPH, medical oncologist, hematologist, and public health researcher at the Fred Hutchinson Cancer Center in Seattle, Washington
Does this mean patients should hold off on peeking at results until their oncologist has had a chance to review them and reach out? Not necessarily. And it’s not realistic, either. Ideally, someone on your health care team should be available to discuss the results with you when they are shared, either simultaneously or within a day. However, this won’t always happen. Doctors take vacations. Emails may go unread for a few days. And there are ongoing health care personnel shortages thanks to more than 2 years of an unrelenting pandemic. Sometimes, results will be released before a doctor even reads them.
If you’ve received results in your patient portal and haven’t yet heard from your doctor, reach out to your health care team to see when you can anticipate discussing the results. If you are feeling scanxiety as you wait for your results and the discussion with your doctor, keep these tips in mind:
Remember, feeling scanxious is both common and normal.
Knowledge is power. Learn about your cancer and look up unfamiliar cancer terms via trusted websites like the National Cancer Institute’s (NCI) Cancer.gov, the American Society of Clinical Oncology’s (ASCO) Cancer.Net, or the American Cancer Society’s (ACS) Cancer.org. Or, call the NCI’s Cancer Information Service at 1-800-4-CANCER.
Ask your health care team before the test or scan when and how the results will be delivered.
Distract yourself with books, movies, animal videos, outings with friends, or whatever else might help calm your worry.
Breathe. Try slow, controlled breathing to calm your mind and soothe the “what ifs?”
If no one’s available to discuss your results with you right away, reach out to trusted patient advocates for support. The National Comprehensive Cancer Network (NCCN) website and Cancer.Net list dozens of advocacy and support groups, and you can reach out to knowledgeable advocates via cancer community sites like Colontown.org, BreastCancer.org, or BCSM.org.
If you’d rather not know the results first, tell your doctor your preference.
The author has no relevant relationships to disclose.