The unopened envelope sits on the kitchen counter and grows heavier each day that it’s ignored. Whether it’s test results, imaging reports, or a letter from a doctor, many patients find it’s much easier to avoid opening the envelope than face the fear of what might be inside. This fear of finding out, also known as FOFO, is a growing concern in the medical community, as doctors are noticing a significant overall decline in the number of cancer screenings.
To illustrate this trend, a 2025 study found that nearly 1 of 3 people avoided or were likely to avoid medical information, with around 29% avoiding information about cancer and even higher numbers for information about incurable diseases.1 Another recent survey found that only 51% of adults aged 21 years and older had received a routine medical exam or cancer screening over the past year.2
FOFO can manifest itself in many ways. Sometimes, it’s caused by the worry that learning the truth about an exam or screening result will be too scary or life-changing. Other times, it’s tied to more practical concerns, like whether there’s enough money to cover the cost of treatment. But not seeing the full picture can have serious consequences, especially for those newly diagnosed or living with breast cancer.
“If something’s wrong, I’m not ready to know about it yet. If nothing is wrong, it can wait....”
In this article, we will explore what causes FOFO and how a lack of clear, accurate information can intensify the FOFO faced by many people living with breast cancer. We will also explore some trusted educational resources offered by Susan G. Komen that can help break the FOFO cycle and empower people to make the best possible decisions about their care.
What Causes FOFO In The First Place?
We probably all know someone who is dealing with a serious medical condition or has dealt with one in the past. It’s completely normal to feel anxious about your own health in such a situation, especially when it affects a relative or close family member. The fear of having a similar diagnosis can cause some people to avoid finding out.
Any noticeable changes in the body, real or imagined, can also be a source of anxiety for many people. According to authors Gordon J. Asmundson, PhD, and Steven Taylor, PhD, “health anxiety disorder” is a real condition in which a person worries excessively about unusual symptoms or sensations in their body. In their book, It’s Not All in Your Head, the authors explain how constantly worrying about symptoms, even when medical results are favorable, can manifest physical symptoms like tension or nausea that can be seen as illness.3
FOFO can also be caused by fear or mistrust of the medical system, which is a significant barrier for members of the Black community.4 It can come from stress about practical issues, such as fear of losing a job or struggling to fulfill their role as primary family caregiver. Some may also struggle with uncertainty about having access to critical resources like transportation or financial help. Those who receive a breast cancer diagnosis may also fear what might come after the diagnosis, such as new treatments or side effects.
“Getting a breast cancer diagnosis can be very overwhelming, and it’s normal to retreat and not want to think about it or deal with it,” explains Erica Kuhn, Director of Health Information & Publications at Susan G. Komen.
Empower yourself to make informed breast health decisions with Komen’s breast cancer resources. »
How a Lack of Clear Information Creates FOFO
For those living with breast cancer, especially those with a new diagnosis, a visit to the doctor often includes a lot of confusing, overly technical information that may bring about feelings of uncertainty about next steps. This lack of clear, understandable information can create FOFO, causing many people to step back to gather their thoughts before they’re ready to seek more information.
When patients don’t understand what their diagnosis or test results really mean, their minds can create worst-case scenarios in place of facts. This causes a vicious cycle, in which the emotional impact of a diagnosis leads to a delay in seeking care, which feeds into a need for more information.
Eventually, this delay in care causes the condition to worsen for patients, and the very outcome they feared becomes more likely and more serious.
How Misinformation Fuels FOFO
With a new test result or diagnosis, people will often jump to social media or search engines like Google or WebMD for guidance on next steps. While it’s easy to joke about “Dr. Google,” these online searches can increase fear and anxiety.
Social media is one of the most common sources of information, but misinformation can make it hard for someone to know who or what to trust, leading to delays in care.
Social media is one of the most common sources of information, but misinformation can make it hard for someone to know who or what to trust, leading to delays in care.
“There’s so much misinformation on social media, even by people who mean well, through AI and even some websites,” Kuhn explains.
According to a recent survey, more than half of respondents said that they tried a new health tool or approach in the past year that they had found through social media. Even more alarming, only 34% of respondents claimed their healthcare provider as their preferred source of health information. Another 32% said they preferred to get their health information from a friend, family member, or colleague.5
Because breast cancer is not one single disease, but a complex group of diseases, it requires a highly individualized treatment plan that varies from person to person, and not a one-size-fits-all solution. “Each person’s experience is as unique as they are, and no two situations are exactly the same,” Kuhn says.
Misinformation can also delay access to evidence-based screening, leading to later diagnoses and potentially more advanced tumors at the time of detection. Over time, this can cause the disease to spread further, making it increasingly difficult to treat.
Access free educational material to help you through your diagnosis and treatment. »
Empowered By Trusted Breast Health Information
While a breast cancer diagnosis or new treatment can be scary, early detection and effective treatment can lead to positive outcomes. Access to trusted, expert-reviewed breast health information can help improve survival while also easing uncertainty and FOFO.
When patients understand their diagnosis, treatment options, and next steps, they are more likely to stick to their care plan and make informed decisions with their doctors. More importantly, this information can provide a sense of confidence and reassurance, even in the most challenging situation.
“Getting breast cancer is a very scary situation, but having accurate information can help empower you to take control of that situation and make important informed decisions about your health,” Kuhn says. “You become an active participant in your health and care, and you give yourself a voice.”
The Susan G. Komen organization offers a wide variety of trusted resources that provide accurate, up-to-date breast health information, including the About Breast Cancer (ABCs) pages on Komen.org. Komen’s ABC pages provide unbiased, comprehensive, and accurate evidence- based information in straightforward, patient-friendly language.
For example, not knowing what to expect from chemotherapy can be a source of stress for many people. This is just one of the many areas of support that the ABCs can offer. “Many people have a fear of chemotherapy, maybe even more so than the cancer itself,” Kuhn explains. “But they may not realize that the side effects from chemotherapy can be treated or even prevented because they don’t have that information at hand.” Through the ABCs, people can learn about different available chemotherapy drugs, what to expect during chemotherapy, possible side effects, and much more.
Breaking The FOFO Cycle
The ABCs are just one piece of Komen’s larger ecosystem of trusted educational materials, which include the Breast Cancer Breakthroughs series, Spotlight on Clinical Trials, Know More, and our newest program, Under the Microscope. Like the ABC pages, each of these programs offers updated information that’s drawn from high-quality research, clinical guidelines, and expert-led reviews.
Trusted breast health information empowers people to engage confidently with their doctors and advocate for the best possible care. “By giving people the information they need to make decisions about their health, in collaboration with their healthcare provider, we’re ultimately helping them manage and cope with what they’re facing,” Kuhn says.
The key to breaking the FOFO cycle is to replace fear with action. This can be done by accessing educational resources, or even by speaking with a knowledgeable expert, such as a patient navigator or licensed mental health professional. Komen patient navigator Mari Montesano, who is also manager of the Breast Care Helpline in Komen’s Patient Care Center (PCC), provides strategies to patients to help them face the emotions that can cause FOFO.
“For those who are dealing with complex emotions about their diagnosis, like fear and uncertainty, I think it can be helpful to name the emotion and pinpoint what’s driving it,” Montesano says. “Focusing on the emotion can help people work through it, and ultimately, take more control of what they’re feeling.”
Montesano and her team also share with patients a variety of helpful Komen resources, like the “Questions to Ask Your Doctor” materials, the “Breast Cancer 101” interactive tool, and Komen’s “Clinical Trials” webpage. They also provide resources to help people better understand confusing medical bills and insurance, which also helps minimize the fear and anxiety that comes with not knowing the cost of treatment.
Breaking the FOFO cycle may also include new habits like physical exercise and mindfulness to alleviate stress and anxiety. PCC navigators encourage patients to ease their anxiety by seeking additional emotional support from loved ones and others in the greater breast cancer community. Ultimately, the person who can provide you with the most accurate information and personalized support is your doctor.
“Your doctor knows you and your situation best, and can offer you the appropriate treatment for your breast cancer,” Kuhn says. “After you get a recommended treatment plan from your doctor, study your treatment options. Each treatment has risks and benefits to consider, along with your own values and lifestyle. Together, make thoughtful, informed decisions that are best for you.”
Need someone to talk to? Speak with a culturally responsive PCC navigator via the Susan G. Komen Breast Care Helpline. »
References
- Offer K, Oglanova N, Oswald L, Hertwig R. Prevalence and predictors of medical information avoidance: a systematic review and meta-analysis. Ann Behav Med. 2025;59:kaaf058.
- Prevent Cancer Foundation. 2025 early detection survey. PreventCancer.org. Published 2025. Accessed January 8, 2026. https://preventcancer.org/education-outreach/2025-early-detection-survey/
- Asmundson GJG, Taylor S. It’s Not All in Your Head: How Worrying About Your Health Could Be Making You Sick—And What You Can Do About It. Guilford Press; 2005.
- George S, Duran N, Norris K. A systematic review of barriers and facilitators to minority research participation among African Americans, Latinos, Asian Americans, and Pacific Islanders. Am J Public Health. 2014;104:e16-e31.
- Healthline Editorial Team. State of consumer health. Healthline. October 8, 2024. Accessed January 19, 2026. www.health line.com/health/consumer-health-survey
About the Authors
Jennifer Flores, MS, is a technical writer for Mission Communications and Education at Susan G. Komen. She is responsible for creating a variety of communications materials including research blogs, impact reports, and web content. She is passionate about translating scientific information into more understandable content for broad audiences and creating meaningful messages through storytelling.
Kelsey Hampton, PhD, is Director of Mission Communications and Education at Susan G. Komen, where she oversees a variety of patient education programs designed to translate scientific research and clinical trials to accessible, engaging, and actionable health information for patients. Dr. Hampton received her PhD in molecular and integrative physiology with an emphasis in cancer biology from the University of Kansas Medical Center.
