Study: Impact of mental healthcare among those with increased pancreatic cancer risk
Pancreatic cancer is often aggressive and diagnosed at a late stage, which can lead to uncertainty and fear. For those at risk due to a genetic mutation or family history, access to surveillance and mental health support is essential to help manage the emotional impact. (Posted 5/12/25)
RELEVANCE
Most relevant for: People with hereditary pancreatic cancer risk or strong family history of pancreatic cancer.
It may also be relevant for:
- people with a genetic mutation linked to cancer risk
- previvors
- people with pancreatic cancer
- people with a family history of cancer
Relevance: High
Strength of Science: Medium
What are these studies about?
Cancer risk can significantly affect both physical and mental well-being. Pancreatic cancer, which is often aggressive and diagnosed at later stages, may be particularly invasive and unpredictable.
Two studies explored the mental health effects of being at high risk for pancreatic cancer and how these risks impact individuals throughout their healthcare journey. While both studies examined the impact of high pancreatic cancer risk on the mental and emotional well-being of participants, each one emphasized different aspects. In one study, the researchers explored the uncertainty that patients experience regarding their health and cancer risk. In contrast, researchers in the second study investigated the mental health effects of routine cancer screenings.
It is important to note the benefits and risks from pancreatic cancer screening. While potential benefits include identifying pancreatic cancer early, greater sense of control and ability to take action, risks include anxiety about screening and rare complications from the screening procedure (endoscopic or EUS). Although rare, these physical risks can include bleeding, perforation or inflammation of the pancreas (acute pancreatitis). People considering pancreatic cancer screening need to balance these physical and emotional risks and benefits.
Together, these studies highlight the emotional challenges faced by high-risk individuals while underscoring the relief that surveillance can provide. They also emphasize the need for supportive healthcare strategies, such as counseling, stress management techniques and mental health referrals to help alleviate distress and improve overall well-being.
| What was studied | How the study was completed | Key findings | Why it matters |
| Emotional Impact of Pancreatic Cancer Screening | Surveys and psychological assessments of 336 high-risk individuals in long-term screening programs. | Screening gives some peace of mind but also may bring stress, especially while waiting for results. | People need emotional support along with screening to manage fear and uncertainty. |
| Living with Risk and Uncertainty | In-depth interviews of 19 individuals with inherited pancreatic cancer risk. | High-risk individuals often feel anxious about the unknown but find comfort in staying informed and proactive. | Clear, supportive communication from healthcare providers can ease anxiety and help people feel more in control. |
Why are these studies important?
Understanding the emotional and mental struggles of people at increased or high risk for pancreatic cancer can help caregivers provide better support. Recognizing these challenges allows healthcare providers to offer more well-rounded care that meets patients’ physical and emotional needs.
Additionally, both studies help raise awareness of the difficulties high-risk individuals face, highlighting the need for improved resources and support systems in healthcare.
Study
Coping with Uncertainty
The researchers conducted interviews with 19 individuals who had an increased risk of pancreatic cancer, examining their uncertainty about their risk. The main concerns of those interviewed included not fully understanding their level of risk, coping with ongoing surveillance and fear of death. Some participants responded to their risk by staying proactive with health checks, while others experienced anxiety and distress.
The study highlighted that uncertainty is a common aspect of medical care, particularly when dealing with cancer risk. Uncertainty may not be entirely avoided, and trying to eliminate it may not always be helpful. However, understanding how individuals cope with uncertainty allows healthcare providers to create strategies that help patients manage it more effectively.
For some, surveillance provided comfort. One participant shared, “…I do realize that I can’t control it. The only way I can control it is by going for the screenings. There is new technology, discoveries and cures every day…”.
Impact of Screening
A 2024 study evaluated the responses of 100 individuals at increased risk for pancreatic cancer before and after undergoing surveillance. While participants remained aware of their risk, those in surveillance reported minimal mental distress, and their stress levels decreased after their surveillance procedure.
Nearly all participants (97%) reported that the possibility for early detection of cancer or pre-cancer was a motivation for screening. Most participants also shared the following motivations for undergoing surveillance:
- Reduced fear of pancreatic cancer
- A sense of control over their health
- A recommendation from a healthcare provider
- The loss of a family member to pancreatic cancer
- Concern for their children
- Contribution to scientific research
Addressing emotional aspects of pancreatic cancer screening
Both studies underscore the importance of enhancing communication and integrating mental health support into the care of high-risk pancreatic cancer patients.
Suggested improvements include:
- Increase Patient Education: Providing more information and support resources can help patients make informed decisions about their health.
- Conduct Regular Check-Ins: Healthcare providers should have regular conversations with patients to discuss their concerns, feelings and coping strategies related to their cancer risk and surveillance.
- Involve Mental Health Professionals: Including mental health experts in the care team can help patients deal with emotional challenges.
- Create Support Networks: Establishing support groups for high-risk individuals can help them feel less isolated and share experiences with others who are going through similar situations.
- Continue Research and Advocacy: Ongoing research into the mental health effects of being at high risk for cancer is crucial. Advocating for policy changes can ensure that mental health resources are prioritized in cancer care, leading to better support for high-risk patients.
What does this mean for me?
These studies highlight an important but often overlooked aspect of facing pancreatic cancer: the emotional journey. An increased risk of cancer can lead to fluctuating emotions—feeling overwhelmed one moment and managing well the next. Though it is common to experience a mix of emotions, taking care of your emotional well-being is as important as taking care of your physical health.
If you feel overwhelmed, asking your provider to clarify your risk may help reduce uncertainty. Additionally, healthcare providers can provide referrals to mental health providers with expertise in helping cancer patients. Open discussions with mental health providers about fears, coping strategies and the potential benefits of surveillance may ease distress.
Overall, integrating mental health support into the care of high-risk pancreatic cancer patients and improving communication between patients and healthcare providers are helpful approaches to addressing anxiety and uncertainty.
If you are feeling overwhelmed, it is appropriate to ask questions, express your concerns or seek support from counseling or peer groups. FORCE has support group meetings for various groups to help meet the needs of the community (information on ongoing support groups can be found here). Being seen, heard and supported can help you feel more in control, no matter where you are on your journey.
Anez-Bruzual I, Coughlin S, Clay D, et al. Assessment of the psychosocial impact of pancreatic cancer surveillance in high-risk individuals. Cancers. 2024;16(1):86. https://www.mdpi.com/2072-6694/16/1/86
Underhill-Blazey ML, Zhang Y, Stanek S, et al. The experience of uncertainty in individuals with high risk for pancreatic cancer. Cancer Nursing. 2022;45(6):E123–E130.
Disclosure: FORCE receives funding from industry sponsors, including companies that manufacture cancer drugs, tests and devices. All XRAYS articles are written independently of any sponsor and are reviewed by members of our Scientific Advisory Board prior to publication to assure scientific integrity.
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posted 5/12/25
Questions To Ask Your Doctor
- What factors contribute to my high risk for pancreatic cancer?
- What surveillance methods do you recommend for monitoring my health?
- What resources are available for mental health support related to my risk?
- How can I best communicate my concerns or changes in my health to you?
- Are there lifestyle modifications I can make to reduce my risk of pancreatic cancer?
Guidelines
National Comprehensive Cancer Network (NCCN) Guidelines
The NCCN recommends the following for people at increased risk for pancreatic cancer:
- Discuss the benefits and risks of screening with their doctor. Screening should be performed by a facility that is experienced with pancreatic cancer screening. The recommended age for considering screening depends on a person’s family history of pancreatic cancer and varies by type of gene mutation.
- Consider screening with magnetic resonance cholangiopancreatography (MRCP) and/or endoscopic (EUS).
- Consider participating in a pancreatic cancer screening study.
The NCCN recommends that people with inherited mutations in the following genes (with or without a family history of cancer) "consider pancreatic cancer screening" with MRCP or EUS:
- (): Consider pancreatic cancer screening every 1-2 years, beginning at ages 30-35 or 10 years younger than the earliest pancreatic cancer in the family.
- : Consider pancreatic cancer screening beginning at age 40 or 10 years earlier than the earliest pancreatic cancer diagnosis in the family.
- and : Consider pancreatic cancer screening beginning at age 50 or 10 years earlier than the youngest case of pancreatic cancer in the family.
NCCN guidelines recommend that people with an in , , , , , , or and a family history of cancer "consider pancreatic cancer screening" with MRCP or EUS, beginning at age 50 or 10 years earlier than the earliest pancreatic cancer diagnosis in the family.
The NCCN does not currently recommend pancreatic cancer screening for people with the above mutations who do not have a family history of cancer.
American Society for Gastrointestinal Endoscopy (ASGE) Guidelines
In February 2022, the ASGE released updated guidelines on pancreatic cancer screening for people with a or mutation. These guidelines recommended:
- All patients with a mutation, regardless of a family history of pancreatic cancer, should undergo annual screening for pancreatic cancer with MRI/MRCP or EUS, beginning at age 50 or 10 years earlier than the earliest pancreatic cancer in the family.
Updated: 10/23/2024