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Talking about pancreatic cancer can be hard because it may involve intense emotions. You may experience strong feelings of fear and uncertainty. These emotions can affect loved ones as well as the person diagnosed. But communication is key to make sure that the patient feels supported.
Support for the pancreatic cancer patient is critical to improve quality of life and well-being. Having a support system of caregivers, family, friends, healthcare professionals and a patient advocate is important to address and manage the needs of the patient.
The information on this page can help improve communication between patients and their loved ones when having hard conversations.
How to Talk About Diagnosis
Patients may worry about how their families will cope with their diagnosis. But patients do not need to tell their families alone.
Patients can consider sharing the news first with one person who is especially close to them. This may be a partner, family member or close friend. This person can be by the patient’s side when sharing the news with other loved ones. Or, patients can ask this person to tell the rest of the family on their behalf.
Patients, and anyone they ask to help them, can prepare in advance for the conversation with their family. They can plan to cover topics like:
- The cancer’s name
- Treatment options
- Treatment side effects
- The patient’s feelings
Having a resource to give family members more information may also be helpful. Patient Central can answer questions loved ones have about the disease. The Pancreatic Cancer Action Network’s free educational packet may also be helpful to have on hand.
Patients can share as much information as they feel comfortable. They also may not have answers to every question they’re asked. It’s all right for them to say this openly.
Also, patients may want to speak with other pancreatic cancer survivors about their personal experiences. The Pancreatic Cancer Action Network’s Survivor & Caregiver Network can connect you to others to do this.
If communication becomes too challenging, get help from professionals to discuss difficult topics. Patient Central can also be a helpful resource for patients and their families.
Talking to Young Children
Often, young children need more support to help them cope with the news. Patients and family members can let young children know:
- Cancer is not contagious, meaning that they won’t catch the disease from the patient.
- The cancer was not caused by something they did or didn’t do. This is important, as children can blame themselves when someone, like a parent, gets sick.
- It is normal to experience a range of feelings such as sadness, anger and fear. It’s OK to cry.
- This news can cause people to have good days and bad days.
- They are loved and cared for, which won’t change no matter what happens.
Young children may ask simple questions, like where the pancreas is in the body, or they may ask more difficult questions. Plan for these questions and think of responses before the conversation.
Children under 8 years old do not need detailed information. Older children and teenagers need and deserve to know more.
Talking About Prognosis
The healthcare team can give a prognosis, an educated guess about how the disease will go for the patient and what the chances of survival may be. This is based on many factors, like the patient’s stage, type of pancreatic cancer and overall health.
But pancreatic cancer is a very individual disease, and it affects everyone differently. The patient’s experience will be unique to them.
Patients may decide if they want to know their prognosis. Family members should respect this choice.
Similarly, family members may want to know their loved one’s prognosis, or they may prefer not knowing. Patients can ask family members how much they want to know.
How to Talk About Treatment
Patients need to talk about their treatment goals with their healthcare team and their family. An example of a treatment goal may be to explore clinical trials. Or, it may be to control symptoms and feel comfortable.
Treatment goals can change, so patients can discuss this topic with their families on an ongoing basis. Patients must be honest about their needs and wants so their loved ones can honor their wishes.
Family members need to support their loved one’s treatment decisions, whether or not they agree with them. Discussing this topic with a social worker or other professional counselor may help.
For information at any point about pancreatic cancer treatment options or questions to ask your healthcare team, contact Patient Central.
Communication Tips for Family Members
Open and honest communication is key. But at times, patients may feel too emotional, weak or tired to have these conversations. At these times, patients need more help communicating with their loved ones.
To help make communication easier for patients, family members can:
- Go to doctor visits with their loved one to be another pair of ears and to stay up-to-date.
- Listen to recordings from doctor’s appointments rather than asking their loved one to relay that information.
- Take cues from their loved one. There may be times when they are more open to discussing certain topics.
- Be a good listener and ask questions.
- Realize their loved one may not know all the answers. Family members may need to do research on their own to help make decisions.
- Understand that one conversation is not enough to solve all problems. Agree to revisit the topic later, as needed.
- Support their loved one’s decisions.
- Be present. Even when it is hard to find the “right words to say,” family members can let their loved one know that they are there to listen and give them support.
- Spend time together doing things their loved one enjoys.
Everyday concerns continue even with a cancer diagnosis. Keep discussing practical issues like changes in routine.
Not every conversation family members have with patients must be about pancreatic cancer. Patients and family members should keep up daily routines and enjoyable activities as much as possible. This helps create feelings of safety and normalcy, which is especially important for patients and children. It also helps support stronger communication.
We’re Here to Help
For resources and information to support those diagnosed with pancreatic cancer and their family members, contact Patient Central.
Information reviewed by PanCAN’s Scientific and Medical Advisory Board, who are experts in the field from such institutions as University of Pennsylvania, Memorial Sloan-Kettering Cancer Center, Virginia Mason Medical Center and more.