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A pancreatic cancer diagnosis can come with a range of emotions. Shock, sadness, anger, frustration, regret. All of them are valid.
“Cancer is difficult to navigate and the feelings that bubble up are very individual,” said PanCAN Patient Services Manager of Research and Education Communications Nicolas Clifford, MS. “And these feelings can change especially depending on where someone is with their diagnosis. Naming and acknowledging emotions can help to navigate what you’re facing and figure out a path forward.”
It can be helpful to think through questions about your own personal values, as well as treatment goals, perhaps in partnership with a trusted loved one. Writing thoughts down and keeping them all in one place can help track changes over time.
This exercise can set up important conversations not only with your family but also with your healthcare team – with your values at the heart of the discussion. You are your own best advocate.
“You should feel free to always express hopes, goals, worries, fears and anything else with your healthcare team,” said Nic. “Advocacy means speaking up for your goals and wishes.”
Below are examples of some questions to ask yourself to start this process. Having this information handy will help center conversations with your healthcare team.
Understanding Your Diagnosis
- What is my understanding of my diagnosis, and where I am on my treatment journey?
- What questions do I still have? What do I find confusing, or what do I want to learn more about?
- What are my goals and priorities during treatment?
- Who are the members of my healthcare team? Are there people I want to add? Consider professionals like a dietitian, a supportive care specialist or social worker.
Discussing Personal Values
- What are my fears or worries about the future?
- What brings me joy and comfort in life?
- What parts of my life am I ok with giving up on my journey? What do I want to hold on to, no matter what? (examples: independence, enjoying meals, time with family, things that bring joy)
- When I think about living with pancreatic cancer and how it may impact my life, what are my goals?
- Considering my values, wishes and goals of treatment, what do I want my treatment journey to look like? (Thinking about the physical, social, emotional and spiritual aspects of life)
The answers to these questions may change throughout the course of a patient’s experience – and that’s okay. Checking in on what you’re feeling can help guide decision-making, fostering trust and deeper discussions.
Knowing your goals and your non-negotiables will help guide a treatment path that’s best for you. Patients should not be afraid to ask about supportive (palliative) care at every step in the journey. Supportive care professionals are there for every person with a serious or chronic illness, from diagnosis and beyond. Their priority is your comfort and quality of life.
Ultimately, treatment and care decisions are very personal and should be made with your goals and values in mind. Every person will have a different idea of what treatment and everyday life should look like.
No one is alone in navigating pancreatic cancer. PanCAN Patient Services can answer questions as well as offer resources, said Nic, including cancer support groups and supportive care specialists. PanCAN can also help connect you with mental health professionals in your area.
“We speak with such a wide range of people touched by pancreatic cancer, every day,” Nic said. “From people living with pancreatic cancer, to concerned colleagues and friends curious how they can help, to immediate and chosen family members who want to learn more, Patient Services is here to help. We know the impact a pancreatic cancer diagnosis can have on everyone. We can help ease the worry and anxiety with specialized education and support.”
