Living with metastatic pancreatic ductal adenocarcinoma (PDAC) can change your life in different ways. Doctor visits might take up a lot of time. Treatments can weaken your body. You may also struggle to cope with an uncertain future.
But your diagnosis doesn’t have to define you. There are still ways to find joy and connection each day. You can feel more in control if you speak up for yourself, take care of your health, and find support. Living well with metastatic PDAC might take some effort, but it’s worth it.
What Physical and Emotional Challenges Will You Face?
A diagnosis of metastatic PDAC can take a toll on both your body and your mind. When PDAC spreads, surgery isn’t an option. That means treatment is usually not as successful. Your days can be filled with both tough emotions and physical symptoms.
“PDAC is a difficult disease all around,” says Tyler Johnson, MD, clinical associate professor of medicine and oncology at Stanford University Medical School. “The days can be long, and the months can pass too quickly.”
You might experience negative emotions like:
- Stress or anxiety
- Fear
- Anger
- Sadness or depression
- Loneliness
- Guilt
It’s normal to have these feelings and they can change from day to day. There’s no right or wrong way to feel when you’re living with a serious disease.
You may also face physical symptoms like:
- Pain
- Tiredness
- Weakness
- Trouble sleeping
- Changes in appetite
- Nausea, vomiting, or digestive issues
Caring for Your Mental and Physical Well-Being
You can still live a meaningful and fulfilling life with metastatic PDAC. Caring for your emotional and physical health is an important part of that. Your quality of life naturally improves when you feel better.
If emotions become difficult to manage, you might want to speak to a mental health professional or someone you trust.
“Mental and emotional health are vital during what can be an arduous, unpredictable, and taxing journey,” says Johnson. “I recommend deepening the bonds you have with those who care about you the most.”
Deep breathing exercises, like meditation or guided imagery, can also help ease stress.
Some ways to maintain your physical well-being may include:
- Eat nutritious, whole foods as often as possible.
- Stay active with gentle movements, like walking, stretching, or yoga.
- Rest when you’re tired.
- Avoid tobacco and alcohol.
What about palliative care?
You may want to ask your doctor about palliative care. This approach is an extra layer of support for people with cancer at any stage of the disease.
Simply put, palliative care is a plan that helps you feel more comfortable. You may receive treatments to control pain and other side effects. Additionally, your team might provide emotional support and resources for you and your family. They can even connect you with a spiritual expert who shares your beliefs.
What Role Does Self-Advocacy Play?
Self-advocacy can help you feel more in control after a PDAC diagnosis. Being a self-advocate means that you:
- Take an active role in your care decisions.
- Speak to your health team about your needs.
- Educate yourself about your disease and treatment options.
“In my way of seeing things, more information is pretty much always a good thing,” says Johnson. “Given this, I would ask your doctor to be clear with you about the goals of therapy and about the likely prognosis.”
Other questions you may want to ask your doctor:
- What type of pancreatic cancer do I have?
- Where has my cancer spread?
- Did you test my tumor for genetic mutations? What were the results?
- What are my treatment options? Why do you recommend those treatments?
- What are the pros and cons of these therapies?
- What kind of side effects can I expect?
- Do I qualify for a clinical trial? Why or why not?
Some sites that provide credible information about PDAC are:
- Pancreatic Cancer Action Network (PanCAN)
- American Cancer Society
- Hirshberg Foundation for Pancreatic Cancer Research
- The National Pancreas Foundation
Because metastatic PDAC is such a serious disease, you may want to get a second opinion. Another doctor may offer a different treatment option or confirm your doctor’s recommendation. Or they might connect you with research studies offered at different clinics.
Making the most of your doctor’s visits
Your medical appointments run more smoothly if you come prepared. Here are some tips:
- Write down questions and bring them to your visit.
- Take a family member or friend to the appointment.
- Tell your doctor about all the symptoms you have.
- Answer questions honestly.
- Don’t be afraid to say you don’t understand something.
Building your care team
Having a strong care team is important if you have metastatic PDAC. Each member brings different expertise and support. They can help you understand your options and make informed decisions.
Often, different health providers will work together to help with your care. This team may include the following:
- Medical oncologist
- Surgeon
- Gastroenterologist
- Radiation oncologist
- Different types of nurses
- Palliative care experts
- Mental health professionals
- Dieticians
- Social workers
Getting Support
Having a solid support system makes living with metastatic PDAC easier. Family and friends can offer comfort and help with your daily needs. A caregiver might coordinate your appointments and keep track of your medicines.
“It is vital to gather close around you those who love you the most and to find ways you can lean into communities that hold you up,” says Johnson. “I am a big fan of church, in part, for exactly this reason, though some similar benefits can be found with civic organizations, sports teams, or anywhere else you can find in-person embodied community.”
Support groups are another option. They connect people living with PDAC with others who understand what they’re going through. Support groups offer a safe place to share feelings, ask questions, and learn from others. You can ask your doctor how to find a group or check out these resources:
“This is not a time to doomscroll or get lost in the haze of the digital world,” adds Johnson. “My advice would be to find a way to connect with actual, embodied, loving, imperfect people.”
Keeping a Positive Outlook
Staying positive when you have PDAC can be hard, but it may help improve your quality of life. Focus on what you can control, like staying on top of your appointments and medications. Some people also feel empowered when they learn more about the disease and their treatment options.
Try not to dwell on cancer statistics or worry too much about what the future may bring.
“Bell curves detailing average survival are not the same as individual patient stories. There are always those who live on the edge of the bell curve — and we never know who those people are until we start treatment,” says Johnson.
The bottom line: Every case of PDAC is unique. People respond to therapies in different ways. Your journey is your own, and statistics can’t predict exactly what your future will look like.
“Your story is not yet written, and no one knows the ending; you can only discover its arc by living it, as best you can, one day at a time,” Johnson says.
Show Sources
Photo Credit: E+/Getty Images
SOURCES:
Columbia University Irving Medical Center: “Coping With Pancreatic Cancer,” “Patient Self-Advocacy,” “Pancreatic Cancer Questions to Ask the Healthcare Team,” “Healthcare Team Member Roles.”
Pancreatic Cancer Action Network (PanCAN): “Stage IV Pancreatic Cancer.”
National Cancer Institute (NCI): “Emotions and Cancer,” “Support for Caregivers of Cancer Patients.”
American Cancer Society: “Signs and Symptoms of Pancreatic Cancer.”
Siteman Cancer Center: “8IGHT WAYS® to Stay Healthy Beyond Cancer.”
Cleveland Clinic: “Palliative Care.”
Get Palliative Care: “Cancer and Palliative Care.”
Canadian Cancer Society: “How to advocate for yourself during cancer treatment.”
