The coronavirus disease (COVID-19) pandemic is uprooting much of our daily lives. For pancreatic cancer patients and their loved ones, worries about the virus as well as how restrictions and precautions affect their cancer care combine to create many additional concerns.
Since 2002, the Pancreatic Cancer Action Network’s (PanCAN) free Patient Central call center has been answering questions and providing trusted resources for patients and their loved ones when they need it most.
This pandemic has been no exception.
Many of the questions and concerns patients and families have right now are similar to what they have always been: How is pancreatic cancer diagnosed? I was just diagnosed – now what? How do I find a specialist? How can I find a clinical trial? What can I do to manage symptoms and side effects?
But there have been so many new questions and experiences, too. Our Patient Central team has been helping patients and their loved ones through coronavirus-related questions and challenges, like:
- Does having pancreatic cancer put me at higher risk of getting the coronavirus or having complications if I get it?
- My treatment or appointment has been delayed. What should I do? Is there somewhere else I can go?
- What do I need to ask my healthcare team right now?
- My family member has pancreatic cancer, and I live in another state. Can I go visit them?
- My support group isn’t meeting anymore. How can I connect with others who are going through this? How can I get emotional support?
- I can’t go with my loved one to their doctor’s appointments or when they get treatment. How can I still support them and be involved in their care?
- Is it safe for me to travel this summer?
- My spouse has pancreatic cancer. Is it safe for me to go in to work?
To make matters even more difficult for pancreatic cancer patients and their families – fears, restrictions, guidelines and risk management keep changing as the pandemic evolves over time.
But the fact that the pandemic is creating more challenges for patients and their loved ones has not changed.
Patients are still fearful about going to appointments or getting treatments. Many wonder if they should postpone. Specialists advise that most patients should continue getting their pancreatic cancer care.
On the flip side, as healthcare providers and facilities struggle to keep up with the influx of COVID-19 patients or to adjust procedures to keep patients safe, many pancreatic cancer patients have had their appointments and treatments delayed or cancelled. Some find that clinical trials they’re interested in are not enrolling new patients. Some healthcare teams are hard to reach.
PanCAN’s Patient Central has been helping patients find other specialists, treatment options and open clinical trials as needed throughout it all.
Healthcare teams and hospitals are doing their best to ensure patient safety while providing critical patient care. Many hospitals have been able to provide pancreatic cancer treatment during even the peaks of the pandemic, but others haven’t been able to do so.
Some appointments have moved to telemedicine, which has helped some patients still have their appointments with their doctor while not risking coronavirus contact.
As the pandemic wears on, safety protocols have been put into place and are being fine-tuned, so more care can return. Many clinical trials that had stopped enrolling new patients opened enrollment back up.
Through it all, when patients can go to appointments and treatment sessions, they often have to go alone. Many caregivers express concerns about the patient not having an advocate in the room to hear the healthcare team’s feedback, ask questions and help the patient navigate choices. Patient Central is providing questions for patients to ask their healthcare team and tips to help patients get the most out of these appointments.
Patients are also often physically isolated from family members and friends. While many support groups have gone virtual, some have stopped meeting entirely. The experience has been isolating for many.
Caregivers are under more stress, too. Many are worried about exposing their loved one to the coronavirus. Some have also lost their support as they try to limit the number of people they and the patient come into contact with.
Many patients and their families are finding PanCAN’s Survivor & Caregiver Network especially helpful, as they can speak to others who are having similar experiences by phone or email. It makes them feel less alone.
Travel – which may normally be needed for pancreatic cancer patients to get second opinions, see a specialist or enroll in a clinical trial – has become a challenge. For many, it is no longer an option.
On the other hand, many patients enrolled in clinical trials far from their home are now able to get some of the scans and treatments done locally rather than having to travel for every trial need – a convenient practice many hope will continue even after the coronavirus pandemic.
Other patients are having difficulty getting a diagnosis. One shared that it took a great deal of self-advocacy to get an imaging test, which showed she had a tumor on her pancreas and led to a pancreatic cancer diagnosis.
PanCAN encourages patients to get on the Right Track – seeing a specialist, getting tumor biomarker testing and genetic testing, and considering clinical trials as well as treatment based on their biology – for better outcomes. During the pandemic, patients have had difficulty with every step in this process. Yet these steps haven’t lost their importance.
Self-advocacy and patient support have never been more critical.
At this especially difficult time, PanCAN’s Patient Central can help patients and their loved ones navigate the realities and challenges of facing a pancreatic cancer diagnosis.
PanCAN’s Patient Central is a free resource for patients thanks to the support of generous donors. Support patients by making a gift today.