Pancreatic Cancer Patient Shares Her Top Four Strategies for Coping With Her 'Scary' Diagnosis and Treatment
From leaning on your support system to finding an advocate, here's her advice.
Sarah Zoeller has spent the past 18 months treasuring every day while at the same time eagerly looking forward to starting the next chapter of her life—one that ideally doesn’t include hospital rooms or medical procedures.
In September 2021, Zoeller, 49, who lives in Virginia with her husband and two teenage children, was diagnosed with pancreatic cancer. She'd attended some gatherings with friends and family over the Labor Day weekend, where she had enjoyed a few adult beverages. “Normally, I really like to pay attention to my hydration level when I drink alcohol, and I noticed that my urine was darker than usual,” she says. A few days later, her urine and stool were both still an unusual color. She suspected that she had a gallstone, but after a telehealth appointment with an alert physician’s assistant, Zoeller was sent for an ultrasound, followed quickly by an MRI.
Soon she would learn she had pancreatic cancer. Any cancer diagnosis is tough to hear, but Zoeller didn’t initially realize the gravity of this particular news. “When I received the diagnosis, I was totally unaware of what it meant. I knew it wasn’t good, but little did I know how low the survival rate is of pancreatic cancer. The doctors encouraged me not to read the internet and just focus on the treatment plan. Honestly, I like to know all the information, so I did both.”
Pancreatic cancer is a particularly scary diagnosis because it usually isn’t detected until it has progressed to an advanced stage. This is partly because there are often few, if any, noticeable symptoms in the early stages. “The symptoms I was experiencing were not because of actual cancer, but because the tumor was pressing on my bile duct, causing jaundice,” Zoeller says, noting that some people with pancreatic cancer will notice back pain or digestive issues. “It is always good to have things checked out if something seems off. We don’t pay enough attention to our ‘guts’—often blowing off discomfort or other issues. I am learning that the ‘gut’ is our second brain and a really important indicator of our health.”
In the 18 months since her diagnosis, Zoeller has been through intense chemotherapy, radiation and Whipple surgery (a procedure that removes tumors from the head of the pancreas). She is currently in an immunotherapy trial at Johns Hopkins. Through it all, she has continued to inspire and amaze those around her with her enduring sense of humor, combined with intense determination and resilience.
As Zoeller discovered, the prognosis for patients in her situation is frightening. “At the moment, the two-year survival rates after Whipple surgery are at about 10 percent. Only two years. There isn’t much data beyond that. I am at 10 months. I just try to live each day, happy that I am still here and doing well.”
Zoeller says she and her support system don’t like to focus on numbers. “Odds aren’t something that is really discussed much with pancreatic cancer. So, I focus on survival stories. There are people who have lived 10 or 20 years past their surgeries. I always say I don’t need to be the best. I just need to be in the top 10 percent.”
She also takes every opportunity to stress the importance of research—and the funding that supports it. “Pancreatic cancer is seriously under-researched. There are so few treatments. I am participating in an immunotherapy trial to help that, and last year created a fund-raising team for the PanCAN walk. The more information we can have, the more lives can be saved.”
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A Shocking Diagnosis and a Crucial Advocate
At the time of her diagnosis, Zoeller had been working as a fitness professional, and although nobody is ever prepared to hear the words "you have cancer,” she said it was especially shocking because she was living an extremely healthy lifestyle. “Everyone was like, ‘You're so healthy. You're doing everything right.’ So I think at first I was in shock. And I didn’t know anything about pancreatic cancer.”
Thankfully, Zoeller had a friend who is a medical advocate and provided invaluable help and guidance. “She was the one who basically kicked my butt,” Zoeller says, recalling how her friend helped her research the best programs and facilities—and at one critical point, directed her to go to the ER so she could be admitted and get essential testing performed.
Zoeller said her number one lesson is that you need to ask for help as loudly and strongly as necessary. She recalls that by the time she went to the ER, she was already turning yellow from jaundice, but she had hesitated to seek help because she didn’t want to bother anyone, and assumed someone would reach out to her if there was something she needed to do. She also admits that the thought of entering a hospital at all was emotionally tough because her mother had died in a hospital of bladder cancer five years prior. “Going into the hospital, it was like a little PTSD. But I knew I had to do it. And so I did it.”
Related: Are You at Risk for Pancreatic Cancer? Here's Everything You Need to Know About Screening, Early Signs, and Treatment
Lean On Your Support System and Consider How They Can Help
Although not everyone has a friend with professional advocacy experience, Zoeller said it’s important to have “your person” who can serve as your advocate and fight on your behalf. For starters, she says, it’s helpful to have someone accompany you to appointments who is good at asking questions and remembering (and documenting) details.
As Zoeller discovered, most people are eager to help, but often don’t know how or are afraid of overstepping. She said it’s important for those navigating a medical journey to speak up about what they need—and be specific. It also helps if you (or someone else) can assess your support system and delegate tasks based on each person’s strengths or list a variety of options, so people can pick the way they are best able to contribute.
“Everybody has a different ability to help," Zoeller explains. "Some people want to bring you gifts. Some people want to make you food, some people want to give you information, some people drive for you. One lady gave me her house cleaner.”
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Zoeller says the best way you can help a loved one who is navigating a medical journey is to consider their current needs and think about your skills or strengths that can help. Then, take action without waiting to be asked—because your loved one may not have the mental or physical energy to even think about exactly what they need, let alone assign tasks or make requests. And remember, helping doesn’t necessarily need to involve a huge lift—it can sometimes be as simple as bringing coffee or tea and being a good listener or keeping your friend company while watching TV.
Not surprisingly, technology can help with this. Websites like Caring Bridge (where Zoeller has a page) let people navigating a health journey post updates while also listing ways their loved ones can support or assist them.
Remember Everyone’s Medical Journey Is Different
Zoeller notes that there are so many types of cancer, and so many variations even within the same category. Everyone’s journey will be unique. “There are so many kinds of tumors, and every tumor has a different genetic makeup and reacts differently, so this specific tumor with this genetic makeup might respond to this type of treatment, and it might not.” She says that the majority of patients don’t see positive results from the type of chemotherapy she received—she was among the fortunate minority, and even more so because her body responded well, whereas she knows of other people who ended up in the ER as a result of the side effects.
Acknowledge Challenges While Focusing on the Positive
Although she does have challenging days and the side effects of treatment can be tough, Zoeller says she strives to be as optimistic and upbeat as possible. “I have two beautiful children, and I'm so happy that I'm here with them. I want to get them through high school, and then college, and then I want them to get married, and I want to have grandkids. I just take one step at a time and focus on getting through each day. When I feel really bad, I just try to do all the things that make me feel good, like facials and massages.”
Next up, find out how cancer survivor Robin Roberts is passionately pushing for equality in healthcare.