In June 2023, Jaclyn Hayes was 35 and pregnant with her second child when she was struck by severe pain in the right side of her back. That was quickly followed by a fever, chills, and body aches. Her doctor thought it was a urinary tract infection and prescribed antibiotics. The possibility of it being anything truly serious was not discussed.
“The next day I woke up, and I was feeling miraculously better,” recalls Hayes, who lives in River Edge, New Jersey. “All my flu-like symptoms went away.”
A month later, the symptoms returned. She went back to the hospital, and this time, blood tests showed abnormally high liver enzymes. She stayed the night, and her test results improved.
“They discharged me and sent me on my way with no explanation of what was going on,” Hayes says.
Over the next month, her appetite changed, and she started to feel an unfamiliar sense of fullness. Her stomach seemed to be harder to the touch than in her previous pregnancy. She went back to her doctor in August and pushed for an explanation. She felt that because of her pregnancy, the doctors had focused solely on her unborn baby.
“Can we check me and not just the baby?” she asked her doctor.
Within a few days, Hayes had imaging tests. An ultrasound revealed lesions on her liver. A CT scan showed a tumor on her pancreas. A biopsy was required to confirm the diagnosis, but one doctor explained what the tests likely meant.
“It looks like it’s stage IV pancreatic cancer,” Hayes recalls the doctor telling her. “I didn’t even know what stage IV meant at that time.”
Pancreatic cancer begins in your pancreas, an organ in the abdomen that produces insulin and helps you digest food. It accounts for 3 in every 100 cancers, according to the American Cancer Society, which estimates that 67,530 people in the US will be diagnosed with pancreatic cancer in 2026.
By stage IV (the final stage), pancreatic cancer has metastasized, meaning it has spread beyond the pancreas. When this happens, it typically affects nearby organs such as the liver. If it gets into the lymph nodes, it can affect the lungs, bones, and other parts of the body. At this stage, only about 3% of people live longer than five years.
Hayes was devastated and frightened, but she also felt a sense of anger.
“I was angry that something so severe was completely overlooked, that I hadn’t been listened to when I could tell something was wrong,” she says.
How Can Pancreatic Cancer Be ‘Missed’ Early On?
As Hayes would learn, a late diagnosis like hers is the rule, not the exception, in pancreatic cancer. About 4 out of 5 people are not diagnosed until stage IV, according to gastrointestinal oncologist Shubham Pant, MD, the director of clinical research at the Sheikh Zayed Center for Pancreatic Cancer Research at The University of Texas MD Anderson Cancer Center in Houston, Texas.
What delays the diagnosis? Primarily, the absence of symptoms in its early stages, when it’s most treatable.
“Essentially, by the time patients have very clear signs and symptoms, it's often quite advanced in terms of its stage,” says oncologist Deirdre Cohen, MD, co-director of the Center of Excellence for Pancreatic Cancer at the Mount Sinai Tisch Cancer Center in New York City, New York.
Cohen also points out that, unlike colon and breast cancer, no widely used screening test exists to detect early signs of pancreatic cancer. At least not yet. Cohen says researchers are hard at work on such tests, and she’s hopeful that a screening test will become a reality within the next decade.
For now, given the rarity of the disease, early detection remains focused mainly on people with a high risk of pancreatic cancer. This includes those with a family history of the disease because it sometimes can be caused by an inherited gene mutation, says oncologist Anna Berkenblit, MD, chief scientific and medical officer at the Pancreatic Cancer Action Network (PanCAN) in El Segundo, California.
“If somebody with pancreatic cancer has a known inherited mutation, then you can test the other family members and figure out who else has that mutation,” Berkenblit says. “And then they need to be screened and in a surveillance program.”
Unfortunately, even when it’s diagnosed before it has spread, this cancer still can be deadly.
“Even after surgery and other therapy, there’s a 50%-70% chance of the cancer coming back,” says Pant.
Signs that are easy to miss
When symptoms begin to develop, they’re easy to mistake for something less serious. Such symptoms include:
“Those symptoms can be nonspecific and mimic a lot of other things,” says Pant.
Common diagnoses before pancreatic cancer
Conditions that have similar symptoms, all of which are more common than pancreatic cancer, include:
- Heartburn due to acid reflux or gastroesophageal reflux disease (GERD)
- Gallstones or other gallbladder diseases
- Irritable bowel syndrome
- Muscle pain
- Diverticulitis, a type of intestinal inflammation
In some cases, pancreatic cancer causes jaundice, a yellowing of the skin and eyes. This will get your doctor’s attention. For some patients, jaundice results from a very small tumor.
“Those are the folks who are most likely to be able to get surgery to remove the entire cancer and potentially have it be cured,” Berkenblit says.
But often, jaundice does not begin until the cancer can no longer be treated by surgery, she adds.
For Hayes, her age was another factor that delayed diagnosis. Most pancreatic cancers develop in people in their 60s or older. Hayes did not fit the profile. Neither did Elise Tedeschi.
Tedeschi, who lives in Atlanta, Georgia, was 42 when she learned she had stage IV pancreatic cancer. Like Hayes, back pain was an early symptom.
“As it got progressively worse, I was like, this is not a usual back pain,” she recalls. “I’d had issues with my lower back, and this felt completely different.”
At one point, while on vacation with her husband and two young children, she felt a different kind of pain.
“I remember waking up in the middle of the night feeling like my stomach was on fire,” she says.
A sonogram showed something on her liver, but the doctor who examined her insisted, without explanation, that it wasn’t cancer.
Months passed, during which time Tedeschi switched to a new doctor, who ordered a CT scan. It showed a tumor on her pancreas, but the oncologist who reviewed the scan doubted it was pancreatic cancer.
“He told me, you’re way too young. It’s got to be something else,” she says.
It wasn’t. After nine months, following tests at a cancer center in Florida where her sister had been treated for breast cancer years ago, Tedeschi at last received a diagnosis: stage IV pancreatic cancer. It had spread to her liver and lungs.
How Is Pancreatic Cancer Diagnosed?
Once your doctor suspects pancreatic cancer, you will undergo blood tests, imaging tests, and biopsies. These tests include:
Pancreas-protocol CT scan. This test produces a series of high-resolution images of your pancreas as well as other nearby organs and blood vessels. These images are created by an X-ray machine linked to a computer. You will be injected with a contrast dye that makes the images easier to interpret. CT scans help diagnose and stage pancreatic cancer and guide treatment decisions.
Endoscopic ultrasound and biopsy. In this test, your doctor will gently move a thin, flexible tube called an endoscope down your throat and into your intestine. A probe at the tip of the endoscope uses sound waves to create images of your pancreas. During this procedure, your doctor will perform a biopsy, using either a needle or a brush to collect cell samples for lab analysis. The imaging helps diagnose cancer, while the biopsy is needed to confirm the diagnosis.
CA-19-9 number. This is a blood test that measures a protein called carbohydrate antigen 19-9, which is produced by cancer cells. High levels of CA-19-9 may indicate pancreatic cancer, but a biopsy is needed to confirm the diagnosis.
How Fast Does Pancreatic Cancer Develop?
Pancreatic adenocarcinoma is the most common type of pancreatic cancer. Considered a very aggressive cancer, it develops rapidly in the pancreas and then advances quickly to its later stages, where it affects other organs. “It tends to metastasize very early, when the tumor is still very small in the pancreas,” says Pant.
Usually, it moves first to nearby areas, such as the bile ducts, duodenum, and blood vessels. If cancer cells get into the bloodstream or lymph nodes, they can move throughout the body and cause tumors to form in organs like the liver and lungs, as well as the membrane that lines the abdomen and pelvis, called the peritoneum.
Could It Have Been Found Earlier?
In most cases, pancreatic cancer can’t be found early because patients don’t have early symptoms that indicate a problem. The symptoms don’t develop until the cancer has already reached later stages. And even after they develop, most symptoms are vague. That further slows diagnosis, as it’s standard practice for a doctor to look for more common causes first, such as acid reflux or back pain from musculoskeletal issues.
“Doctors who get presentations of these types of vague symptoms typically rule out more common diseases first before looking for pancreatic cancer,” says Cohen.
Tedeschi understands the challenges of diagnosing pancreatic cancer. However, what she went through before her diagnosis made her angry.
“I was seeing an internal medicine doctor who really kept blowing me off about my pain,” says Tedeschi. Other doctors also did not take her concerns seriously.
“My worst memories are going through all that pain and getting no answers,” says Tedeschi. “And the pain just kept getting worse.”
Did I Miss Something?
Jessica Waldman, LCSW, an oncology outpatient social worker at The Mount Sinai Hospital in New York City, says it’s common for people diagnosed with pancreatic cancer to blame themselves for not seeking care sooner or pushing for testing. That’s a normal reaction, but it can lead to self-criticism, she adds. It’s important to address these feelings.
“I encourage patients to consider the context in which their symptoms first appeared,” she says. “Many symptoms are common and can be associated with a variety of less serious conditions.”
In short, you had no reason at the time to suspect pancreatic cancer. Therapy, such as cognitive behavioral therapy, can help you realise that none of this is your fault.
“The goal is to reduce self-blame, foster self-compassion, and help patients focus their energy on coping with their diagnosis and moving forward,” she says.
Another common reaction is anger and frustration at the medical system, says Fatima Zelada‑Arenas, MA, senior director of patient services at PanCAN.
“Why don’t we know more about this disease? Why aren’t there better diagnostic tools? Why isn’t there a blood test or something like mammograms? These are the questions we often hear,” says Zelada‑Arenas.
Coming to Terms With Your Diagnosis
“Anger, frustration, fear, sadness, grief, and shock — these are emotions we often see when someone receives a diagnosis of late-stage pancreatic cancer,” says Zelada‑Arenas.
Waldman agrees.
“Creating a safe space for patients to express and process these emotions is an important part of the adjustment process,” she says. “As patients begin to move forward, I encourage them to focus on areas where they can find support, meaning, and a sense of control. This often includes leaning on family and friends, participating in support groups, and staying engaged in their treatment plan.”
Zelada‑Arenas recommends getting educated about the disease and what treatment will involve.
“Being informed and knowing what to expect is critical when you have a diagnosis like this, as is having good, open communication with your health care team,” she says.
Both Hayes and Tedeschi stress the need to stay positive as much as you can.
“A positive outlook is probably the best medicine, aside from the treatments,” says Hayes. “Do what you can to find joy through it all — that helped me the most.”
That can mean time with family, connecting with other survivors, finding meaningful hobbies and activities, and anything else that makes you happy and gives you purpose, says Waldman.
And finally, remember that, no matter how bad the statistics look, they don’t decide a certain future.
“The biggest thing that helped me deal with it was something my doctor told me,” says Tedeschi. “He said, ‘you are a statistic of one, and no one is like you.’ Most people thought I wouldn’t survive. The statistics showed that I wouldn’t survive.”
The statistics were wrong.
Diagnosed with stage IV pancreatic cancer in 2012, Tedeschi underwent months of grueling chemotherapy. Now 57, she’s been cancer-free — the official term is NED, or no evidence of disease — for 13.5 years.
“When I got my diagnosis, there was a 1% chance that I would survive for 5 years,” she says, “and I remember saying, well, someone’s got to be in that 1%.
