Understanding Pancreatic Cancer
- Amy Skoutelas, a 35-year-old mother of three from Gilbertsville, Pennsylvania, was diagnosed with stage three pancreatic cancer after persistent abdominal pain. After a second opinion led to an MRI that revealed a small tumor blocking her pancreatic duct, she underwent surgery and chemotherapy—and recently rang the bell marking the end of her treatment.
- Pancreatic cancer is a type of cancer that forms in the pancreas. It can be challenging to treat because symptoms usually don’t present themselves until the cancer has spread or metastasized. Symptoms may include unexplained weight loss, back pain, jaundice, and pain in the abdomen.
- Early-stage pancreatic cancer tumors don’t appear on imaging scans, and people typically don’t experience symptoms until the disease has progressed. The pancreas’ location in the abdomen makes it harder to find tumors. Treatment options for pancreatic cancer may include surgery, radiation, chemotherapy, and targeted therapy.
- Dr. Allyson Ocean, a medical oncologist at Weill Cornell Medical Center, explained that pancreatic cancer is difficult to treat because the cancer cells have a barrier called the stroma, which prevents cancer medications, including chemotherapy and radiation, from targeting and killing cancer cells.
- The SurvivorNet Clinical Trial Finder and websites called Clinicaltrials.gov and PubMed are great resources to use if you’re considering experimental treatment for a disease you or a loved one are battling. These databases can also help you find doctors who specialize in your disease.
“I thought it was trapped gas, but it continued. I kind of panicked because that wasn’t my norm,” Skoutelas, who describes herself as been the healthiest she’s ever been leading up to her diagnosis, told TODAY.com in a recent interview.
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As her discomfort grew worse in the following weeks, she returned to her gastroenterologist. An X-ray ruled out any blockage, and subsequent evaluations again appeared normal, attributing her troubles to common digestive problems.
She insisted to TODAY.com that she “just knew something was not right,” leading her to get another opinion from a different gastroenterologist in April, who thankfully ordered her to get an MRI, which discovered her tumor.
“It was very small, but it was blocking the duct, which is why I was experiencing all of the acid reflux, the indigestion, the diarrhea,” Skoutelas said.
Also recounting her cancer journey on Instagram, Skoutelas said her gastrointestinal issues first arose in January 2025, prompting her to visit the emergency room. After two doctors “dismissed” her symptoms, she credits the third one for ordering an MRI and ultimately finding a 1.7cm mass on her pancreas.
A biopsy then confirmed she had stage 3 pancreatic adenocarcinoma, which MOFFITT Cancer Center describes as, “a type of pancreatic cancer that starts in the ducts of the pancreas” and the most common type of this disease.
“In the pancreas, there is a system of small ducts that come together in the main pancreatic duct. These ducts are responsible for bringing the digestive enzymes that the pancreas produces to the first part of the small intestine (called the duodenum) to aid in digestion,” the cancer center explains.
“As the most common form of pancreatic cancer, pancreatic adenocarcinoma accounts for about 95 percent of all pancreatic malignancies.”
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After being told her treatment plan would entail chemotherapy and surgery, she underwent a procedure on May 23 and rang the bell to commemorate finishing up her treatment on December 2.
Her husband posted a celebratory post, featuring a video of Skoutelas ringing the bell, writing, “I’m not one to wish away the days, but I’m glad these particular days are over. Amy rang the bell today, marking the end of her treatments. 2025 was a trial of the mind, body, and soul. We go onward from here, leaving the darkness as we enter the light.
“Scans as of late show NED (no evidence of disease). Scans and blood will be repeated every 6 months over 5 years. A lot of thanks goes out to everyone thus far. Penn Medicine Cancer Center; Her surgeon, oncologists, nursing staff, etc. You saved her life. The community; Friends, family, coworkers, clients, and even strangers from afar. You got us through with your support in all forms.”
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Skoutelas also expressed gratitude on her Instagram to the doctor who finally identified her tumor—which the other physicians had missed—and ultimately removed it completely, along with half of her pancreas and her entire spleen.
Skoutelas, who was 34 years old at the time of her diagnosis, wrote alongside the footage of her sharing her story, “Fight for yourself .. always,” because if she hadn’t the disease could have progressed and been found much later.
“I’m thanking my team who HEARD me … Had it not been for self advocacy, I would have potentially been inoperable and headed to stage four,” she explained further in her video.
“I want to help others. I hope no one experiences what I have. If you do anything in this life, FIGHT for you and never give up.”
Skoutelas also stated that she now prioritizes expressing daily gratitude to God, whom she credits with saving her life.
RELATED: Can Turning To Faith Help You During A Cancer Journey? Some People, And Studies, Say Yes.
She further shared how thankful she was in a sweet Thanksgiving post, featuring a family photo, writing, “I don’t believe I have powerful enough words to express my gratitude for all this year has taken & given me.”
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“I’m just happy to still be here & it’s a feeling I wish I could share with everyone. It’s profound & just amazing how different life is for me now,” she continued.
“Don’t take anything or anyone for granted. Happy Thanksgiving. Remember HE is the reason for the SEASON.”
“I Had A Talk With God And I Knew I’d Be Okay”
Understanding Pancreatic Cancer
Pancreatic cancer is an aggressive disease that is difficult to detect because symptoms, including jaundice and weight loss, typically present at a later stage in the cancer’s development. In a previous interview with SurvivorNet, Dr. Anirban Maitra, the co-leader of the Pancreatic Cancer Moon Shot at MD Anderson Cancer Center, explains what he typically sees when patients develop this disease.
“Because the pancreas is inside the abdomen often doesn’t have symptoms that would tell you that something is wrong with your pancreas,” he says. “By the time individuals walk into the clinic with symptoms like jaundice, weight loss, back pain or diabetes, it’s often very late in the stage of the disease.”
Detecting Pancreatic Cancer Early Is Crucial
Parents, siblings and children of someone with pancreatic cancer are considered high risk for developing the disease because they are first-degree relatives of the individual. PGVs (pathogenic germline variants) are changes in reproductive cells (sperm or egg) that become part of the DNA in the cells of the offspring. Germline variants are passed from parents to their children, and are associated with increased risks of several cancer types, including pancreatic, ovarian and breast cancers. Germline mutations in ATM, BRCA1, BRCA2, CKDN2A, PALB2, PRSS1, STK11 and TP53 are associated with increased risk of pancreatic cancer.
Jessica Everett, a genetic counselor at NYU Langone’s Perlmutter Cancer Center, encourages people in this category to look into possible screening options.
“If you’re concerned about pancreatic cancer in your family, start by talking to a genetic counselor to learn more about your risk and what options you have,” Everett said.
Additionally, note that up to ten percent of pancreatic cancer cases are caused by inherited genetic syndromes. So, if two or more members of your family have had pancreatic cancer, or if you have pancreatic cysts, it’s worth asking your doctor to check for pancreatic cancer since you’re at high risk.
Progress in Pancreatic Cancer
Progress has been made over the last few years in the world of pancreatic cancer treatments. One clinical trial recently found that the drug Onivyde, in combination with chemotherapy in the so-called Nalirifox regimen, helped patients live longer compared with chemotherapy in previously untreated patients with metastatic pancreatic ductal adenocarcinoma (mPDAC), according to Ipsen, the pharmaceutical company that bought the drug.
“The prognosis for people diagnosed with pancreatic cancer is extremely poor and we plan to submit these new findings to the regulatory authority as, if approved, we believe this regimen could offer up an important new treatment option for people living with an aggressive and hard-to-treat cancer,” Howard Mayer, Executive Vice President and Head of Research and Development for Ipsen, said. “We thank the patients who participated in the study, their families and their healthcare teams.”
The drug is currently approved in the U.S., Europe, and Asia in combination with fluorouracil and leucovorin as a treatment for mPDAC after disease progression and following gemcitabine-based therapy.
Expert Resources On Pancreatic Cancer
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Another example of progress being made comes in the form of immunotherapy, a type of cancer treatment that uses your own immune system to fight cancer.
“Up until now, immunotherapy hasn’t had a big role,” Dr. Allyson Ocean, a medical oncologist at Weill Cornell Medical Center, previously told SurvivorNet.
Dr. Allyson Ocean explains why pancreatic cancer is so hard to treat.
A clinical trial led by researchers at the Perelman School of Medicine at the University of Pennsylvania, and sponsored by the Parker Institute for Cancer Immunotherapy, found “combination of chemotherapy with an immunotherapy meant to unleash the anticancer capacity of the immune system was effective against one of the hardest targets in cancer care, pancreatic cancer,” said Penn Medicine.
“The researchers found that in 34 patients with advanced pancreatic cancer randomized to receive the immunotherapy nivolumab with two chemotherapy drugs, nab-paclitaxel and gemcitabine, had a one-year survival rate of 57.7 percent, significantly greater than the historical average of 35 percent with chemotherapy alone,” the institution said.
Dr. Benjamin Musher, the director of medical oncology at the Dan L Duncan Comprehensive Cancer at Baylor St. Luke’s Medical Center, recently said there were currently multiple “home-grown clinical trials testing novel immunotherapies in all stages of pancreatic cancer studies underway at Baylor St. Luke’s.” But only about 5 percent of patients with pancreatic cancer participate in such studies.
“We know that we are not going to improve outcomes without more patients enrolling,” Musher said.
In addition, there are immunotherapy clinical trial innovations being made to allow for multiple immunotherapeutic approaches to be tested and compared to one or several standard-of-care options within trials. In other words, “investigational treatments can be added or dropped from the trial over time, depending on preclinical and clinical evidence.”
“We’re encouraged by the trend toward more innovative clinical trial designs to improve the drug development process and ultimately lead to better patient outcomes,” PanCAN Chief Science Officer Lynn Matrisian said in a recent article from the Pancreatic Cancer Action Network.
Clinical trials, in general, are research studies that compare the most effective known treatment for a specific type or stage of a disease with a new approach.
Dr. Beth Karlan, a gynecologic oncologist with UCLA Health, previously told SurvivorNet that clinical trials can play an important role for some patients’ treatment, but they also serve a larger purpose.
“Clinical trials hopefully can benefit you, but it’s also providing very, very vital information to the whole scientific community about the effectiveness of these treatments,” Dr. Karlan said. “We need everyone to be partners with us if we’re ever going to truly cure cancer or prevent people from having to die from cancer.”
That being said, there is no guarantee you’ll receive more effective treatment than the standard of care, and clinical trials certainly aren’t right for everyone. You should always talk with your doctor(s) before getting involved in one. Some risks to consider are:
- The risk of harm and/or side effects due to experimental treatments
- Researchers may be unaware of some potential side effects for experimental treatments
- The treatment may not work for you, even if it has worked for others
But if you’ve already decided that a clinical trial is right for you or you’re just beginning to explore your treatment options, you should know that SurvivorNet has a tool for you. The SurvivorNet Clinical Trial Finder: an A.I. driven tool for patients to find clinical trial options for treatment.
The tool is built on top of clinicaltrials.gov, a database maintained by the U.S. government that compiles privately and publicly funded clinical trials conducted around the world, and gives access to more than 100,000+ individual clinical trials, updated daily.
“Clinical trials are critical to the development of new therapies, and as we live through this extraordinary revolution in genomics, immunotherapy and targeted therapy, it’s clear that one of the most pressing needs for patients, clinical trials sponsors, and researchers is simply a better way to find patients,” SurvivorNet CEO Steve Alperin said.
“Even one percent more people successfully enrolled in clinical trials can change the world.”
Questions for Your Doctor
If you are facing a pancreatic cancer diagnosis, you may have questions but are unsure how to get the answers you need. SurvivorNet suggests asking your doctor the following to kickstart your journey to more solid answers.
- What type of pancreatic cancer do I have?
- Has my cancer spread beyond my pancreas? If so, where has it spread, and what is the stage of the disease?
- What is my prognosis?
- What are my treatment options?
- What side effects should I expect after undergoing treatment?
- Will insurance cover my recommended treatment?
Pushing For A Correct Diagnosis
When it comes to your health, be a little pushy. You know your body better than anyone else. When you see a doctor for a problem, don’t hesitate to make sure that your question is fully answered and that you are comfortable with the plan moving forward. From a doctor’s perspective, every problem should have a diagnosis, a treatment, a plan for follow-up, and a plan for what happens next if the treatment doesn’t work.
As a patient, if you don’t feel like each of these four things has been accomplished, just ask! Even if it requires multiple visits or seeing additional providers for a second opinion, always be your own advocate.
The Importance of Being Your Own Advocate
Dr. Zuri Murrell, director of the Cedars-Sinai Colorectal Cancer Center, previously told SurvivorNet that healthcare guidelines are meant to do the right thing for the largest number of people while using the fewest resources.
“The truth is you have to be in tune with your body, and you realize that you are not the statistic,” he said.
Dr. Murrell told SurvivorNet that not every patient will “fit into the mold,” so it’s important to educate yourself and be your own health care advocate.
“Every appointment you leave as a patient, there should be a plan for what the doc is going to do for you, and if that doesn’t work, what the next plan is,” Dr. Murrell advised. “And I think that that’s totally fair. And me as a health professional that’s what I do for all of my patients.”
Contributing: SurvivorNet Staff
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