How do patients cope with pancreatitis and pancreatic cancer. What are the symptoms that lead to diagnosis. How do treatments impact patients’ lives. What can we learn from personal stories of pancreatitis survivors.

Peter Ball’s Battle: Pancreatic Cancer Recurrence Amidst a Global Pandemic

Peter Ball’s story is one of incredible resilience in the face of multiple challenges. As the COVID-19 pandemic ravaged New York City in March 2020, Peter found himself in a harrowing situation. His wife underwent heart valve replacement surgery, only to be hospitalized a week later with a life-threatening infection. For two grueling months, Peter remained by her side, hoping for her recovery.

Just as his wife began to recover, Peter received devastating news in September: his pancreatic cancer had returned. This recurrence came at a time when the healthcare system was already strained due to the ongoing pandemic, adding another layer of complexity to his treatment journey.

Lessons from Peter’s Experience

• The importance of emotional support during health crises
• The challenges of managing multiple health issues simultaneously
• The impact of external factors (like a pandemic) on cancer treatment

Ryan Finlay: When Pancreatitis Outpains Combat Injuries

Ryan Finlay’s background as a combat veteran and NYPD officer speaks volumes about his pain tolerance. However, even his experiences in active duty, including undergoing neck surgery without anesthesia, paled in comparison to the agony of pancreatitis.

Ryan’s story highlights the often-underestimated severity of pancreatitis pain. For a man accustomed to extreme physical challenges, the intensity of pancreatitis-induced discomfort came as a shock.

Understanding Pancreatitis Pain

Why is pancreatitis pain so severe? The pancreas, when inflamed, releases digestive enzymes that irritate and damage its own tissues. This self-destructive process results in intense abdominal pain that can radiate to the back. The pain is often described as constant and worsens after eating.

Tony Rafaniello: From Dream Vacation to Medical Emergency

Tony Rafaniello’s story begins with anticipation for a dream Italian vacation. As a retired assistant principal and basketball coach, Tony and his wife Dale were eagerly preparing for a trip to Italy and a cruise around Sicily. However, their plans were abruptly derailed just two days before departure when Tony woke up with excruciating stomach pain.

Tony’s wife, a nurse, recognized the severity of his symptoms and rushed him to the hospital. In the emergency room, Tony’s condition rapidly deteriorated. After receiving pain medication, he suddenly lost consciousness and remained in that state for ten days, requiring ventilator support to breathe.

Key Takeaways from Tony’s Experience

1. The sudden onset of pancreatitis symptoms
2. The potential for rapid deterioration in severe cases
3. The importance of immediate medical attention

Sylvia George: From Back Pain to Pancreatic Cancer Diagnosis

Sylvia George’s journey with pancreatic cancer began with an seemingly unrelated symptom: unexplained back pain. This vague discomfort prompted her to seek medical attention, leading to a series of diagnostic tests that would change her life.

A CT scan revealed a suspicious spot on Sylvia’s pancreas, and a subsequent biopsy confirmed the diagnosis of advanced localized pancreatic cancer in May 2017. Sylvia’s story underscores the importance of paying attention to persistent, unexplained symptoms and seeking thorough medical evaluation.

Early Signs of Pancreatic Cancer

What are some early warning signs of pancreatic cancer? While symptoms can be subtle and easily attributed to other conditions, some potential red flags include:

• Unexplained weight loss
• Abdominal or back pain
• Loss of appetite
• Changes in stool color or consistency
• New-onset diabetes in older adults

Florentino Rosa: A Childhood of Misdiagnoses and Persistent Pain

Florentino Rosa’s battle with pancreatitis began in childhood, marked by years of relentless abdominal pain and frustrating misdiagnoses. Despite countless doctor visits, the true cause of Florentino’s symptoms remained elusive, leading to a series of ineffective and unnecessary treatments.

This prolonged journey to an accurate diagnosis highlights the challenges in identifying pancreatic conditions, especially in younger patients where such issues are less common. Florentino’s experience emphasizes the importance of persistence in seeking answers and the need for increased awareness of pancreatic disorders across all age groups.

Challenges in Diagnosing Pancreatic Conditions

Why can pancreatic conditions be difficult to diagnose? Several factors contribute to this challenge:

1. Symptom overlap with other gastrointestinal disorders
2. The deep location of the pancreas within the abdomen
3. Variability in symptom presentation among patients
4. Limited awareness of pancreatic conditions, especially in younger individuals

Lucien Zito: Navigating a Devastating Diagnosis

Lucien Zito’s story began in April 2007 when symptoms of dark urine and a rash led him to consult a surgeon. The subsequent diagnosis was devastating: a mass on his pancreas. Even more crushing was the surgeon’s initial assessment that the cancer was inoperable.

This news plunged the Zito family into a state of confusion and hopelessness. However, Lucien’s journey didn’t end with this initial prognosis. His story serves as a reminder of the importance of seeking second opinions and exploring all available treatment options.

Coping with a Pancreatic Cancer Diagnosis

How can patients and families cope with a pancreatic cancer diagnosis? Here are some strategies:

• Seek information from reputable sources to understand the condition better
• Don’t hesitate to get second opinions from specialists
• Explore clinical trials and emerging treatment options
• Connect with support groups and patient advocacy organizations
• Consider counseling or therapy to manage emotional impacts

Keni Torres: A Young Life Upended by Pancreatitis

Keni Torres’ life took an unexpected turn on October 9th, 2016. At just 29 years old, with no significant medical history besides childhood asthma, Keni found herself facing a diagnosis that would dramatically alter her life trajectory.

Her story highlights that pancreatitis can affect individuals of all ages, even those without typical risk factors. It also underscores the sudden and life-changing nature of pancreatic conditions.

Pancreatitis in Young Adults

What causes pancreatitis in younger individuals? While the exact cause can vary, some potential factors include:

• Genetic predisposition
• Autoimmune disorders
• Anatomical abnormalities of the pancreas
• Certain medications
• High triglyceride levels

Keni’s experience serves as a reminder for healthcare providers to consider pancreatic conditions even in younger patients presenting with unexplained abdominal symptoms.

Cody Artist: Finding Relief Through Innovative Treatment

Cody Artist endured years of escalating pain before finding hope through an innovative procedure. His journey led him to Dr. Beth Schrope, Director of NYP/Columbia’s Autologous Islet Cell Transplantation program and the first to perform this operation in the New York area.

The islet cell transplant procedure finally brought an end to Cody’s painful attacks, effectively giving him his life back. This groundbreaking treatment offers hope for patients with chronic pancreatitis who have exhausted other treatment options.

Understanding Islet Cell Transplantation

How does autologous islet cell transplantation work? The procedure involves:

1. Removing the patient’s diseased pancreas
2. Isolating insulin-producing islet cells from the removed pancreas
3. Transplanting these cells back into the patient’s liver
4. The transplanted cells continue to produce insulin, helping to prevent diabetes

This innovative approach not only addresses the pain of chronic pancreatitis but also helps preserve the crucial insulin-producing function of the pancreas.

Bob Tepé: Confronting Cancer’s Life-Altering Diagnosis

Bob Tepé’s story reminds us of the profound impact a cancer diagnosis can have on one’s life. He poignantly describes the moment of diagnosis as potentially just as life-crushing as having life snatched away in an instant.

Bob’s experience highlights the emotional and psychological toll of a pancreatic cancer diagnosis. Even when patients suspect something might be wrong, the official confirmation from a doctor can still be a devastating blow.

Psychological Impact of Cancer Diagnosis

How can patients cope with the emotional aftermath of a cancer diagnosis? Some strategies include:

• Allowing oneself time to process the news
• Seeking support from loved ones and professional counselors
• Focusing on aspects of life that can be controlled
• Staying informed about the condition and treatment options
• Connecting with other patients who have similar experiences

David Paffenroth: The Subtle Signs of Pancreatic Cancer

David Paffenroth’s journey with pancreatic cancer began with subtle changes that were easy to overlook. In the fall of 2014, he started losing weight, which he initially attributed to his recent Type 2 Diabetes diagnosis. However, as additional symptoms emerged – pain under his rib cage, continued weight loss, and changes in his stools – David and his wife Wendy knew it was time to seek answers.

Their path to diagnosis involved consultations with multiple doctors before finally arriving at the Pancreas Center, where David received an accurate diagnosis and successful treatment for his pancreatic cancer.

Recognizing Pancreatic Cancer Symptoms

What subtle signs might indicate pancreatic cancer? While these symptoms can be associated with various conditions, potential indicators include:

• Unexplained weight loss
• Abdominal or back pain
• Changes in stool appearance or frequency
• Yellowing of the skin or eyes (jaundice)
• New-onset diabetes or worsening of existing diabetes
• Loss of appetite or feeling full quickly

David’s experience underscores the importance of persistence in seeking medical answers when symptoms persist or worsen over time.

Jennifer Alexander: A Life of Resilience Through Multiple Cancer Battles

Jennifer Alexander’s story is one of remarkable resilience in the face of multiple cancer diagnoses. At the age of 30, while still living in her native Venezuela, Jennifer was diagnosed with ovarian cancer. A hysterectomy saved her life, marking the beginning of her journey as a cancer survivor.

Now 63 years old and living in the United States since 1991, Jennifer’s experience showcases the long-term impact of cancer survivorship and the importance of ongoing health vigilance for cancer survivors.

Long-Term Health Considerations for Cancer Survivors

What health considerations should cancer survivors keep in mind? Some key aspects include:

1. Regular follow-up care and screenings
2. Awareness of potential long-term effects of cancer treatments
3. Maintaining a healthy lifestyle to reduce the risk of cancer recurrence
4. Managing the emotional and psychological impacts of cancer survivorship
5. Being vigilant about new or unusual symptoms

Sarah Bennett: Ready for the Next Round in Her Cancer Fight

Sarah Bennett’s powerful statement, “My boxing gloves are laced up and I’m ready for the next round,” encapsulates the fighting spirit often seen in cancer patients. Her metaphor of cancer treatment as a boxing match vividly illustrates the grueling nature of the battle against this disease.

Sarah’s attitude demonstrates the importance of mental resilience and a positive outlook in facing the challenges of cancer treatment. Her story serves as an inspiration to other patients, showing that it’s possible to maintain determination and hope even in the face of a difficult diagnosis.

Building Resilience During Cancer Treatment

How can patients build and maintain resilience during cancer treatment? Some strategies include:

• Setting small, achievable goals
• Practicing mindfulness and stress-reduction techniques
• Maintaining social connections and support systems
• Engaging in physical activity as permitted by their medical team
• Celebrating small victories and milestones in treatment
• Finding ways to maintain a sense of normalcy and routine

Sarah’s boxing metaphor also highlights the importance of viewing cancer treatment as a series of manageable rounds rather than an overwhelming whole, helping patients focus on getting through one day or one treatment at a time.

The Role of Patient Stories in Pancreatic Health Awareness

These personal narratives of individuals facing pancreatic cancer and pancreatitis serve a crucial role in raising awareness about these conditions. By sharing their experiences, these patients provide valuable insights into the early signs of pancreatic diseases, the challenges of diagnosis, and the realities of living with and fighting these conditions.

Patient stories also help to humanize these diseases, moving beyond statistics and medical jargon to show the real impact on individuals and families. They can inspire hope in newly diagnosed patients, provide comfort to those struggling with their diagnosis, and motivate others to pay attention to their health and seek medical attention for concerning symptoms.

Impact of Patient Stories

How do patient stories contribute to pancreatic health awareness? They serve several important functions:

• Educating the public about symptoms and risk factors
• Encouraging early detection and prompt medical consultation
• Providing emotional support and reducing feelings of isolation for patients
• Inspiring hope by showcasing survival stories and treatment advancements
• Motivating funding and support for pancreatic disease research

By sharing their journeys, these individuals become powerful advocates for pancreatic health, potentially saving lives through increased awareness and earlier detection of pancreatic conditions.

Patient Stories: The Pancreas Center

Stories of Hope: Peter Ball

Just as the COVID-19 pandemic hit New York City in March 2020, his wife had heart valve replacement surgery and was hospitalized a week later with a life-threatening infection. Peter stayed by her bedside, praying for her recovery. She finally bounced back after two long months, but then in September, he found out that his pancreatic cancer had recurred. Read more here »

Stories of Hope: Ryan Finlay

Ryan is a tough guy—a combat veteran and an NYPD cop. Once, on active duty, he had to have neck surgery without anesthesia. But, he says, that pain paled compared to his pancreatitis. Read more here »

Stories of Hope: Tony Rafaniello

May of 2016 was an exciting time for Tony Rafaniello. Now retired as an assistant principal and basketball coach, Tony and his wife Dale were preparing for a trip to Italy and a cruise around the Isle of Sicily. His mind often drifted to all he would do, see and eat in the weeks ahead. Two days before departure, he woke up with terrible stomach pain. “I was nauseous and throwing up,” Tony says. “My wife’s a nurse at a New Jersey hospital, so we drove there right away.” In the ER, Tony was given some pain medication. Then, suddenly, he passed out. For the next ten days, he was unconscious, breathing with the aid of a ventilator. Read more here »

Stories of Hope: Sylvia George

Sylvia George was first diagnosed with advanced localized pancreatic cancer in May of 2017. It started with unexplained back pain, a vague symptom that led Sylvia to make an appointment with her GP. After a CT scan found a spot on her pancreas, the biopsy then confirmed the diagnosis. Read more here »

Stories of Hope: Florentino Rosa

Since I was a child, I remember my parents bringing me to a series of doctors to try and find out the cause of my relentless abdominal pain. Unfortunately, no doctor could accurately identify the condition that was causing my symptoms, thus prescribing me wrong and unnecessary medications. This situation went on for years. Read more here »

Stories of Hope: Lucien Zito

In April 2007, after symptoms of dark urine and a rash, Lucien Zito visited a surgeon who determined his symptoms were caused by a mass on his pancreas. This information was devastating to hear but even more devastating was the doctor’s conclusion that his cancer was inoperable. Thoughts of confusion and hopelessness overtook the Zito family.  Read more here »

Stories of Hope: Keni Torres

My story begins on October 9th, 2016. Born and raised in Brooklyn, New York, I had lived 29 years without any significant medical history besides a bout of childhood asthma.  Read more here »

Islet Cell Transplant Ends Chronic Pain

Cody Artist went through years of escalating pain before he met Beth Schrope, MD, PhD. Director of NYP/Columbia’s Autologous Islet Cell Transplantation program, and the first to perform this operation in the New York area. This procedure finally ended his attacks and gave him back his life.  Read more here »

Stories of Hope: Bob Tepé

Life can be snatched from you in an instant. A more diabolical way is to be told by your doctor that you have cancer. Is it just as much a life-crushing moment if you had an idea something was wrong and your doctor’s confirmation somehow gave it bonafide legitimacy? Read more here »

Stories of Hope: Richard Santangelo

See Richard Santangelo’s video from 2015. Read his Story of Hope for an update!

Stories of Hope: David Paffenroth

In the fall of 2014, Dave began to lose weight. Being diagnosed a few years earlier with Diabetes II, at first he thought it was part of the disease. However, other symptoms started to appear — pain under his rib cage, losing more weight, change in stools, etc. An appointment to the primary doctor in October had Dave and his wife, Wendy, asking a lot of questions. After seeing doctor after doctor, Dave and Wendy finally arrived at the Pancreas Center, for successful diagnosis and treatment of Dave’s pancreatic cancer. Read more here »

Stories of Hope: Jennifer Alexander

At age 30, I was diagnosed with ovarian cancer in my native country and a hysterectomy saved my life. I am now a 63-year-old woman who migrated from Venezuela in 1991. Read more here »

Stories of Hope: Geri Lipschitz

A Note from The Pancreas Center: We would like to express our wholehearted thanks for all the great work Geri has done for our patients and our program. She has consistently shown herself to be a loyal and hard working, integral part of the team. She has made a remarkable contribution to the lives of those we have cared for at The Pancreas Center. Geri, you will be sorely missed and we wish you a long, happy and healthy retirement! Read more here »

Stories of Hope: Sarah Bennett

My boxing gloves are laced up and I’m ready for the next round. Read more here »

Stories of Hope: Suzanne Musich

Michael told me that I would have to fight for my life and that this was not going to be easy. Read more here »

Stories of Hope: Michael Menashi

How the worst day of his life led to one patient’s rebirth. Read more here »

Stories of Hope: Adam Abramowitz

Adam’s eyes were darting around the room observantly, periodically stopping as if something in particular had piqued his interest. It had been only a minute since I first met him, and I could already tell his mind worked quickly – especially for an 11-year old. Approximately two weeks earlier, I had received a bundle of letters and drawings in the mail from Adam. Read more here »

Stories of Hope: Adam Kaplan

I am a clinical psychologist on staff at New York-Presbyterian Hospital, I am a certified psychoanalyst, I am well versed in behavioral techniques for addressing anxiety, and I was completely unprepared when I was diagnosed with pancreatic cancer in February of 2014. All of my training and knowledge seemed to vanish in an instant and I felt myself falling through space. I was terrified. Read more here »

Stories of Hope: Tammie Feldman

For seven years of my life, I lived in a tortured cycle of heading into the hospital, staying at the hospital, and heading home from the hospital with the disheartening diagnosis of chronic pancreatitis. For anyone with chronic pancreatitis or knows of anyone with chronic pancreatitis, you know what a painful debilitating disease this is and how it changes every aspect of your life and the lives of those you love. Read more here »

Stories of Hope: Carole DeNettis

Carole DeNettis had a small tumor at the head of her pancreas that was indeed pancreatic cancer. Dr. Chabot and his team were eager to performed the Whipple procedure. She felt totally confident that she was going to win this battle against pancreatic cancer. She is now honored to have been given the title “SURVIVOR.” Read more here »

Stories of Hope: Howard Ebert’s Story

Howard Ebert is a pancreatic cancer survivor. After being diagnosed and treated several years ago, Howard is now cancer free and leading a full and healthy life. 

Stories of Hope: Jan Hilgeman’s Story

Stage IV.” As always, Dr. Sherman didn’t mince words. I was 51 years old and already several weeks into chemotherapy treatments for pancreatic cancer when I finally asked him exactly what stage my cancer was. Of course I knew the diagnosis — and that it wasn’t all that early, but I certainly didn’t expect to hear it hadn’t been caught as early as I had hoped and assumed. I had never had any health issues at all — ever. My grandparents lived well into their 80s and 90s and my parents are in their 80s now and for the most part healthy and vibrant. And really I felt fine…it all just seemed so implausible and surreal. Read more here »

Stories of Hope: Alyson’s Story

As an infant, thirty-year-old Alyson Peluso, underwent surgery to remove a choleductal cyst in her bile duct. Her lifelong digestive problems came to a crisis when she reached her mid-20s, leading her to the Pancreas Center, where a precancerous pancreatic cyst was removed. Her experiences inspired Alyson to found the P.E.A.C.E Fund, a support organization for patients with pancreatic diseases and their families. Read more here »

• Read about Alyson’s journey to overcome pancreatitis and help others;
• Read Alyson’s September 2011 update Paddling for Pancreatic Cancer.
• Alyson’s January 2014 update, From patient to PA

Stories of Hope: Michael Weisz

By Tuly Weisz

Although I am not usually one to share intimate details in a public setting, I feel that it is important to be able to share a message of hope and optimism. The day after my sister’s wedding in Jerusalem, my sister told my father that he didn’t look well, to which he replied with a joke about feeling sick from paying the wedding expenses. However, we all then noticed that my sister was right. Once home, my Dad scheduled a doctor’s appointment, which led to an exam, which led to a test, which led to the terrible diagnosis: pancreatic cancer. Fast forward to chemotherapy followed by surgery at NewYork-Presbyterian/Columbia with Dr. Chabot. Read more here »

Stories of Hope: Lawrence Rudnick

You CAN beat pancreatic cancer, but you need a lot of help. I was at JFK Hospital in Edison, New Jersey in November 2011 waiting to have my gall bladder removed. During a pre-op endoscopic procedure, Dr. David Rosenheck saw a tumor on my pancreas. He and his partner, Dr. Steven Hodes as well as a surgeon all said that I HAD to see Dr. John Chabot at NewYork-Presbyterian Hospital/Columbia University Medical Center. These doctors, none of whom I knew, contacted Dr. Chabot on my behalf, and I was transferred several days later. My wife Beth and I met with Dr. Chabot and Dr. William Sherman, who would be my oncologist. Dr. Sherman was running a clinical trial and both doctors invited me to join. This was the best decision I have made in my life other than asking Beth to marry me. Read more here »

Stories of Hope: Robert DiChiara

In October 2012 at the age of 55 Robert DiChiara was picking pumpkins with his son when he developed abdominal pain that continued to worsen. A visit to his physician revealed that he had a tumor at the head of the pancreas and he was diagnosed with stage 3 adenocarinoma. Robert was told that he had roughly four months to live, so he took action immediately. Read more here »

Stories of Hope: Robert Lawton

In February of 1999 Robert Lawton began having gastric discomfort accompanied by itching. Within the next few days he developed severe jaundice and suddenly became very ill. After visiting his primary care physician, a CT of his abdomen revealed a lesion at the head of the pancreas and, ultimately, the diagnosis of adenocarcinoma. It was at this point that Robert came to Columbia University Medical Center to see Dr. John Chabot, the director of the Pancreas Center. Robert’s pancreatic cancer was caught early on while the growth was still small, making him an excellent candidate for the Whipple procedure. After a successful Whipple, Robert was cured of pancreatic cancer, but his story does not end there. Read more here »

Stories of Hope: Kay E.

Friedlander

It was the summer of 2008, I was 64 and we had just purchased a tiny lake cottage on Kayuta Lake between Ithaca and Watkins Glen, NY. I was beleaguered by consistent diarrhea and had the water rechecked to see if the well water was contaminated which was not the case. A colonoscopy in the Fall showed nothing and I was told to eat more fiber. That Winter I developed floating clay colored stools. An internet search found two possible explanations — Celiac Disease and Pancreatic Cancer. My grandmother had died of the latter but I hoped for the former. Since I had a total thyroidectomy 4 years earlier for thyroid cancer I deluded myself that I couldn’t be unfortunate enough to have another cancer and pancreatic cancer at that. Read more here »

Stories of Hope: John Whitley

My name is John Whitley, and I have lived in Nyack for 25 years.

In January 2011, I got sick, then rapidly sicker. At first they thought I had a gall bladder problem, but when I didn’t improve after gall bladder removal, I was referred to New York Presbyterian Hospital. Many, many tests finally revealed that I was in the early stages of pancreatic cancer. Read more here »

Read John’s 2015 update.

Stories of Hope: Regina Haimer

It all started with my yearly routine visit to my OB/GYN in May of 2012. After my check-up, which was just fine, my doctor came back into the room and mentioned that there was a microscopic trace of blood in my urine. I then visited a urologist, who performed tests that found a 12 cm mass in my abdominal wall. Read more here »

Stories of Hope: David Mankuta

After several weeks of abdominal pain last summer, I visited my primary care physician. He ran a few tests, suspecting that my pain may have been related to previous issues, and I went home. By the time I went back two weeks later, I had developed some back pain. He promptly focused on the pancreas since it was located between the stomach and the spine where my pain was concentrated. He ordered a CT scan which showed “something” on the pancreas. Two MRI’s later, my doctor, together with a gastroenterologist, showed us a mass at the head of the pancreas. Knowing that pancreatic cancer is a killer, I was overcome with panic. Read more here »

Stories of Hope: Karla Scherne-Hugerth

Karla’s story began in April 2002, when she began experiencing severe backaches that continued to worsen. After learning on June 5, 2002 that she had cancer, she arranged an appointment at Columbia University Medical Center with Dr. John Chabot, Director of the Pancreas Center. Dr. Chabot felt that her only option was the Whipple surgery. After a successful surgery she was informed she had 4/5 lymph node involvement and thus needed to undergo both radiation and chemotherapy. Karla was prescribed Gemzar and Taxotere. Since then, none of her scans or blood work has shown any visible signs of active disease. Read more here »

Stories of Hope: Rokshana Husain

When she made a trip to her local emergency room for a heart problem in 2009, Rokshana Husain could not have foreseen the complex journey that visit would initiate. Not satisfied with her initial diagnosis, Rokshana sought a second opinion at NewYork-Presbyterian/Columbia, which proved to be a life-saving decision. Read more here »

Stories of Hope: Ian Bernard

At only 13 years old, Ian Bernard made a selfless contribution to pancreatic cancer research in honor of his late grandfather. Read more here »

Profile in Compassion: Sue Mirza Carries Husband’s Legacy, Potentially Transforming the Treatment of Pancreatic Cancer

On first glance, the story may appear cliché; a spouse dies, and the surviving spouse gives to a charitable cause, hoping to confer some measure of permanence to his or her loved one’s memory. Repeated in infinite variations, the uplifting closure softens just a little bit of the survivors’ sadness and pain, and makes a small contribution that lasts a little while before fading. Read more here »

Stories of Hope: Bill Gillmore’s Story

In March 2009, Bill was diagnosed with advanced pancreatic cancer, which was declared inoperable because it involved the vessels surrounding his pancreas. He underwent nine weeks of chemotherapy, and the pancreas tumor had shrunk to half its original size, but after a brief rest it began growing again. In despair, Bill came to the Pancreas Center after learning its team performs surgery to remove inoperable pancreatic tumors.Read more here »

Stories of Hope: Alia’s Story

Alia suffered from a a sensitive digestive system that was originally treated as acid reflux. In 2009, as a 19-year-old college freshman, she was diagnosed with a benign tumor in the head of her pancreas. She underwent a Whipple procedure at the Pancreas Center, and part of her pancreas was removed. Read more here »

From Patient to Activist: Ralph Cheney Spreads His Story of Hope to Others

After Ralph Cheney was treated for gallstones and pancreatitis at his local hospital in Monticello, New York, a CT scan revealed a shadow on his pancreas. His doctor suggested waiting six months and repeating the CT scan after the pancreatitis cleared up. Ralph’s wife, Mariann, thought otherwise, and after additional research, the couple came to The Pancreas Center for successful diagnosis and treatment of Ralph’s pancreatic cancer. Five years later, Ralph is a survivor who hopes his story serves as inspiration for others battling pancreatic cancer.”

UPDATE! Ralph and Mariann Cheney Receive the 2015 Surgery of the Alimentary Tract (SSAT) Public Service Award.

Persistence Pays off for Lucien Zito and His Family

For Lucien Zito, the process of finding appropriate treatment for his pancreatic cancer was a strenuous and protracted ordeal, adding to the stress of the diagnosis. Fortunately for this energetic 65-year-old former real estate developer, he was able to draw upon a loving and supportive family and substantial inner resources for support. Read more here »

Betsy Hilfiger’s Close Call: An Unexpected Pancreatectomy

Betsy Hilfiger, fashion designer Tommy Hilfiger’s sister, never had reason to believe she was at risk for pancreatic cancer. Trained as a nurse, she was well aware of the illness and its known risk factors–smoking and heredity among others. The Hilfigers had some cancer in their family, but none of the cancer syndromes associated with pancreatic cancer or pancreatic cancer itself. But a routine battery of bloodwork showing abnormalities in her liver enzymes led Betsy to discover she pancreatic mucus cell cysts. While initially benign, if left alone they almost always become malignant. Read more here »

Pancreatitis/Islet Tx Patient Stories | Dr. Piotr Witkowski

Patients with chronic pancreatitis suffer for many years, often since childhood from severe recurrent and eventually chronic abdominal pain without a proper diagnosis. First, they have their gallbladder removed without relief.  Then, they have several, sometimes over 10-20 endoscopies over the years with stent placements and exchanges with temporary or no improvement. They look for help in local Emergency Departments where they become known and labeled as “drug seekers”.  Indeed, opioid medications are the last resort treatment for those patients and it may take many years until they are properly diagnosed and treated. Avoiding fatty products in the diet, with enzymatic supplementation may again temporarily calm the symptoms. with eventual recurrence.

Very often, the disease and inflammation in the pancreas are driven by the known genetic mutation in the pancreatic tissue, in other cases by anatomical variant of pancreatic duct (pancreas divisum) and in some cases by alcohol abuse in combination with smoking. 

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Once all medical, endoscopic, and surgical interventions fail, excision of the pancreas remains the last therapeutic option to treat the debilitating abdominal pain. 

The pancreas is the only source of insulin in the human body so, after it’s excision,the patient becomes diabetic and requires insulin injections. 

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After the surgery, acute and chronic pain are usually gone which allows patients to finally enjoy their normal life activities. Quality of life is improved despite the burden of dealing with blood glucose checks and frequent insulin injections.   

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In few selected centers like ours, once the pancreas is excised, it is taken to our laboratory for islet isolation. Pancreatic islets (group of cells secreting insulin) are transplanted back into the patients liver. Having those islets, improves the blood glucose control with the insulin that is produced.

The more islets we are able to retrieve from the patient’s own chronically inflamed pancreas, the higher chance for a patient to require no or minimal amount of insulin. The longer the surgery is delayed despite severe symptoms, the less islets isolated and glucose control is more challenging with need for higher dose of insulin.

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Statistically, patients that undergo an excision of the pancreas and islet autotransplantation:

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             1/3* have a chance to be insulin free (no need for insulin)*,

             1/3  will need low doses of insulin,

             1/3 will need high doses of insulin.

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* Note: Physical exercise, healthy low sugar diet, and low body weight increase the chance for a life without insulin.

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   . ..I have had attacks of very excruciating belly pain as far back as I can remember, as a child, every few years. First physicians thought, I was faking it, or that I was crazy. When it happened more often, one of the physicians accused my single mom of abusing me, as a cause of my painful complaints. Thank God, that social services thought differently and did not give me to a foster family or adoption. When I was a teenager, I was accused of being a drug addict looking for opioids. 

Later on, I had my gallbladder removed and gastroenterologist placed sever plastic stents in my pancreas exchanging them every few weeks, but eventually it stopped working and the pain was killing me despite that. Being a young adult, I was miserable, living in constant fear that the pain may come or it won’t go away and that terrible roughing up and loose stinky stools. I ended up with a feeding tube in my nose as I could not eat regular food.  

Actually, I remember that I could eat tons of ice-cream without pain so soon after, I became chubby. I was depressed, no social life, limited friends, family was close but I was on Prozac anyway. I also found out that one of my uncles had a similar disease as me and he could not handle it anymore and took his life at the age of 35.  My grandma was struggling all her life and she died with pancreatic cancer.

Towards the end everyday, I  was taking pain killers, pills for my stool and was depressed with no hope for my life… 

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….and below is the rest of patient  stories ….after excision of the pancreas and 

after islet autotransplantation!  

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Survival at 10 years after surgery for chronic pancreatitis was “much lower” than expected

Among 493 patients who underwent surgery for chronic pancreatitis, 1-year survival after surgery was 95.5%.

After 5 years, this figure was 85%. But by the 10-year milestone, survival had dropped to 63.5%, a new study found.

This “much lower” long-term survival means there is a “need for more careful follow-up after surgery,” the American College of Surgeons said in a press release on the results.

According to researchers, persistent smoking or opioid use after surgery was associated with increased mortality. The results of the study were
published in Journal of the American College of Surgeons.

Survival tended to be worse when chronic pancreatitis was caused by alcohol or smoking.

Patients with chronic pancreatitis experience severe abdominal pain and about 40% undergo surgery to remove all or part of the pancreas. According to the researchers, few studies have looked at outcomes after 5 years of surgery.

The authors analyzed data from patients who underwent surgery at their institution between 2000 and 2020. Procedures included total pancreatectomy (48.5%), duodenal head resection and/or drainage (21.7%), pancreaticoduodenectomy (16.2%), and distal pancreatectomy (12.8%).

The cause of chronic pancreatitis was unknown in 41.8% of cases. Known causes included alcohol use (28% of cases) and genetic polymorphisms (10%).

Mean age of patients was 44. 8 years; 165 died during the study period. The median age at death was 50.6 years. The most common causes of death were infections (16.4%), cardiovascular disease (12.7%), complications of diabetes (10.9%), substance abuse (9.7%), and progressive chronic pancreatitis or underdevelopment ( 7.9%).

According to the investigators, the majority of patients, 73%, did not use opioids during long-term follow-up. Chronic use of painkillers was associated with significantly worse overall survival (hazard ratio 3.91; 95% CI 2.45 – 6.24), the investigators report.

Approximately 59% of patients were diabetic and insulin dependent.

“After surgery, we as surgeons expect to return these patients to their normal lives,” the study authors said. But the study showed that “a significant proportion of these patients die within 10 years after surgery.”

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“Eat and drink non-stop”

What do all-inclusive holidays and pancreatitis have in common?

The pancreas is a small organ weighing only 180 grams, yet capable of causing unbearable suffering to a person. Why is she punishing us? How is pancreatitis treated? And can you trust the advertising of drugs “for overeating”?

Word – to the head of the abdominal department of the National Medical Research Center for Surgery. A.V. Vishnevsky, doctor of medical sciences, professor, laureate of awards from the governments of Russia and Moscow Andrey Germanovich Krieger.

– Andrey Germanovich, what role does the pancreas play in the body?

– The pancreas (PJ) performs two very important functions. It produces insulin, which provides carbohydrate metabolism in the human body, and produces digestive enzymes that ensure the digestion of everything eaten by a person. If the first function is violated, diabetes mellitus develops. And as a result of inflammatory changes in the pancreas, its second function is disrupted – the secretion of digestive enzymes, which leads to serious digestive disorders, human exhaustion.

– There are two types of pancreatitis: chronic and acute. What is the difference between them?

– In chronic pancreatitis, there is a gradual extinction of the function of the pancreas, the slow destruction of its tissues and their replacement with rough scars. Chronic pancreatitis lasts for years, periods of exacerbation of the disease alternate with a temporary subsidence of pain.

While acute pancreatitis proceeds in a completely different way – rapidly. In the vast majority of cases, this is a reaction of the gland to some kind of food aggression: either to a large alcohol load, or to a gross error in the diet. The pancreas does not forgive such an insult, its enzymatic activity literally flares up, it begins to digest itself and the surrounding tissues. This condition develops rapidly, within a few hours and lead to the most unfortunate consequences – the development of pancreatic necrosis, a serious condition in which, unfortunately, a person can die, despite the best efforts of doctors.

– Is it true that pancreatitis develops on the background of psychological stress? Today, many illnesses are usually attributed to this very reason…

– Not true. Our emotional status has nothing to do with life. Unless the person is trying to cope with stress with alcohol.

– Is the incidence of pancreatitis increasing or is it stable at all times?

– Growing. Both chronic and acute.

– In connection with what? Are Russians eating better or drinking more?

– “Eat better” in this case should be understood in the opposite sense: today, higher incomes and a variety of products in stores allow people to buy and eat without restrictions what is not good for life at all: smoked meats, fatty foods, a lot of sweets, acute. And, of course, the increase in the incidence is affected by high alcohol consumption, especially low-quality surrogates.

– Let’s clarify, otherwise your words can be taken literally by many: does the pancreas suffer from good cognac or wine? Or is it still necessary to know when to stop, can you earn pancreatic necrosis on good alcohol?

– That’s right, everything needs a measure. A classic example: every year during the holiday season, we receive patients who have returned from foreign resorts, where they rested on an all-inclusive basis. The man ate and drank almost non-stop for two weeks, and the pancreas could not stand it. Or he just drank well once and ate some exotic, very spicy dish – this is enough to develop pancreatic necrosis.

That is, one person can drink hard all his life and not get sick, while another can get acute pancreatitis with a single intake of alcohol. Whoever is lucky, and this is one of the mysteries of the “behavior” of the pancreas.

– How does chronic pancreatitis manifest itself?

– Pancreatitis has specific symptoms and is difficult to confuse. Patients complain of girdle pain in the upper abdomen, which occurs most often after diet violations. And since the pancreas is located behind the stomach, adjacent to the back wall of the abdomen right on the spine, pain is often given to the back.

But! Similar pain gives and osteochondrosis. This is one of the frequent masks of chronic pancreatitis, which often misleads both the person himself and the doctor he turned to. That is why it is possible to make a diagnosis of “pancreatitis” only on the basis of a whole range of examinations and a number of other factors, including the patient’s attitude to alcohol. If a person admits that he is addicted to alcohol, and he has shingles, then first of all you should think about a disease of the pancreas, and not about osteochondrosis.

– Have there been patients in your practice who either self-diagnosed “osteochondrosis” or were poorly examined and treated for “chondrosis” for a long time while a person’s pancreatitis progressed? Or worse, pancreatic cancer?

– Unfortunately, there were many. It is very bad when people get sick, they do not turn to specialists. It is even worse when the doctor makes a mistake in the diagnosis.

– Then let’s say what the examination algorithm should be if there is a suspicion of pancreatic disease.

– Most importantly: complete blood count, fibrogastroscopy do not have a high diagnostic value for detecting chronic pancreatitis. Only methods of radiation diagnostics! The first diagnostic step is ultrasound, this is the most accessible method. Its only “minus” is that, unfortunately, ultrasound has a large operator-dependence, that is, the interpretation of information significantly depends on the professional skills of the specialist performing the study.

If the doctor finds manifestations of chronic pancreatitis during ultrasound examination – stones, post-necrotic cysts, expansion of the pancreatic duct – in this case, it is necessary to take the next step, undergo computed tomography or magnetic resonance imaging. These examination methods allow you to absolutely accurately diagnose “chronic pancreatitis” and determine the presence of its complications.

Finally, the third step – with the results of the examination, the patient must go to the doctor to determine the tactics of treatment.

– Directly to the surgeon? Or at first to the gastroenterologist?

– Very good question. Chronic pancreatitis does not always require surgical treatment. Most people with this diagnosis are observed and treated by a gastroenterologist. If we are talking only about a violation of the digestive function of the gland and a slight pain syndrome, the gastroenterologist prescribes a diet and replacement therapy with enzyme preparations, less often – physiotherapy. A gastroenterologist can treat such patients with good effect for years.

However, when there are so-called surgical complications – virsungolithiasis or simply stones in the pancreas, postnecrotic cysts, and even more so obstructive jaundice, and all this is accompanied by constant severe pain – no therapeutic measures can no longer give a good effect. In this case, the patient has a direct path to the surgeon.

However, when the so-called surgical complications appear – virsungolithiasis or simply stones in the pancreas, postnecrotic cysts, and even more so obstructive jaundice, and all this is accompanied by constant severe pain – no therapeutic measures can no longer give a good effect. In this case, the patient has a direct path to the surgeon.

– Approaches to the surgical treatment of pancreatic diseases are changing. Until recently, almost all patients were operated on by the “open” method, and today, in a significant part of patients, it is possible to do without surgery in the usual sense of the word, and perform endoscopic variants of surgical interventions. What does it look like? In the hands of the surgeon is not a scalpel, but the same flexible endoscope that is used during fibrogastroscopy. The doctor brings the endoscope to the pancreas, and with its help installs stents in the ducts of the gland, and thereby restores their patency. In the same way, small stones can be removed from the ducts of the gland or a cyst can be punctured. That is, it is also an operation, but without incisions and sutures.

I want to emphasize that for a person suffering from pancreatitis, the best option is to be treated in a specialized department.

– What does it mean – specialized?

– This is a department whose main profile is the treatment of pancreatic diseases, both surgical and endoscopic methods. In our professional “pancreatic world” there is a term “the protective effect of the large volume clinic.” It is believed that if 50 large operations on the pancreas are performed in the clinic in chronic pancreatitis per year, pancreatic cancer is a large-volume clinic. If there are fewer such operations, there is no that very “protective effect”, that is, experience that provides high results. For example, in our department more than 100 such operations are performed per year.

But that’s not all. In addition to surgeons, the clinic should have competent radiation diagnosticians who, with ultrasound, CT or MRI images, see not only gross manifestations of pancreatic diseases, but also detect the smallest details of the disease. They are able to distinguish complications of chronic pancreatitis, pancreatic cancer in the picture, to distinguish a cystic tumor of the pancreas from a postnecrotic cyst. The life of the patient depends on the accuracy of diagnosing various diseases of the pancreas, because the methods of treatment can be completely different.

And another important link in the specialized clinic for pancreatic surgery – anesthesiologists and resuscitators who are able to instantly respond to complications during and after pancreatic surgery.

– Why is this so important?

– Operations on the pancreas are technically very difficult, not only because of its inconvenient anatomical location. The trouble is that the digestive enzymes that it produces in the postoperative period work against the patient and the surgeon. This is the difference between the pancreas and other organs, which during and after operations behave “compliantly”. The pancreas reacts to surgical trauma very violently, worse than to vodka. In response to surgery, pancreonecrosis may develop in the next few hours after the operation, and nothing can be done about it, it is impossible to completely prevent it, despite the complex of drug prophylaxis that is carried out before the operation. This is a colossal problem of the entire world pancreatic surgery, which has not yet been solved. The complication rate after pancreatic surgery of 30-40% is considered to be a very good result, which can be achieved only in a specialized center with a very large experience in performing such operations.

– What happens during the operation?

– In chronic pancreatitis, we restore the patency of the pancreatic ducts, remove stones and cysts, make a resection, that is, remove part of the pancreas. In case of pancreatic cancer, we perform resection of a significant part of the organ, and with advanced tumors, the volume of the operation is very large: we completely remove the pancreas along with the duodenum and part of the jejunum. The function of the removed gland in this case is replaced for life with drugs – enzymes and insulin.

– Speaking of enzyme preparations. Is it absolutely safe to be carried away by them or not? The question is not accidental: television advertising very actively suggests taking a drug after a hearty meal, which, supposedly, “is indispensable for the stomach.