Since our inception, we have been committed to changing patient outcomes with the singular goal of turning patients into survivors. We won’t stop until this page is filled with hundreds and then thousands of survivor stories. These survivors are just a few of the many that inspire us every day. Send your story to us at firstname.lastname@example.org.
In June 2019, when I was just 43, I was diagnosed with a pancreatic neuroendocrine tumor (PNET), a rare type of tumor accounting for less than 10 percent of tumors found in the pancreas. My journey to this diagnosis was a long one, and looking back, there were definitely warning signs that something was not right with my body. In March 2018, I thought I was sick with the flu and fainted while walking to school with my children, who were then three years old and 10 months old. Luckily, they did not get hurt. However, I ended up in the hospital the next night, as doctors discovered I had two bleeding ulcers caused by what they thought was excessive use of over-the-counter pain medication (and later learned were caused by hormones from the tumor).
After the bleeding ulcers were found and treated, I remained severely anemic. At my doctor’s recommendation, I received four iron transfusions and took iron pills, but my anemia persisted. I was losing blood somewhere in my body and doctors were not yet able to pinpoint where and why. Then, in the spring of 2019, after a colonoscopy and two endoscopies, doctors discovered a small nodule in my small intestine, and a biopsy revealed it was a neuroendocrine tumor. Even at that point, I was unable to process it could be cancer. I underwent a CT scan of my abdomen and pelvis, which showed my tumor was more than four inches long and had originated in the pancreas—a pancreatic neuroendocrine tumor.
I was in complete shock when I was diagnosed, because it never occurred to me that as a young, active person with no family history of the disease, I could have a PNET. In fact, according to the American Cancer Society, the average age of a PNET diagnosis is 60 years old! Despite being scared, I never wavered from my belief that my excellent medical team, positive thinking, hope and my strong faith would carry me through this life-changing diagnosis.
After seeking a second opinion, I decided to be treated at Massachusetts General Hospital, near my home in Boston. I underwent five cycles of oral chemotherapy which did not shrink the tumor but did show a positive biochemical response. I am so fortunate my surgeon was willing to take the bold step of performing surgery even though there was blood vessel involvement. I had the Whipple surgery on November 11, 2019 to remove my entire PNET tumor. Additionally, my surgeon removed 75 percent of my pancreas, my gallbladder and parts of the small bile duct, stomach and small intestine. He also excised a portion of my portal vein, which was extremely risky, as this blood vessel carries blood from the gastrointestinal tract to the liver.
I was blessed with a loving, supportive circle of family members and friends who were there for me and for my husband after the surgery, helping with the kids and cooking meals. Five weeks post-surgery, I was back at work, and three weeks after that, my family and I celebrated with a trip to Walt Disney World. While I have some minor gastrointestinal issues stemming from the surgery, I feel great and am learning how to manage them by taking pancreatic enzymes. I am incredibly thankful I do not need further treatments. My most recent scans showed no evidence of disease. I will continue to undergo scans and tests every two months for now, but my doctor is optimistic I can start a new chapter post-cancer.
I want other PNET patients to know there is always HOPE. My tumor was entwined with my portal blood vessel, making surgery quite challenging and a procedure many surgeons would not want to take on. However, I searched for the right doctors and surgeons who were not only highly skilled, but compassionate and confident that despite my difficult case, they could successfully remove my PNET and get me back to my life as quickly as possible.
While researching pancreatic cancer, I learned about the Lustgarten Foundation and immediately connected with the Foundation’s uplifting message of HOPE and commitment to directing 100 percent of every dollar to pancreatic cancer research. The Foundation is shining an urgently-needed spotlight on this disease, raising awareness and research funding, and giving people like me faith, strength and comfort. I’m convinced the Foundation’s steadfast dedication to research will result in earlier detection and important new treatment options.
Together with family and friends, I formed Team Pezzulo and participated in the Foundation’s 2019 Boston Walk, raising nearly $17,000 for research funding. I look forward to participating in the walk again in 2020 and joining with others impacted by pancreatic cancer.
I refuse to live my life in fear and I am committed to sharing my story so others know there is hope and life beyond cancer. I am living proof you can survive a PNET diagnosis and treatment. Today, I am proud of my scar from surgery and plan to show it off in a swimsuit next summer when we go to Italy to celebrate my life as a cancer survivor!
In a few months, I will celebrate a major milestone: five years as a pancreatic cancer survivor. In March 2014, I was diagnosed with pancreatic cancer after experiencing stomach pain and heartburn, which prompted me to make an appointment with my doctor. However, before I could make it to the appointment, I developed jaundice and needed to be seen immediately. An ultrasound and endoscopy confirmed my diagnosis—pancreatic cancer.
I had no family history of pancreatic cancer, never smoked, was not overweight, did not have diabetes, and was completely surprised by the news. I was only 58 years old at the time of my diagnosis and am 63 now.
My family and I were shocked at first and experienced all of the typical emotions associated with a cancer diagnosis, especially one as statistically dismal as mine—but I knew that I needed to maintain a positive attitude both for the success of my treatment and the well-being of my family. I decided to be treated at a high-volume cancer center in New York City due to their impressive reputation and my belief that I would be in the best hands possible by doing so. My cancer was locally advanced Stage III, but was inoperable due to the involvement of a blood vessel. The surgeon referred me for chemotherapy and radiation and told me to get my affairs in order. At my initial meeting with my oncologist, she prescribed the potent chemotherapy FOLFIRINOX and I was told that if I didn’t respond well, I might only have 3-6 months to live. However, I told my oncologist that I was a fighter and expected to be one of those patients that she became amazed by.
After 3 months on FOLFIRINOX, followed by radiation therapy, the tumor had shrunk significantly, and the surgeon felt I was a candidate for the Whipple procedure.
In November 2014, I underwent surgery, but it was unsuccessful due to the involvement of the blood vessel and was aborted. Amazingly, the tumor became dormant and I was not on any treatment for two years. I was monitored every 3 months with scans to confirm stability, and it wasn’t until December 2016 that the tumor began to grow again. I was put back on the FOLFIRINOX, but it was ineffective. I then began treatment on gemcitabine/Abraxane, which stabilized the tumor. Currently, I am still on this treatment, and my most recent scan showed that although the tumor has grown, it has not metastasized.
Having cancer has made me stronger, produced a deeper appreciation for all of life’s blessings, and strengthened my ties to family and friends. I am grateful to have the love and support of an amazing team of people in my corner. It’s a cliché, but a valid one, that such challenges can bring out the best in you and help you see what is really important. A cancer diagnosis immediately makes “sweating the small stuff” a thing of the past. Today, I look at every moment as a gift and try to pack as much love and fun into my life as possible.
My advice to newly diagnosed patients is this: Put yourself into the hands of medical professionals that you trust, and don’t let statistics determine your outlook. There are exciting new advances being made in research all the time, and there are more researchers and labs working on this disease than ever before. I truly believe that a positive attitude is necessary to help your body fight this disease.
In 2015, I was diagnosed with Stage IV pancreatic cancer that metastasized to my liver, when I was only 44 years old. Given how progressive my disease was, I was told I had less than one year to live. From the moment I received this devastating diagnosis, I vowed to stay optimistic and fight the disease the best I could – not just for myself, but for my wife, teenage daughter, and my parents. I researched the leading pancreatic cancer treatment centers in the country, found an oncologist, and traveled to Boston from my home in Florida for treatment. The oncologist took a biopsy of my tumor and discovered that the tumor had a BRCA2 mutation. Typically, patients with this mutation respond well to treatment with the chemotherapy FOLFIRINOX, and subsequently, I received this potent therapy.
After eight months of taking FOLFIRINOX, I received the incredible news that I had no evidence of disease. To minimize my chances of a recurrence, my oncologist prescribed an FDA-approved treatment for certain types of breast and ovarian cancer. She based this decision on the genetic mutations found in my tumor, which indicated that the off-label use of this treatment would likely benefit me. I was one of the first pancreatic cancer patients to take this treatment, and it has worked so well since I started it two years ago that I now have my life back – working, traveling, exercising, and looking forward to my future. My most recent scans continue to show no evidence of disease. Genetic sequencing is changing how we look at cancer treatment and is giving patients like me more options.
In 2004, I went to a local hospital in Hagerstown, Maryland with stomach issues. I was later transferred to a large hospital in Baltimore after developing jaundice. There, I learned that there was a tumor blocking my liver duct—the cause of the stomach distress—and that I had Stage III pancreatic cancer. I had no prior family history of the disease and was only 44-years-old at the time of diagnosis.
After learning the diagnosis, my wife and I felt like we were in the dark. We knew little about pancreatic cancer and spent a couple of weeks trying to educate ourselves about the disease. Then, we had to stop reading. What we learned terrified us.
I chose to have the Whipple procedure at a hospital in Baltimore because there was an experienced pancreatic cancer surgeon at that institution. After a successful surgery, I followed up with chemotherapy and radiation in Hagerstown, Maryland.
In June 2018, I underwent my most recent scan, which showed no evidence of disease.
Pancreatic cancer taught me what really matters in life. I wouldn’t have made it through this diagnosis and treatment without the support of my wife. It brought us even closer and we learned to enjoy life one day at a time.
Today, I am a healthy 58-year-old who is living life to the fullest. As a pancreatic cancer survivor, I would advise a recently diagnosed patient to look at all of the options available to them and to find a great doctor like I had. Your only job is to focus on getting better and keeping a positive outlook.
The Benefit of Being Your Own Advocate
“Yes, I’m calling with your CAT scan results. You have a cystic lesion on your pancreas of 1.7cm and we recommend you follow up in one year.”
What would you do if you heard that news from your internist’s office?
Experts are everywhere. We respect them and, because they’re “experts,” we sometimes take what they tell us as gospel with blind trust and confidence. Boy, am I glad I opted to become my own advocate and not take the routine word of my doctor. Although he’s a qualified internist, specialties are another matter.
Here’s my brief story: After receiving that phone call, I immediately said “no way.” With results forwarded to my GI, he suggested an endoscopy with ultrasound to take a closer look. During that procedure and biopsy, it was discovered that I had a 95 percent chance of having a malignant tumor on my pancreas. I began researching medical/surgical teams and outcomes and decided to go to a hospital in Baltimore for my surgery.
A successful Whipple surgery was conducted on August 14, 2017 and after six months of chemotherapy, I have been on the road to recovery. I now volunteer at the infusion center to help other patients cope with their situation and pass along the lessons I’ve learned along the way.
And the kicker: My disease was caught very early, because I was my own advocate. What if I had listened to my internist and waited a year to follow up? You might not be reading this story right now. From the beginning, I was proactive and determined to control the direction of my own health. I would encourage any newly diagnosed patient to be your own advocate and know what’s in your best interest. Remember to trust your instincts and speak up when it comes to your health.
You’re the most important person to you and know yourself best. Trust your instincts and go with them. When it doesn’t feel right don’t obey, say “no way!”
I found out I had pancreatic cancer after suffering from jaundice. At first, the doctor thought it was caused by my gallbladder, and operated to remove it. Two weeks after the surgery, I went in to have the stent removed from my bile duct. During this procedure, the doctor made a startling discovery—the bile duct was closed due to a 1.8 cm pancreatic tumor that was pressing on it. The next day, I went back to have it biopsied.
The official diagnosis came in October 2014—pancreatic adenocarcinoma at the age of 51. For the better part of the past year, I had been misdiagnosed, even undergoing two ultrasounds and two scans that failed to detect the tumor.
Prior to learning I had pancreatic cancer, I experienced a range of symptoms—weight loss, fatigue, and loss of energy. While I did have a family history of pancreatic cancer on my paternal side, I only recently learned that my first cousin on my father’s side underwent the Whipple procedure as well.
After my wife and I learned the news, she immediately started researching my options and began searching for a reputable hospital and surgeon. One doctor’s name kept coming up in her search, and we decided to see him in Baltimore.
My treatment plan included a successful Whipple procedure and FOLFIRINOX and radiation afterwards. I was told I was Stage IIB, as 3 of 23 lymph nodes were affected. Four years after the ordeal, my most recent scan continued to show no evidence of disease and my CA 19-9 levels are currently at 14.
Today, the only thing I take is an enzyme with my meals to help with digestion. For the most part, I have resumed my daily life. I’ve modified my diet to maintain my weight and typically eat 6 meals a day, which includes a lot of buffets!
I was a man of strong faith prior to my diagnosis and that helped me cope with what I was facing. Still, learning I had pancreatic cancer taught me many life lessons, one of which was to live for each and every day. I am extremely blessed to be here and am grateful to have had a wonderful caregiver in my wife who fought just as hard for my survival as I did. Pancreatic cancer also brought me my biggest blessing, which has been all of the people who came into my life as a result of my diagnosis. The first pancreatic cancer survivor I met was Paul, and I was fortunate enough to become great friends with him and his family who I still visit in Ohio. Unfortunately, Paul’s cancer returned, and I am sad to say he didn’t make it. His wife wanted me to have a lighter that he carried with him every day, even though he didn’t smoke. A day hasn’t passed that I haven’t had that lighter in my pocket.
I would advise any newly diagnosed patient to be proactive upon hearing the news and to do your research and be your own advocate. My positive attitude, supportive wife, and incredible team of doctors are what helped me get through this diagnosis and treatment.
I am a survivor. I survived the Holocaust. Then, I survived a brain tumor. And, then, I was diagnosed with pancreatic cancer when I was 72-years old. In December 2009, I was traveling to visit my son in California when I began experiencing awful back pain that was accompanied by digestive issues and stomach pains. When I returned home, I made an appointment to see my gastroenterologist who ran many tests and was not satisfied with the findings. He recommended that I see a specialist at a hospital in New Brunswick, New Jersey who performed an endoscopy which showed that I had pancreatic cancer.
When I learned that I had pancreatic cancer, I was devastated. My wife had an aunt who passed away from the disease, but otherwise I had no connection. Fortunately, my daughter is a genetic counselor in New York City and was able to recommend an oncologist at the hospital who suggested that I participate in a clinical trial. I agreed and started chemotherapy treatments before undergoing a Whipple procedure. The procedure was successful, and as part of the clinical trial, I went through another round of chemotherapy and was followed by routine scans every couple of months thereafter.
In 2018, I celebrated being a 9-year pancreatic cancer survivor. Now, I am monitored on a yearly basis through CT scans and MRI’s. My most recent scan in June 2018 continued to show no evidence of disease.
I am grateful that my gastroenterologist was thorough and was able to diagnosis the disease when it was in an early stage and operable. I am also thankful to the incredible team of doctors that I saw in New York City—starting when I had my brain tumor removed 25 years earlier and later when I underwent the Whipple procedure at the same hospital.
My diagnosis reinforced how precious life is. I’ve been fortunate in my lifetime to be a survivor of many things and I’m very thankful to have had the support of my family through it all.
If I could offer any advice to a newly diagnosed patient, I would advise them to see a reputable doctor in a hospital setting that they have confidence in. A pancreatic cancer diagnosis can be difficult to digest, but I am glad that we were aware of the Lustgarten Foundation who is doing an incredible job on the research front and keeping patients informed of new developments. I am proud to be part of the Lustgarten family and participate in their walks to offer hope to other patients, survivors, and their loved ones.
On August 3, 2015, I saw my primary care doctor to report the symptoms I was experiencing— severe stomach and back pain; rapid, extreme weight loss (over 100lbs); excessively high sugar counts; distaste for foods (metallic), clay-colored stools, and dark urine. My doctor ordered an ultrasound and blood work, which showed that my bilirubin count was off the charts and the ultrasound revealed a mass on my pancreas. A day later, I underwent a CT scan, which confirmed a diagnosis of pancreatic cancer. By the end of the month, I had laparoscopic placement of a biliary stent in my pancreas to relieve the jaundice. A biopsy was performed during the surgery and the doctor determined what stage cancer I had. It was Stage IIB, which made me eligible for the Whipple procedure.
I was 73 years old when I was diagnosed with pancreatic cancer and had no prior family history of the disease. Absorbing the diagnosis was difficult at first—there were so many things that I still wanted to do in my life. My family and I were in shock and terrified of the outcome, especially after researching the survival rates of this type of cancer. Given the statistics, I was not optimistic, but my family tried to remain positive and encouraged me to undergo the Whipple procedure. What motivated me to go through with the surgery was the hope that, if I survived, I could spend more time with my husband, four children and eight grandchildren.
I underwent a nine-hour Whipple procedure and was in the hospital for 12 days. After the procedure, pathology revealed that two out of the 36 lymph nodes that were removed showed evidence of disease and that the cancer had spread outside my pancreas. I knew that I would need further treatment.
In October 2015, I started 12 weeks of chemotherapy, where I agreed to be part of a 5-year study. Ultimately, I was not selected to be in the experimental drug group and received Gemcitabine.
Since completing chemotherapy in March 2016, I have scans every 12 weeks, with my most recent scan in August 2018 showing no evidence of disease.
Having pancreatic cancer has made me and my family more grateful for every day that we have together. It has brought us even closer, and their support has helped me get through the rough times when I wanted to give up hope. Now, I try to do as many things as I can on my “bucket list,” such as taking a hot air balloon ride, kayaking, and traveling.
If I could offer advice to a newly diagnosed patient, I would tell them to get treated at the best hospital possible and do as much research and self-advocacy as they could. I found leaning on family and friends and the power of prayer for support, to be very helpful during my diagnosis and treatment. While a pancreatic cancer diagnosis can be devastating, it is important to remain hopeful and treasure every moment that you can. Remember, there are resources available and organizations that can help you cope—such as the Lustgarten Foundation.
I hope that by sharing my story others are made aware of the early warning signs and see the importance of early intervention.
There is one three-word statement we always remember, but don’t want to hear: “You have cancer.”
In June 2009, a doctor conveyed those terrifying words to me. After delivering this crushing news, he told me I should find a surgeon, but I was paralyzed by fear that everything I took for granted, including my family and friends, would disappear.
Prior to my diagnosis, I was suffering from a grinding pain in my abdomen, fatigue, cloudy whites of my eyes, jaundice and intolerable itching which began benignly around my chest but progressively spread until I itched from head to toe and nothing could relieve it. I was lucky these symptoms appeared early and the tumor was detected at a treatable stage, as most patients are not diagnosed until the disease has progressed. I underwent the only potential “cure,” a surgical procedure known as the Whipple, and my surgery was a success. Only 15-20% of patients are eligible for this surgery.
Following surgery, my wife saw an ad in our Long Island newspaper for the Lustgarten Foundation’s pancreatic cancer walk, and I discovered that 100% of donations directly fund research. Less than one month after my surgery, my family and I attended the 2009 walk. Unfortunately, most participants walked in memory of someone who died from this disease, and I met only one other survivor. By 2011, there were nearly a dozen survivors at the walk’s Survivors’ Tent. In 2012, following a move to Florida, I started attending the Foundation’s annual Fort Myers Walk and have met more survivors each year.
June marked my 9-year anniversary as a survivor. To commemorate this milestone, I invite everyone impacted by this disease to join our pancreatic cancer community at one of the Lustgarten Foundation’s more than 40 walks nationwide. Together, let’s make sure there are more people like me waiting to greet you at the Survivors’ Tent.
In March 2012, I was a healthy 53-year-old, who was living an active life in South Florida. That all changed when I started experiencing shortness of breath and back pain that I likened to sciatica, followed later on by severe stomach pains in my upper abdomen. At first, I visited my local urgent care center and my symptoms were quickly dismissed. Then, after a night of debilitating pain, I went to the emergency room. The doctor on staff ordered a CT Scan. When he returned to my room he indicated that there were spots on my pancreas, liver and lungs. At that time, I was admitted for further testing and a liver biopsy later confirmed I had Stage IV inoperable pancreatic cancer. I was petrified.
The doctor on staff suggested I get a port inserted in my chest for chemotherapy treatments and then see the hospital’s pancreas oncologist. Upon waking up from the port surgery, the doctor and his nurse walked into my room. I asked him, “What’s my next step?” He replied, “It’s too late for you. Chemotherapy will not work. You will be gone within 8 months.”
Once I was discharged, I immediately got a second opinion at the University of Miami Sylvester Comprehensive Cancer Center. As soon as the doctor and his team at Sylvester walked into the exam room they made me feel comfortable. I knew I was in the right place. The doctor reassured me and said, ‘If your body can handle the treatment, it will work.”
The following week I began a chemotherapy treatment of FOLFIRINOX, which I continued for 17 months before going on ‘chemo holiday’ in July 2013, where I remain today. During treatment I weighed only 90 pounds, couldn’t eat, and developed neuropathy, painful nerve damage in my hands and feet. With each scan, my tumors began shrinking and my hope and determination increased. My most recent scans show no evidence of disease.
My treatment at the Sylvester Comprehensive Cancer Center and the encouragement I received from the doctors and nurses while I was there made all the difference in my treatment and recovery.
Today, I once again lead an active lifestyle and enjoy bike riding, fundraising for the Sylvester Comprehensive Cancer Center and I am a member of the Patient and Family Advisory Council. I know how devastating receiving a pancreatic cancer diagnosis is and I want people to know that they should have hope. I share my story to inspire others and show them that they, too, can have a positive outcome.
Cancer tried to take my life, but instead it gave me a new purpose.
In December 2007, I was diagnosed with pancreatic cancer. At the time, a pancreatic cancer diagnosis was the furthest thing from my mind—I was 63 years old and had no symptoms or family history of the disease. What brought me to my internist in the first place was a bout of diarrhea, which turned out to be unrelated to the diagnosis. Still, my doctor was insistent that we do further tests to find the cause, and his persistence ultimately ended up saving my life.
Two months after that initial visit to my internist, we ran the suggested tests and a tumor was found. My doctor was confident that it would likely be benign, and I tried to put the findings out of my mind. I was shocked when I found out the tumor in the tail of my pancreas was malignant and I would need surgery. In March 2008, I underwent a successful Whipple procedure and didn’t require additional treatment, as the disease was diagnosed at an early stage.
In March 2018, I celebrated being a 10-year pancreatic cancer survivor. I credit this positive outcome to the thoroughness of my internist and his recommendation of an excellent surgeon and facility. Even though my scans after the Whipple showed no evidence of disease, I still undergo routine scans each year. I try to live as independently as possible, have modified my diet to eat healthier, and I exercise regularly.
If I could give any advice, I would tell people to listen to their bodies. If something isn’t right, see your doctor. Early detection is why I am here and thriving today.