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 [email protected].
I was absolutely shocked.
It didn’t make sense. I was a healthy person. I kept my weight where it needed to be, I exercised and I always took vitamin supplements. When it happened, I was 66 and looking forward to retiring from my career as a nurse.
At the end of March 2014, I didn’t feel well. I had attended a banquet in Iowa City, and the next day I thought I must’ve eaten something which upset my stomach. When the feeling didn’t go away, I grew concerned. After consulting with my nurse practitioner, Jennifer, I knew I had to take this seriously.
During an ultrasound, doctors noticed a mass at the head of my pancreas. I was terrified. I didn’t know how to be brave. I truly thought I was going to die. Jennifer did her best to comfort me and give me hope. Her optimism and positive spirit allowed me to breathe.
Tests revealed my pancreatic duct was blocked, so I immediately underwent a procedure to have a stent placed to drain bile and to confirm the diagnosis: Stage II pancreatic cancer. My first oncologist believed I was too old to handle the strongest chemotherapy treatment and my chances for long-term survival were minimal.
I knew I deserved better.
I sought a second opinion from Dr. Daniel Berg, from the University of Iowa Hospitals & Clinics. He believed in me and was kind, positive and informative—truly everything we, those touched by pancreatic cancer, need in a doctor.
Because I was diagnosed at Stage II, Dr. Berg told me I fit in a small subgroup with a high probability for a cure using a powerful chemotherapy called FOLFIRINOX. My first treatment went well, although the final three were much more challenging. The treatment made me sensitive to cool temperatures—I’d wear a winter coat and gloves in the middle of spring! Food lost its taste and I started losing my hair and weight. It was certainly harsh and disheartening. But, with the support and reassurance of Dr. Berg, who allowed me one piece of cheesecake a day for the extra calories, and my dear friend and hair stylist, who helped me acquire a beautiful wig, I felt wonderful again.
Throughout treatment, people told me how brave and strong I was, though I didn’t always feel it and I didn’t want to let them down. My cancer nurse gave me the best suggestion: “You need to tell people you aren’t feeling particularly strong that day, and they’ll understand. They’ll want to help you.”
My advice: Take the help! If people offer to help you, whether it is a family member, a friend, or a kind neighbor, don’t turn them away. The journey is long, and you cannot do it alone.
My older brother and my sister-in-law’s support never wavered. When I was too weak to walk my dog, Maggie, they walked her. When the pain became too much and I couldn’t eat well, they made me soups. They took me to my chemotherapy appointments, scheduled every other week, and brought me back home.
I completed my FOLFIRINOX therapy in June 2014. A short time later, a CT scan revealed that while my cancer had not spread, the tumor had not shrunk as much as my oncologist had hoped. So, we devised another treatment plan—radiation and more chemotherapy with a treatment called Gemcitabine. Since there was no downside to it, I also agreed to participate in a Phase One clinical trial at the University of Iowa using ascorbate (high-dose Vitamin C, administered intravenously). The plan was 28 days of radiation and ascorbate, Monday through Friday. Every Monday, I also received Gemcitabine before the radiation and ascorbate.
By August, my treatment was completed. Luckily, treatment shrank my tumor so I could undergo a Whipple surgery—a complicated procedure giving me the greatest chance for long-term survival.
When I learned my original surgeon needed to take a medical leave of absence and wouldn’t perform my surgery, it broke my heart. He was battling his own cancer but remained as supportive as ever. He sat down, held my hand and shared he had contacted Dr. Clifford Cho of the University of Wisconsin—Madison, who had trained at Memorial Sloan Kettering Cancer Center and who agreed to do my surgery. When you have the right doctors in your life, it makes your fight more bearable, energizes you to plan for the future and puts your mind at ease. Dr. Cho successfully performed my Whipple on October 6, 2014.
Throughout my battle with pancreatic cancer, my family and friends gave me hope and strength and prayed for me. And I kept fighting for my life. Pancreatic cancer should not be a death sentence for anyone, and every day, I thank God I’m alive. I encourage people to find the best medical team possible for them and to consider clinical trials, because without them, we would never find solutions to cure cancer.
Up until recently, I had a scan every six months to check my cancer markers. They have all come back clean. I am incredibly grateful to be a six-year survivor!
One of the best things I did to connect with others impacted by pancreatic cancer was to get involved with the Lustgarten Foundation. I was amazed when I learned 100% of donations fund research! After my own investigating, I discovered a Lustgarten walk in Marion, Iowa, about 25 miles from my home, and I knew I had to join! People who attend the Foundation’s walks are very caring and friendly and are all committed to the same mission of fighting this devastating disease and one day, finding a cure.
I hope awareness about pancreatic cancer will eventually grow, thanks to organizations like the Lustgarten Foundation, and I am so thankful for everything the Lustgarten Foundation does to fund research, support patients and organize walks and other events to draw attention to this disease. I couldn’t ask for better people to be with me on my journey.
On April 21, 2019, during my routine training session at the gym, my trainer noticed I looked jaundiced and recommended I see a doctor. Prior to this, I was experiencing urine discoloration but I thought this was caused by dehydration. At the time I was 73, in excellent health, lived a very active lifestyle and was not in any pain. I saw my doctor that afternoon and after a CT scan the next day I was blindsided by a diagnosis of Stage II pancreatic cancer. My tumor measured 5 centimeters—nearly 2 inches! How could I, someone with no history of cancer and no known risk factors, who had never even been admitted to a hospital, receive such a crushing, life-altering diagnosis? Thanks to my personal trainer, my pancreatic cancer was diagnosed before it had metastasized.
My wife, Nancy, my children and I were in complete shock and disbelief. We were incredibly frightened by the diagnosis and filled with immeasurable anxiety. In fact, the moment I was diagnosed it felt like I was hit by a two-by-four across my face. However, refusing to be paralyzed by fear, I immediately went into action and reached out to everyone I knew who had any type of cancer to learn from their experiences and to seek their advice. I found research demonstrating a patient’s attitude helps with treatment, surgery and recovery so I vowed to stay positive. I made a conscious decision to block out the terrifying survival statistics and focus on my individual treatment and healing. Thanks to the support of my devoted family and the expertise of my phenomenal medical team, I was able to stay positive throughout.
Luckily, after the results of my first CT scan, my gastroenterologist thought my tumor was resectable, meaning it could be surgically removed, which is an option for less than 20 percent of pancreatic cancer patients. I researched and interviewed surgeons near my home in the San Francisco area and selected my surgeon based on his experience performing thousands of Whipple surgeries. This is a complicated, lengthy surgery offering pancreatic cancer patients like me the best chance for long-term survival.
Before I was eligible for surgery, I needed chemotherapy treatment to shrink my tumor. I was treated with FOLFIRINOX, one of the harshest chemotherapy regimens imaginable, beginning in May 2019. This treatment shrunk my tumor in half and I was able to undergo Whipple surgery five months later on October 2, 2019. During my chemotherapy treatments I also underwent a molecular test of my tumor to help determine the most effective type of chemical to use for my chemotherapy. While molecular testing is important for every cancer patient to have, it didn’t reveal any specific beneficial results for me.
During my Whipple surgery, my surgeon removed my gall bladder, bile duct, half of my pancreas and 27 lymph nodes, all of which tested clear. I was incredibly fortunate that my surgeon didn’t have to remove any part of my stomach. After hearing these results I was able to breathe a tremendous sigh of relief. Recovering from the Whipple surgery was challenging as I lost a lot of weight and muscle mass. I was determined, however, to move forward and regain the lost weight and strength. After my recovery, I was placed on a chemotherapy maintenance program for five months and began exercising again with my trainer. I am convinced my activity level was critical to my recovery and helped me cope mentally and emotionally with having pancreatic cancer.
Since May 2020, I have been free of medication and my post-surgery scans and blood work have shown no evidence of cancer cells. My last scan was on October 12, 2020, and was clean. My current protocol is a blood test every two months and a CT scan every four months.
Pancreatic cancer has definitely changed my views toward life. I have a greater appreciation for life and I am touched to have so many family members and friends who have rallied around me and have helped me stay positive. I will always be anxious for the future as I am fully aware that my fight against pancreatic cancer is not completely over, but I am tremendously grateful to be here to tell my story and to be in a healthy place again. I have regained 20 of the 25 pounds I lost after surgery and I am rebuilding my strength daily.
When researching my diagnosis, the Lustgarten Foundation appeared in some of my search results so I explored the site to gain more information about the Foundation. I decided to contribute to the Lustgarten Foundation because of several factors:
- The Foundation has a unique commitment to ensuring 100 percent of every donation goes directly to research.
- The research the Foundation is performing has an excellent chance of success.
- The Foundation has been in existence for over 20 years and is very well-established.
- The Foundation has a very impressive Board of Directors.
I believe federal funding for cancer research is lacking and this makes it more important for organizations such as the Lustgarten Foundation to bridge this gap. In 2020, I designated my donation for the early detection research on the CancerSEEK blood test program and the Foundation’s research on organoids for personalized medicine. Researchers are developing the CancerSEEK blood test so it can detect the early presence of multiple cancers, including pancreatic cancer, and also identify the origin of these cancers. The CancerSEEK research lays the groundwork for a single blood screening test for multiple cancers that could be offered as part of routine medical checks. Additionally, the Lustgarten Foundation is spearheading a clinical trial involving the organoid—a three-dimensional cell structure system which reproduces a patient’s tumor to test it repeatedly with different drugs. The organoid helps determine which first-line treatment is most likely to be effective in each patient and also helps researchers identify tailor-made therapies for patients who do not respond to either first-line treatment.
I know patients’ lives will be profoundly affected when doctors are able to find the disease at an early, treatable stage and remove the cancer surgically. I am confident the research supported by the Lustgarten Foundation could have a life-changing impact on patients and their families. Thanks to my early detection, I am blessed to be in the top one percent of pancreatic cancer patients in terms of survival and now I believe it is my responsibility and my privilege to help more patients have the same result.
Bill’s Advice for Navigating a Pancreatic Cancer Diagnosis:
- If you feel there is something wrong with your body and the first doctor doesn’t find anything, seek additional opinions until someone can figure your situation out.
- Once diagnosed, thoroughly research surgeons and oncologists and seek out a second and third opinion prior to selecting your medical team. If you are having surgery, identify a transplant surgeon who has specific expertise in pancreatic cancer or a surgeon who is very experienced with performing Whipple procedures.
- Thoroughly research pancreatic cancer and develop questions to ask your medical team. If you are properly armed with the knowledge available you’re in a much better position to advocate for yourself.
- Never go to a doctor’s appointment alone. You and the person accompanying you should compare notes after each appointment.
- You have a voice as to your medical team’s path to your success. Make sure you understand it and ask for alternatives if they are not mentioned.
- Understand the side effects that you may experience from the medication you will be taking and pay close attention to how to prevent them, if possible. Communicate with your oncologist and follow his/her instructions for all medications.
- Have a positive attitude and surround yourself with family and friends.
- Speak to survivors directly to understand their experiences so you are better prepared for your own journey and can learn from their path.
Anatomy of a Sickness
By Linda Halpern
My troubles began in December 2019 quite innocuously—a mild pain in my midsection which could easily have been ignored for a few weeks or maybe a month. It was soon joined by more intense pain in my back. Perhaps, I thought, I had strained it at the gym.
My first doctor, a trusted internist, told me to take an over-the-counter medication for a few days. When I didn’t get results, I saw a trusted gastroenterologist who thought I had an ulcer. I insisted I wanted an endoscopy, even though my doctor didn’t want to put me through that invasive procedure. Reluctantly, she performed the endoscopy, which actually showed a tumor in the pancreas. I knew my condition was serious when I was quickly scheduled for a second endoscopy the next day to provide more detail and clarity with a second doctor on the scene.
Despite my shock and fear over having a pancreatic tumor, I knew I had to face this diagnosis head-on. The medical wheels began to roll at a very brisk rate. We located a surgeon, Dr. Michael Kluger, at the prestigious NewYork–Presbyterian/Columbia University Medical Center. If you had seen me that cold day in January 2020, walking into Columbia, you would have thought I was a nurse rushing to work or maybe a physician on the way to making daily rounds. I was walking at a healthy, energetic clip, limited only by the surge of pedestrians in front of me doing the same. You would have guessed wrong.
I had already been diagnosed as a pancreatic cancer patient, having just undergone an extensive series of diagnostic tests. Why had this happened? I wondered. I thought I had always done the things people do to live in a healthy way: I walked briskly every day for at least a half hour. I didn’t smoke or drink. I went to our family doctor on a regular schedule for check-ups. And I conscientiously attended a local gym every day to work out on an upright exercise bike for the better part of an hour. In addition, I cared for my husband, Martin, a retired dentist. I took care of a ten-room home in Yonkers, New York, and did everything that being a suburban housewife entailed—all this while teaching secondary math for 24 years to energetic middle school and high school students.
Did I ask, “Why me?” No, I actually asked myself the opposite question: “Why not me?” My mother, at the age of 88, died of ovarian cancer. After many years of working in the garment industry in New York, my father was diagnosed with liver cancer that was probably pancreatic cancer. So why, indeed, not me? Three years ago, I underwent a lumpectomy for DCIS (ductal cancer in situ or in place), but I was told my pancreatic cancer was totally unrelated to this previous cancer.
So there I was in the busy lobby of NewYork–Presbyterian struggling to keep up with my daughter, Ellen, who preceded me, as usual. Long-legged and determined, she was and is, my “case manager,” wonderfully capable and reliable, as is my son, Robert, a retired retina specialist living in Florida. They motivate me, cheer me up when things seem unmanageable, and in Ellen’s case, transports us back and forth to doctor appointments. Marty, my faithful and loving husband of about 60 years, brought up the rear. Eighty-six and somewhat stooped from leaning over a dental chair for more than 40 years, he is still my rock and inspiration.
On the eighth floor, we entered Dr. Kluger’s crowded waiting room. Who knew so many people could have problems like my own? Where had they been hiding? Until Alex Trebek’s recent disclosures, I thought pancreatic cancer was somewhat of a rarity.
There was something about Dr. Kluger I liked from the onset. Youthful, with a welcoming smile, he could have been a neighbor or a former student now grown. Because it was discovered early, my tumor measured only 3 x 1 mm. It was located in the head of the pancreas and as the doctor explained, it would be advisable to undergo Whipple surgery, a procedure named after Allen Whipple, the early 20th century physician who had devised it. This surgery was not for the faint of heart. It involved removal of not only a part of the pancreas, but the entire gallbladder, the common bile duct, a section of the stomach and a large section of the duodenum (small intestine.) Dr. Kluger scheduled my surgery for January 14, 2020. However, we subsequently ran into a major snag when with further investigation, doctors discovered an artery was lying very close to the tumor, precluding surgery. I would first need two months of chemotherapy—which turned out to be three months—to shrink the tumor before surgery could be attempted.
While I was undergoing chemotherapy, I spent a lot of time agonizing over whether or not the Whipple surgery was the course of action I wanted to pursue. Was I brave enough to go ahead with it? Would it work? Even if I could gain some months (or years?) of added life, was it enough to justify the long months of post-operative recuperation time necessary? I hesitated to commit to this drastic mutilation of my body, but my family was adamant this was my only viable option with even a small chance of beating the cancer. There really was no “good” choice with assured results. I’m 82 years old, I argued. I’ve lived a good life. Why don’t I just enjoy the remaining time I have left?
Families can be very persuasive, and mine was no exception. Thomas Moore once said, “The child is father to the man.” At some point in life, the parent and child reverse roles and authority seems to reside in our offspring. We then depend on our grown children for major decisions. At their prompting, I decided to fight with all my strength and undergo the Whipple procedure. Early in the morning on May 28th, I arrived at the surgery floor of NewYork–Presbyterian, scared stiff.
The coronavirus pandemic was well into its third month by this time and going strong. Somehow, despite the serious coronavirus threat and the hospital rules prohibiting family members from accompanying patients to the hospital, I summoned the courage to enter the hospital alone, facing my extreme fear about the surgery and about the walk through the crowded corridor and elevator.
My operation had been scheduled for five hours, but I honestly don’t know how long it took. I remember being situated in my room after the surgery in good spirits because, incredibly, I had made it through. I stayed in the hospital for six days during which time I was alternately very tired or very bored, as the pain management at Columbia was excellent. I was now prepared to follow this journey whichever way it might lead. Meanwhile, I had hope for the best outcome possible. My plan is to continue with chemotherapy for two months as a preventative measure to ensure no cancer cells escaped during surgery.
In our country, pancreatic cancer may be thought of as the “stepchild” of other cancers. It receives less federal research funding, with the majority of the research funding allocated to more prevalent cancers. This disease has some of the gloomiest statistics, and sometimes it’s hard to remain positive. However, it is my intention to share my story to call attention to pancreatic cancer and to emphasize the need for more research and more funding so patients can be diagnosed before the disease spreads extensively. I remain hopeful my outcome will be positive, and I also am confident the research the Lustgarten Foundation is supporting to advance early detection and new treatments will ensure many more patients become survivors.
There are some important lessons to be learned from my experience:
1. Never ignore your symptoms if they don’t disappear in the first couple of weeks.
2. Do not be convinced by others that “it will pass.” The doctor’s assurances must be challenged if you know in your heart they do not make sense to you. Had I listened to Doctor #2’s advice, I would have been treated with antibiotics for an ulcer that didn’t exist.
3. Above all, be your own advocate. If you feel things are not right, they probably aren’t.
4. Seek other medical opinions. Do not be afraid to subject yourself to all the diagnostic testing recommended. It is painless.
5. Don’t get discouraged. Your doctors are trying hard to do what’s best for you. Follow their advice, but question it if necessary. It has to make sense to you. You know your body better than you think. Good luck!
“My Patient Saved My Life”
In October 2010, while on vacation with my wife, I started experiencing night sweats. Upon our return home to Albany, NY, I saw my primary care physician and underwent tests to uncover the cause of these night sweats and the reason for the high white blood cell count my doctor discovered. However, I didn’t consider pancreatic cancer until a chance conversation with one of my ophthalmology patients. She mentioned her sister had just been diagnosed with the disease after presenting with very vague symptoms. Something about our conversation unnerved me, and I asked my doctor to order a CAT scan of my pancreas. It turns out my patient’s visit literally saved my life.
I was shocked and shattered when I learned I had a six-centimeter tumor in the distal part of my pancreas and cancerous lesions in my liver. At 70 years old and despite being physically active and having no family history of the disease, I joined the thousands of other Americans facing a pancreatic cancer diagnosis. In that surreal moment, my entire life permanently changed.
Immediately, I visited a local pancreatic cancer specialist who wasn’t optimistic about my chances for survival. He referred me for a biopsy, which revealed I had the most malignant form of pancreatic cancer. Reeling from these results, I met with a pancreatic surgeon who performed a laparoscopy in the operating room and closed me up. He informed my family my condition was inoperable. A grueling chemotherapy regimen might give me six months to live. His advice was to leave me be and let me go somewhat comfortably in three months.
Completely devastated, I sought a second opinion at Memorial Sloan Kettering Cancer Center in New York City and, unfortunately, the surgeon agreed my cancer was inoperable. I returned to Albany, discouraged but willing to fight because my family needed me. I met with another oncologist, who prescribed chemotherapy treatments every other week, where I would go home after the initial dose and a nurse would then hook me up to an additional chemotherapy drip for two days.
Shortly after treatment began, my white blood cell count was so depleted I ended up in the emergency room. I experienced multiple side effects from the chemotherapy, including sores all over my body, nausea and constant hiccups, and at one point, I lost over 30 pounds. I focused on following a nutritious diet to maintain my weight despite the chemotherapy treatments ravaging my body. I found keeping my weight up helped me regain some stamina and strength. Every night, my wife and I would watch cooking shows together, hoping the mouth-watering recipes would get me excited about eating again.
Through a positive attitude, the constant support of my family and friends and the power of prayer, I managed to endure this treatment regimen for around five months. I was terrified to receive the results of my post-treatment scan because I didn’t know how I would continue the difficult regimen if my tumor had grown. As I sat anxiously in my oncologist’s waiting room, he walked down the hallway to another patient’s room and paused to give me a thumbs up, and for the first time in months, I felt something good was happening for a change.
My scan results showed my pancreatic tumor shrank from six to two centimeters, with no new lesions! Even my oncologist was surprised by these significant results and encouraged me to consult another surgeon at Memorial Sloan Kettering Cancer Center. The surgeon told me what I’d heard before: he would attempt to operate but couldn’t promise the procedure would be successful. The surgeon asked if I was a glass-half-full or a glass-half-empty person; I’m an optimist by nature and chose to focus positive energy on having the surgery completed this time.
During my surgery, my doctor removed the entire tumor, my spleen, a portion of my stomach and some lymph nodes and killed my liver lesions using cryoablation, or extreme cold. Afterward, as a precautionary measure, I underwent two months of a more bearable chemotherapy treatment. After this therapy, my CAT scan showed no evidence of disease, and hearing this news was one of the happiest moments of my life.
I discovered the Lustgarten Foundation when my daughter participated in the Albany Pancreatic Cancer Research Walk, and I now wear my Lustgarten HOPE hat with pride! The research the Lustgarten Foundation is conducting is so critical because if we can predict who is at an increased risk, and if we have more treatment options available, then we can save more lives and create more hope.
This experience has taught me to not get upset about small things and to have a more relaxed, more spiritual outlook on life. Now, 10 years after my initial diagnosis, all my bloodwork continues to be within a normal range, and I am more attuned to my body, should any symptoms arise again.
My wife and I are blessed to celebrate 57 years of marriage in 2020 and to enjoy our wonderful family, including our 10 incredible grandchildren. I recently turned 80, and as a birthday present, my port was finally removed! I can’t imagine a better milestone to celebrate.
“I’m not going anywhere!”
In May 2018, just after my 58th birthday, I started feeling light-headed during my CrossFit workouts, which I had been doing for more than seven years, and then while at work as a New York City teacher. Despite undergoing multiple tests showing normal results, I began experiencing sharp pains in my stomach, reminiscent of the ulcer I developed 20 years ago when my son was diagnosed with sarcoma. (This year, we celebrated my son’s 19th anniversary as a cancer survivor!) After a routine colonoscopy and an endoscopy, which I was sure would reveal another ulcer, I learned the devastating, unthinkable cause of my symptoms: Stage IV pancreatic cancer. The tumor had already invaded my duodenum, which is the first part of the small intestine that connects to the stomach. My initial thought was that no one survives pancreatic cancer and I was going to die.
That first month after the diagnosis I was totally out of my mind with fright, shock and anxiety, giving away many of my favorite possessions to friends and family because I feared the worst. I shook uncontrollably and cried every day and tried to cope by praying for mercy. Prior to learning I had pancreatic cancer, I, like many other people, wasn’t exactly sure where the pancreas was even located, or what its purpose and function were, and I couldn’t fathom what was happening. How could someone like me, who exercised consistently, spent a lot of time hiking and doing other outdoor activities, followed a healthy diet, got plenty of rest and had no family history of pancreatic cancer, be diagnosed with this disease, which has the lowest five-year survival rate of any major cancer?
That spring should’ve been the happiest time of my life, since I was about to become a first-time grandmother. After many challenging years as a single mother raising my three children, I was now enjoying my time as an “empty nester” and I was looking forward to retiring soon. Instead of preparing for my grandchild’s arrival, I was confronted with the heartbreaking fear in the eyes of my loved ones. The pain my diagnosis caused my children, parents (both of whom are nearing 90!), siblings and friends was unbearable to see. I was absolutely rattled.
About a month after my diagnosis, while I was preparing for my first surgery, the fighter and survival instinct kicked in. I couldn’t let anything, not even a life-shattering pancreatic cancer diagnosis, get in the way of meeting my grandchild. My thoughts shifted to “I’m not going anywhere!” I knew I had to channel all of my energy and determination into fighting pancreatic cancer. I wanted to continue to be the rock for my children and welcome my first grandchild into the world.
The initial treatment plan focused on my undergoing a Whipple surgery, which I learned was a complex operation with a long, brutal recovery. During the surgery in June, my surgeon discovered the pancreatic cancer also had spread to my abdomen. As a result, he was unable to complete the full Whipple. The news was devastating to all of us. I spent a week in the hospital, then at home I needed to heal for eight more weeks to get stronger for the next phase of my treatment.
Since the Whipple couldn’t be completed as we had planned, the new strategy was for me to start a 5FU chemotherapy regimen, in hopes of shrinking the tumor so I could return to surgery. A port was placed in my chest to pump the chemotherapy around the clock for several days at a time. The routine alternated one week on treatment and one week off. This regimen was followed by a treatment to help replenish the white blood cells depleted by chemotherapy—a process that was completely debilitating and worse than the chemotherapy itself.
For the first six months following my diagnosis, every day I woke up I was hoping this was just a nightmare. As I moved in my bed, I would feel the tug of the port in my chest attached to the chemotherapy bag, and my heart would sink as I was reminded of the harsh reality of what my life had become. In my waking hours, I refused to own the disease; I never referred to it as “my cancer.”
After three rounds of the 5FU regimen, the tumor markers began to steadily decline. I continued treatment with 11 grueling rounds of chemotherapy. My oncologist made it clear that it was rare to make it back to surgery, but we were going to hope for the best. Fortunately, I was one of a very lucky few who qualified to return to surgery, which can provide the best chance for long-term survival. Again I chose to focus mentally on “killing the monster,” as I called the disease, and on meeting my grandchild. In January 2019, I underwent a successful Whipple procedure. This second chance at life powered my recuperation, and each day I became slightly stronger. My prayers for a recovery were answered!
I don’t care about the damage that came along with receiving aggressive treatment or the side effects including neuropathy and what we call “chemo brain,” because I’m alive, and that’s all that matters! I became a grandmother to my first grandchild, Jake Matthew, and most recently to his brother, Luke John. I now look healthy and have thankfully gained back the 20-plus pounds I lost during treatment. I reclaimed my independence, and eight months after surgery I returned to work full time as a teacher. CrossFit Gotham has been critical in helping me get stronger both physically and mentally, and in helping me cope with the “scanxiety” I, like many survivors, feel leading up to our next scans. I’m beyond grateful my latest scan showed no evidence of disease (NED). There are no words to fully describe the gratitude I have for my family, friends and the teams of doctors and other medical professionals who have taken such great care of me and nurtured me throughout this journey.
This cancer experience has taught me many things including to never lose sight of what a blessing it is for me to have survived this disease. I will forever be grateful I didn’t go anywhere, that I am here for my beautiful family and grandchildren and am ready to experience all of life’s milestones. Surviving has not only made me appreciate my family and friends even more and strengthened our relationships, but it also has inspired my friends and family members to savor every moment of their own lives and the lives of their loved ones. Moreover, having had cancer has taught me no one is guaranteed their tomorrow. My advice is to continue to make the best of what you have because it could always be worse, even after a diagnosis as devastating as pancreatic cancer.
I’m well aware that many patients’ pancreatic cancer journeys don’t evolve as mine has. I know there are too many tragic endings for pancreatic cancer patients and families. To ensure more patients become survivors like me, I support the Lustgarten Foundation’s mission to find a cure. I donated to the Foundation’s recent New York Virtual Pancreatic Cancer Research Walk because I believe funding research is the best way we can stop this disease from ravaging families and destroying lives. There’s nothing more priceless than giving people more time to live, and to have a good quality of life—as a Stage IV pancreatic cancer patient, I experienced that firsthand. Now, I have a duty and a calling to share my message of hope with other patients and families and to let them know second chances for pancreatic cancer surgery are possible, and our community of survivors is growing. I’m living proof that you should NEVER EVER GIVE UP (NEGU)!
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.
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.