I found leaning on family and friends and the power of prayer for support, to be very helpful during my diagnosis and treatment. I was shocked when I found out the tumor in the tail of my pancreas was malignant and I would need surgery. One of the nurses remarked on the unusual patterns of stitches on my abdomen. I began researching medical/surgical teams and outcomes and decided to go to a hospital in Baltimore for my surgery. Pancreatic cancer has definitely changed my views toward life. Even though my scans after the Whipple showed no evidence of disease, I still undergo routine scans each year. 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. 5. I wanted to continue to be the rock for my children and welcome my first grandchild into the world. My prayers for a recovery were answered! After eight months of taking FOLFIRINOX, I received the incredible news that I had no evidence of disease. Now, I am monitored on a yearly basis through CT scans and MRI’s. Speak to survivors directly to understand their experiences so you are better prepared for your own journey and can learn from their path. Why not? 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! Thanks to the support of my devoted family and the expertise of my phenomenal medical team, I was able to stay positive throughout. He and my mom were out shopping, and his reaction was calm, probably because he didn't want to share bad news with her in public. 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. Your only job is to focus on getting better and keeping a positive outlook. A successful Whipple surgery was conducted on August 14, 2017 and after six months of chemotherapy, I have been on the road to recovery. Dr. Kluger scheduled my surgery for January 14, 2020. Before starting chemo, I looked for a support group at the hospital. On that day, however, I was facing something far more frightening: my own mortality. So why, indeed, not me? However subsequent scans revealed the original cancer had … I became a grandmother to my first grandchild, Jake Matthew, and most recently to his brother, Luke John. 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. 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 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. After this therapy, my CAT scan showed no evidence of disease, and hearing this news was one of the happiest moments of my life. Even though I did not have a mutation, Dr. Hosein wanted to try me on Lynparza, but it did not work. 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.) In December 2007, I was diagnosed with pancreatic cancer. Pancreatic cancer is a very isolating disease with an abysmally low survival rate, 8.5 percent, according to the National Cancer Institute. Now we slept wrapped in each other's arms every night, as if reluctant to let go. The next day, I went back to have it biopsied. A day later, I underwent a CT scan, which confirmed a diagnosis of pancreatic cancer. 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’m 82 years old, I argued. You and the person accompanying you should compare notes after each appointment. What? Upon waking up from the port surgery, the doctor and his nurse walked into my room. Why? Send your story to us at info@lustgarten.org. Your slightly elevated CA 19-9 finding (you should post units of measure and lab range) is linked to many cancerous … I was a man of strong faith prior to my diagnosis and that helped me cope with what I was facing. One November day in 2013, I locked myself in my bathroom and started to sob, hoping my husband and daughters would not hear me. Today, I am a healthy 58-year-old who is living life to the fullest. Ironically, I broke the news to my father on his 72nd birthday. The oncologist took a biopsy of my tumor and discovered that the tumor had a BRCA2 mutation. Long a source of comfort, consistency and pleasant distraction for us all in times that, as we … The Foundation has a unique commitment to ensuring 100 percent of every donation goes directly to research. Marty, my faithful and loving husband of about 60 years, brought up the rear. 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. 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 returned to Albany, discouraged but willing to fight because my family needed me. We were incredibly frightened by the diagnosis and filled with immeasurable anxiety. I’ve modified my diet to maintain my weight and typically eat 6 meals a day, which includes a lot of buffets! I felt close to them because we all shared the same disease. I continued treatment with 11 grueling rounds of chemotherapy. I now look healthy and have thankfully gained back the 20-plus pounds I lost during treatment. Early in the morning on May 28th, I arrived at the surgery floor of NewYork–Presbyterian, scared stiff. I even had a pancreatic function blood test which again was normal. A few days after the surgery, I discovered how serious it was. With each scan, my tumors began shrinking and my hope and determination increased. Prior to learning I had pancreatic cancer, I experienced a range of symptoms—weight loss, fatigue, and loss of energy. Then, I survived a brain tumor. Never ignore your symptoms if they don’t disappear in the first couple of weeks. 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. 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. I’m living proof that you should NEVER EVER GIVE UP (NEGU)! Blood clots 6. 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. 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. Would it work? From the beginning, I was proactive and determined to control the direction of my own health. There were six tumors of various … 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. Pancreatic cancer has definitely changed my views toward life. 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. I am 25, and have had a high sugar diet for the past 24 years. Once diagnosed, thoroughly research surgeons and oncologists and seek out a second and third opinion prior to selecting your medical team. In November I began to notice something wrong with me. 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. In 2012, following a move to Florida, I started attending the Foundation’s annual Fort Myers Walk and have met more survivors each year. But they aren't the only ones who need to know this. Since our inception, we have been committed to changing patient outcomes with the singular goal of turning patients into survivors. 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. Typically, patients with this mutation respond well to treatment with the chemotherapy FOLFIRINOX, and subsequently, I received this potent therapy. We won’t stop until this page is filled with hundreds and then thousands of survivor stories. In 2015, I was diagnosed with Stage IV pancreatic cancer that metastasized to my liver, when I was only 44 years old. This treatment shrunk my tumor in half and I was able to undergo Whipple surgery five months later on October 2, 2019. The tumor had already invaded my duodenum, which is the first part of the small intestine that connects to the stomach. When a person first complains of symptoms that may indicate pancreatic cancer (see ‘Signs and symptoms of pancreatic cancer’) doctors usually order blood tests to examine liver function … Because it was discovered early, my tumor measured only 3 x 1 mm. In March 2012, I was a healthy 53-year-old, who was living an active life in South Florida. After learning the diagnosis, my wife and I felt like we were in the dark. Even if I could gain some months (or years?) Parents are supposed to protect their children from the world's bad news, for as long as they can. I am living proof you can survive a PNET diagnosis and treatment. Loss of appetite or unintended weight loss 3. Boy, am I glad I opted to become my own advocate and not take the routine word of my doctor. Despite my shock and fear over having a pancreatic tumor, I knew I had to face this diagnosis head-on. And in my case, dying young. 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. 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. I was petrified. I've felt plenty of fear these past five years, although my sense of impending doom lessens with each year. 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. I was very heavily medicated but thrilled to see them. The reason I asked you to do that is for me to determine why you think pancreatic cancer. While nothing is ever certain with pancreatic cancer, I turned out to be lucky. I have a family history of Diabetes. 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. 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. 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. 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. Here's How I Survived It, Attention! My cancer was locally advanced Stage III, but was inoperable due to the involvement of a blood vessel. 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. In our country, pancreatic cancer may be thought of as the “stepchild” of other cancers. I had some lower back pain, which I thought was due to driving, and had also lost my appetite. I had been asked to speak at the Pancreatic Cancer UK Annual … 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. By the end of the month, I had laparoscopic placement of a biliary stent in my pancreas to relieve the jaundice. Why had this happened? I am grateful that my gastroenterologist was thorough and was able to diagnosis the disease when it was in an early stage and operable. Hello to everyone on this pancreatic cancer board. Don’t get discouraged. 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. Yet in a few scant weeks, I went from running 100 miles at a time to using a walker to circle my hospital floor. 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. 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. I didn't want to be the reason they no longer felt safe. 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. Recovering from the Whipple surgery was challenging as I lost a lot of weight and muscle mass. Youthful, with a welcoming smile, he could have been a neighbor or a former student now grown. It was hell waiting six weeks for the biopsy results. My treatment plan included a successful Whipple procedure and FOLFIRINOX and radiation afterwards. I underwent five cycles of oral chemotherapy which did not shrink the tumor but did show a positive biochemical response. In November 2014, I underwent surgery, but it was unsuccessful due to the involvement of the blood vessel and was aborted. 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. Make sure you understand it and ask for alternatives if they are not mentioned. of added life, was it enough to justify the long months of post-operative recuperation time necessary? I even found myself thinking I should start scouting around for second-wife candidates for my husband, Steve, so he wouldn't be lonely after I was gone. I also had to prove my body was back, so in June 2015, I ran - and finished - the 100-mile Bryce Canyon Ultra Marathon. 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. 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. I think I have Pancreatic Cancer? When the doctor left the room, he smiled and said, "Well that's good news." Anyway, I think you shouldn'… Prior to this, I was experiencing urine discoloration but I thought this was caused by dehydration. They thought it might be a metastasis. after dinner when our daughters were young, and now my teenager revels in the opportunity to beat me. It was thrilling to tell my husband and my daughters - the older one now a college junior, the younger one a sophomore in high school. 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. I don't remember what I said, but I do remember Riley's response. In October 2015, I started 12 weeks of chemotherapy, where I agreed to be part of a 5-year study. Given the statistics, I was not optimistic, but my family tried to remain positive and encouraged me to undergo the Whipple procedure. I survived the Holocaust. At the time I was 73, in excellent health, lived a very active lifestyle and was not in any pain. Not unlike many newly diagnosed cancer patients, I was scared. And I conscientiously attended a local gym every day to work out on an upright exercise bike for the better part of an hour. Learn more about the Lustgarten Foundation’s research initiatives or how to participate in the Foundation’s walk program or start an event in your community. Relationships change when you're suddenly measuring time in weeks and months, rather than years. 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. As a result, I feel indebted to those who left before me. I began to feel as if pancreatic cancer patients were among the forgotten because almost everyone died. Above all, be your own advocate. I was 73 years old when I was diagnosed with pancreatic cancer and had no prior family history of the disease. I wanted to be the one to talk to them about relationships and careers. Your doctors are trying hard to do what’s best for you. 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. 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. Cancer tried to take my life, but instead it gave me a new purpose. 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. I had no family history of pancreatic cancer, never smoked, was not overweight, did not have diabetes, and was completely surprised by the news. Seek other medical opinions. My scan results showed my pancreatic tumor shrank from six to two centimeters, with no new lesions! On April 21, 2019, during my routine training session at the gym, my trainer noticed I looked jaundiced and recommended I see a doctor. 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. The official diagnosis came in October 2014—pancreatic adenocarcinoma at the age of 51. 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. Reluctantly, she performed the endoscopy, which actually showed a tumor in the pancreas. It was even lower - 5 percent - when I … 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. His announcement devastated me, not only because I admire him but because it brought back all the feelings from my own diagnosis five years ago. I had the Whipple surgery on November 11, 2019 to remove my entire PNET tumor. I wouldn’t have made it through this diagnosis and treatment without the support of my wife. 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. That first year after my diagnosis, all I wanted to do was spend time with my family and closest friends. I underwent the only potential “cure,” a surgical procedure known as the Whipple, and my surgery was a success. I was walking at a healthy, energetic clip, limited only by the surge of pedestrians in front of me doing the same. Who knew so many people could have problems like my own? You might not be reading this story right now. ), siblings and friends was unbearable to see. Moreover, having had cancer has taught me no one is guaranteed their tomorrow. I knew I was in the right place. I agreed and started chemotherapy treatments before undergoing a Whipple procedure. 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