If the cancer presses on the far end of the stomach it can partly block … If you are properly armed with the knowledge available you’re in a much better position to advocate for yourself. 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. Despite my shock and fear over having a pancreatic tumor, I knew I had to face this diagnosis head-on. I survived the Holocaust. I had drains emerging from my sides, a catheter to collect urine and sleeves around my calves to prevent blood clots. In March 2018, I celebrated being a 10-year pancreatic cancer survivor. The tumor had already invaded my duodenum, which is the first part of the small intestine that connects to the stomach. Speak to survivors directly to understand their experiences so you are better prepared for your own journey and can learn from their path. Today, the only thing I take is an enzyme with my meals to help with digestion. I made a conscious decision to block out the terrifying survival statistics and focus on my individual treatment and healing. 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. I share my story to inspire others and show them that they, too, can have a positive outcome. I was a man of strong faith prior to my diagnosis and that helped me cope with what I was facing. Experts are everywhere. Trust your instincts and go with them. In March 2008, I underwent a successful Whipple procedure and didn’t require additional treatment, as the disease was diagnosed at an early stage. However, I told my oncologist that I was a fighter and expected to be one of those patients that she became amazed by. 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. While a pancreatic cancer diagnosis can be devastating, it is important to remain hopeful and treasure every moment that you can. 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. Parents are supposed to protect their children from the world's bad news, for as long as they can. 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. 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. 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. 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. Anyway, I think you shouldn'… If you feel things are not right, they probably aren’t. We then depend on our grown children for major decisions. 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.) It has brought us even closer, and their support has helped me get through the rough times when I wanted to give up hope. https://www.webmd.com/cancer/ss/slideshow-celebrities-with-pancreatic-cancer 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. I try to live as independently as possible, have modified my diet to eat healthier, and I exercise regularly. You and the person accompanying you should compare notes after each appointment. I continued treatment with 11 grueling rounds of chemotherapy. 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. 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. Thoroughly research pancreatic cancer and develop questions to ask your medical team. I chose the date so it would not interfere with family birthdays - my older daughter's, my father's and my husband's. My treatment plan included a successful Whipple procedure and FOLFIRINOX and radiation afterwards. Recovering from the Whipple surgery was challenging as I lost a lot of weight and muscle mass. It was even lower - 5 percent - when I … Signs and symptoms of pancreatic cancer often don't occur until the disease is advanced. Loss of appetite or unintended weight loss 3. 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. Only 15-20% of patients are eligible for this surgery. From the beginning, I was proactive and determined to control the direction of my own health. Thanks to my personal trainer, my pancreatic cancer was diagnosed before it had metastasized. 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 had already been diagnosed as a pancreatic cancer patient, having just undergone an extensive series of diagnostic tests. 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. 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. … Additionally, my surgeon removed 75 percent of my pancreas, my gallbladder and parts of the small bile duct, stomach and small intestine. I’d been treated for breast cancer years earlier, but did not know at the time that I had the genetic abnormality known as BRCA 2. My plan is to continue with chemotherapy for two months as a preventative measure to ensure no cancer cells escaped during surgery. My most recent scan in June 2018 continued to show no evidence of disease. I am 25, and have had a high sugar diet for the past 24 years. Chemotherapy will not work. 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. It was very informative, so I’ve told others about Hirshberg Foundation. 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. What does that mean? Excess Body Weight May Lead To This Cancer, Type 2 Diabetes Linked To Increased Risk Of Pancreatic Cancer: 5 Diet Tips To Manage Diabetes, Type 2 Diabetes Can Increase Risk Of Pancreatic Cancer: Study; Risk Factors You Must Know, Many Stood Up As Ayodhya Ram Temple Model Passed By At R-Day Parade, Opinion: PM Modi Should Stand Firm Against Protesting Farmers, Stones Thrown At Red Fort As Police Try To Remove Farmers: 10 Points, 6 Effective Stretches That Can Help You Cool Down After A Workout, Are You Making These Salad Mistakes? Prior to this, I was experiencing urine discoloration but I thought this was caused by dehydration. etc. 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. I felt close to them because we all shared the same disease. Pancreatic cancer has definitely changed my views toward life. It has to make sense to you. I know there are too many tragic endings for pancreatic cancer patients and families. I was losing blood somewhere in my body and doctors were not yet able to pinpoint where and why. Send your story to us at info@lustgarten.org. I was very heavily medicated but thrilled to see them. I’m convinced the Foundation’s steadfast dedication to research will result in earlier detection and important new treatment options. I am a survivor. Luckily, they did not get hurt. Boy, am I glad I opted to become my own advocate and not take the routine word of my doctor. Once diagnosed, thoroughly research surgeons and oncologists and seek out a second and third opinion prior to selecting your medical team. Your slightly elevated CA 19-9 finding (you should post units of measure and lab range) is linked to many cancerous … I never go to drs but I was there 3 times a … My tumor was found early. For the first six months following my diagnosis, every day I woke up I was hoping this was just a nightmare. I thought pancreatic cancer was about to win! A cancer diagnosis immediately makes “sweating the small stuff” a thing of the past. Even though my scans after the Whipple showed no evidence of disease, I still undergo routine scans each year. 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. Not unlike many newly diagnosed cancer patients, I was scared. About a month after my diagnosis, while I was preparing for my first surgery, the fighter and survival instinct kicked in. I went to the ER in December, where the doctors thought I had … 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. Five years later, I at last can say that I am one of them. My most recent scans show no evidence of disease. In October 2015, I started 12 weeks of chemotherapy, where I agreed to be part of a 5-year study. I am grateful to have the love and support of an amazing team of people in my corner. Loss of appetite, indigestion and nausea are common … I knew that I would need further treatment. Even though I did not have a mutation, Dr. Hosein wanted to try me on Lynparza, but it did not work. 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. Some at first couldn’t believe it. 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). 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. There are some important lessons to be learned from my experience: 1. We quickly dismissed the breathing issue after the radiologist found what looked like a "cyst" on my pancreas. Riley was 16, with prom coming up and high school graduation not all that far off. At that time, I was admitted for further testing and a liver biopsy later confirmed I had Stage IV inoperable pancreatic cancer. In that surreal moment, my entire life permanently changed. June marked my 9-year anniversary as a survivor. I had noticed I was always thirsty in January but thought nothing more since I was not overweight, never smoked and hardly drank. You have none of this. To ensure more patients become survivors like me, I support the Lustgarten Foundation’s mission to find a cure. However, I didn’t consider pancreatic cancer until a chance conversation with one of my ophthalmology patients. 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. 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. My most recent scans continue to show no evidence of disease. I wanted to continue to be the rock for my children and welcome my first grandchild into the world. 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 don't think you should worry about pancreatic cancer for the time being. Not surprisingly, this failed to comfort me. Marty, my faithful and loving husband of about 60 years, brought up the rear. We won’t stop until this page is filled with hundreds and then thousands of survivor stories. The official diagnosis came in October 2014—pancreatic adenocarcinoma at the age of 51. After eight months of taking FOLFIRINOX, I received the incredible news that I had no evidence of disease. 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. I spoke with my internist and asked if the pain could be related to my gallbladder. 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. Today, I am a healthy 58-year-old who is living life to the fullest. I don't want anyone else coping with this disease to feel as frightened and isolated as I did on that afternoon five years ago when I wept in my bathroom. 415 Crossways Park Drive, Suite D, Woodbury, NY 11797 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. Cancer tried to take my life, but instead it gave me a new purpose. Peyton was 10, not yet in middle school, too young to lose her mother. Recently I’ve watched several people I never met die from pancreatic cancer, stage 4. I'd always been so tough - running ultramarathons exposes you to a lot of pain - but getting through chemotherapy taught me it wasn't always possible - and that I needed to be gentler on myself. The Benefit of Being Your Own Advocate“Yes, I’m calling with your CAT scan results. Something about our conversation unnerved me, and I asked my doctor to order a CAT scan of my pancreas. Perhaps, I thought, I had strained it at the gym. I am getting worried and am scared to go to the doctor to find out I have pancreatic cancer… A few days after the surgery, I discovered how serious it was. We were incredibly frightened by the diagnosis and filled with immeasurable anxiety. Pancreatic cancer has the lowest survival rate of all the 21 common cancers but, despite this, has received only one per cent of the cancer research budget over the last decade. My husband - the one who refused to read anything about the disease - was blindsided upon meeting Rich, who died several months later. His wife wanted me to have a lighter that he carried with him every day, even though he didn’t smoke. 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. 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. My prayers for a recovery were answered! 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. 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. The doctor reassured me and said, ‘If your body can handle the treatment, it will work.”. I was petrified. Families can be very persuasive, and mine was no exception. I would first need two months of chemotherapy—which turned out to be three months—to shrink the tumor before surgery could be attempted. This is a complicated, lengthy surgery offering pancreatic cancer patients like me the best chance for long-term survival. 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. Yellowing of your skin and the whites of your eyes (jaundice) Your doctors are trying hard to do what’s best for you. I Had Pancreatic Cancer. In a few months, I will celebrate a major milestone: five years as a pancreatic cancer survivor. On April 21, 2019, during my routine training session at the gym, my trainer noticed I looked jaundiced and recommended I see a doctor. Last November, my doctor cleared me and told me I didn't need to come back. The doctor on staff ordered a CT Scan. Dr. Kluger scheduled my surgery for January 14, 2020. Thanks to the support of my devoted family and the expertise of my phenomenal medical team, I was able to stay positive throughout. 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 … I have a family history of Diabetes. It was soon joined by more intense pain in my back. It brought us even closer and we learned to enjoy life one day at a time. And, then, I was diagnosed with pancreatic cancer when I was 72-years old. That first year after my diagnosis, all I wanted to do was spend time with my family and closest friends. 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. S… I had no prior family history of the disease and was only 44-years-old at the time of diagnosis. 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