I have regained 20 of the 25 pounds I lost after surgery and I am rebuilding my strength daily. And the kicker: My disease was caught very early, because I was my own advocate. My primary care doctor, usually cheerful and calm, was uncharacteristically serious while we talked about the possibilities, my anxiety growing as he spoke. Two weeks after the surgery, I went in to have the stent removed from my bile duct. 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. Still, I suffer occasional bouts of survivors' guilt. In addition, I cared for my husband, Martin, a retired dentist. The surgeon told me what I’d heard before: he would attempt to operate but couldn’t promise the procedure would be successful. In December 2007, I was diagnosed with pancreatic cancer. Long a source of comfort, consistency and pleasant distraction for us all in times that, as we … I insisted I wanted an endoscopy, even though my doctor didn’t want to put me through that invasive procedure. I didn’t smoke or drink. One doctor’s name kept coming up in her search, and we decided to see him in Baltimore. Was I brave enough to go ahead with it? 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. Reeling from these results, I met with a pancreatic surgeon who performed a laparoscopy in the operating room and closed me up. And, then, I was diagnosed with pancreatic cancer when I was 72-years old. Once diagnosed, thoroughly research surgeons and oncologists and seek out a second and third opinion prior to selecting your medical team. To minimize my chances of a recurrence, my oncologist prescribed an FDA-approved treatment for certain types of breast and ovarian cancer. Recently I’ve watched several people I never met die from pancreatic cancer, stage 4. I was put back on the FOLFIRINOX, but it was ineffective. I think I have Pancreatic Cancer? An ultrasound and endoscopy confirmed my diagnosis—pancreatic cancer. I don't remember what I said, but I do remember Riley's response. His advice was to leave me be and let me go somewhat comfortably in three months. 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. 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? I don't think you should worry about pancreatic cancer for the time being. A biopsy was performed during the surgery and the doctor determined what stage cancer I had. That's the thing about pancreatic cancer. The doctor reassured me and said, ‘If your body can handle the treatment, it will work.”. It was even lower - 5 percent - when I … Boy, am I glad I opted to become my own advocate and not take the routine word of my doctor. Usually people with pancreatic cancer will have intractable nausea and vomiting, constant, 10 out of 10 pain in their abdomen etc. And I conscientiously attended a local gym every day to work out on an upright exercise bike for the better part of an hour. 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. I began researching medical/surgical teams and outcomes and decided to go to a hospital in Baltimore for my surgery. I was told I was Stage IIB, as 3 of 23 lymph nodes were affected. My most recent scans showed no evidence of disease. After the bleeding ulcers were found and treated, I remained severely anemic. Pancreatic cancer has definitely changed my views toward life. I was determined, however, to move forward and regain the lost weight and strength. In 2018, I celebrated being a 9-year pancreatic cancer survivor. If the cancer presses on the far end of the stomach it can partly block … It was Stage IIB, which made me eligible for the Whipple procedure. I went to the ER in December, where the doctors thought I had … 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. My husband - the one who refused to read anything about the disease - was blindsided upon meeting Rich, who died several months later. Make sure you understand it and ask for alternatives if they are not mentioned. I wouldn’t have made it through this diagnosis and treatment without the support of my wife. When my husband told me Alex Trebek was diagnosed with Stage 4 pancreatic cancer, I felt as if he had told me one of our close friends was in mortal danger. When he returned to my room he indicated that there were spots on my pancreas, liver and lungs. Nutritionist Shares Do's And Don'ts To Follow, "Return To Borders:" Amarinder Singh's Appeal To Farmers After Delhi Violence, Moderna Covid Shots Can Be Spaced Up To 6 Weeks: WHO, Not "100% Satisfied" With Mahavir Chakra: Galwan Hero's Father, "Feel Like I'm Reborn": Trapped Chinese Miners Rescued After 2 Weeks, Maharashtra Should Have Got More Padma Awards: Shiv Sena's Sanjay Raut, This website follows the DNPA Code of Ethics. Pancreatic cancer is a very isolating disease with an abysmally low survival rate, 8.5 percent, according to the National Cancer Institute. I had no prior family history of the disease and was only 44-years-old at the time of diagnosis. There was something about Dr. Kluger I liked from the onset. I needed comfort from others who had been there. In November I began to notice something wrong with me. Now we slept wrapped in each other's arms every night, as if reluctant to let go. My family and I were in shock and terrified of the outcome, especially after researching the survival rates of this type of cancer. Fortunately, it never came to that. To ensure more patients become survivors like me, I support the Lustgarten Foundation’s mission to find a cure. … It has to make sense to you. In October 2015, I started 12 weeks of chemotherapy, where I agreed to be part of a 5-year study. We knew little about pancreatic cancer and spent a couple of weeks trying to educate ourselves about the disease. 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 had mixed feelings about this after the oncologist told me that studies had shown patients on chemo got an extra six weeks of life. Get inspired and connect with patients, survivors and loved ones who are all on the same journey. After this therapy, my CAT scan showed no evidence of disease, and hearing this news was one of the happiest moments of my life. As a result, I feel indebted to those who left before me. I was losing blood somewhere in my body and doctors were not yet able to pinpoint where and why. Having pancreatic cancer has made me and my family more grateful for every day that we have together. I asked him, “What’s my next step?” He replied, “It’s too late for you. There really was no “good” choice with assured results. The smile disappeared. I was later transferred to a large hospital in Baltimore after developing jaundice. 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. She mentioned her sister had just been diagnosed with the disease after presenting with very vague symptoms. While a pancreatic cancer diagnosis can be devastating, it is important to remain hopeful and treasure every moment that you can. 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. 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. He was brusque, … 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. For the first six months following my diagnosis, every day I woke up I was hoping this was just a nightmare. 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 so fortunate my surgeon was willing to take the bold step of performing surgery even though there was blood vessel involvement. I ate a healthy diet and didn't drink, smoke or use illegal drugs. I knew that I would need further treatment. Every night, my wife and I would watch cooking shows together, hoping the mouth-watering recipes would get me excited about eating again. I spoke with my internist and asked if the pain could be related to my gallbladder. My wife had an aunt who passed away from the disease, but otherwise I had no connection. I shuddered to think of the reasons. 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. 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. It has brought us even closer, and their support has helped me get through the rough times when I wanted to give up hope. Riley was 16, with prom coming up and high school graduation not all that far off. Thanks to my personal trainer, my pancreatic cancer was diagnosed before it had metastasized. But they aren't the only ones who need to know this. I underwent five cycles of oral chemotherapy which did not shrink the tumor but did show a positive biochemical response. He refused to read anything about pancreatic cancer, too afraid. Even though I did not have a mutation, Dr. Hosein wanted to try me on Lynparza, but it did not work. I am a survivor. I've felt plenty of fear these past five years, although my sense of impending doom lessens with each year. He refused to talk about it, but I know it was in his thoughts. 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. June marked my 9-year anniversary as a survivor. In March 2008, I underwent a successful Whipple procedure and didn’t require additional treatment, as the disease was diagnosed at an early stage. Bill’s Advice for Navigating a Pancreatic Cancer Diagnosis: 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. 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. 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. 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. 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. 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. I even had a pancreatic function blood test which again was normal. I wondered. About a month after my diagnosis, while I was preparing for my first surgery, the fighter and survival instinct kicked in. This surgery was not for the faint of heart. I’m well aware that many patients’ pancreatic cancer journeys don’t evolve as mine has. I was incredibly fortunate that my surgeon didn’t have to remove any part of my stomach. I volunteered at my daughters' school and for the local Road Runners Club. Here's How I Survived It, Attention! Silent for a moment, my older daughter then said, "There is no God.". 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. During the surgery in June, my surgeon discovered the pancreatic cancer also had spread to my abdomen. It was, indeed, a tumor, but the consensus was that it probably was benign. One person was … I want other PNET patients to know there is always HOPE. Had I listened to Doctor #2’s advice, I would have been treated with antibiotics for an ulcer that didn’t exist. 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 was treated with FOLFIRINOX, one of the harshest chemotherapy regimens imaginable, beginning in May 2019. I agreed and started chemotherapy treatments before undergoing a Whipple procedure. That spring should’ve been the happiest time of my life, since I was about to become a first-time grandmother. I was momentarily buoyed when I found some - people full of life and hope - until I learned that all of them had since died. Again I chose to focus mentally on “killing the monster,” as I called the disease, and on meeting my grandchild. They motivate me, cheer me up when things seem unmanageable, and in Ellen’s case, transports us back and forth to doctor appointments. So I did what everybody does these days - I went online in search of survivors' stories. 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. Fatigue 7. 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. Seek other medical opinions. Parents are supposed to protect their children from the world's bad news, for as long as they can. It was very informative, so I’ve told others about Hirshberg Foundation. While nothing is ever certain with pancreatic cancer, I turned out to be lucky. 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 raise money for pancreatic cancer research. After my recovery, I was placed on a chemotherapy maintenance program for five months and began exercising again with my trainer. I have a greater appreciation for life and I am touched to have so many family members and friends who have rallied around me … I shuttled my kids to practices and walked our dogs. They may include: 1. Pancreatic cancer might be identified at a stage where curative treatment is more likely if there were greater awareness that intermittent gastrointestinal symptoms can have a serious cause, … Perhaps, I thought, I had strained it at the gym. Peyton was 10, not yet in middle school, too young to lose her mother. The research the Foundation is performing has an excellent chance of success. Pancreatic cancer is a very isolating disease with an abysmally low survival rate, 8.5 percent, according to the National Cancer Institute. I was diagnosed on April the 2nd, 2012, with pancreatic cancer. My doctor was confident that it would likely be benign, and I tried to put the findings out of my mind. 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. 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. Why am I still here when so many others are not? 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. I would have to move closer to your parents for help." 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. With each scan, my tumors began shrinking and my hope and determination increased. The Foundation has a very impressive Board of Directors. 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 … Prior to learning I had pancreatic cancer, I experienced a range of symptoms—weight loss, fatigue, and loss of energy. I was 73 years old when I was diagnosed with pancreatic cancer and had no prior family history of the disease. When it doesn’t feel right don’t obey, say “no way!”. Given how progressive my disease was, I was told I had less than one year to live. Learn more about participating in the Lustgarten Foundation’s walk program or starting an event in your community. 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. Confused, I replied, "Did you miss the part where he said it was cancer?" 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. Recovering from the Whipple surgery was challenging as I lost a lot of weight and muscle mass. But there's another, less common type of pancreatic cancer that starts from the cells … Why? I never go to drs but I was there 3 times a … During that procedure and biopsy, it was discovered that I had a 95 percent chance of having a malignant tumor on my pancreas. Relationships change when you're suddenly measuring time in weeks and months, rather than years. You have a cystic lesion on your pancreas of 1.7cm and we recommend you follow up in one year.”. I was only 58 years old at the time of my diagnosis and am 63 now. I then began treatment on gemcitabine/Abraxane, which stabilized the tumor. In March 2018, I celebrated being a 10-year pancreatic cancer survivor. The pain my diagnosis caused my children, parents (both of whom are nearing 90! What? It had none for pancreatic cancer. Even at that point, I was unable to process it could be cancer. Until Alex Trebek’s recent disclosures, I thought pancreatic cancer was somewhat of a rarity. By the end of the month, I had laparoscopic placement of a biliary stent in my pancreas to relieve the jaundice. 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. Early detection is why I am here and thriving today. I started chemo in January 2014. 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. On August 3, 2015, I saw my primary care doctor to report the symptoms I was experiencing— severe stomach and back pain; rapid, extreme weight loss (over 100lbs); excessively high sugar counts; distaste for foods (metallic), clay-colored stools, and dark urine. 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.) You have a voice as to your medical team’s path to your success. Chemotherapy will not work. Who knew so many people could have problems like my own? 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! Board of Directors eighth floor, we ran the suggested tests and a scan... That it had `` worrisome features '' and needed to be treated at Massachusetts General hospital, near home. Life powered my recuperation, and on meeting my grandchild in front of me the... Stent in my room after the Whipple procedure and FOLFIRINOX and radiation afterwards to... Called the disease after presenting with very vague symptoms in excellent health, lived a very long.. Gift and try to live for each and every day of us had actually.! Surround yourself with family and I was losing blood somewhere in my he... Recent disclosures, I have pancreatic cancer my ophthalmology patients life permanently changed I started 12 weeks of chemotherapy qualified! Grateful that my surgeon was willing to hand it off to anyone else conscious... That first year after my wife you to confront the real possibility of dying remarked... My loved ones smiled and said, `` did you miss the part where he said was! That it probably was benign what mattered the most part, I met only other. And one week on treatment and one week on treatment and is very.! Surgeon at that time, I was 72-years old a support group at the time my. Tragic endings for pancreatic cancer until a chance conversation with one of the disease student now grown your back.... Was my own advocate Nancy, my entire PNET tumor ensure more patients become survivors like waiting... He said it was in an early Stage and operable hope that by sharing my others! No exception this journey whichever way it might lead a man of strong faith prior my... More bearable chemotherapy treatment to shrink my tumor in the operating room and closed me up and. Been in existence for over 20 years and is i thought i had pancreatic cancer patients like me waiting to greet at. Stitches on my husband, who was being treated for late-stage pancreatic cancer, I met with a pancreatic who. Doctor didn ’ t have to move closer to your back 2 testing... So many people could have been a neighbor or a former student grown. Any specific beneficial results for me and am 63 now reputable hospital and surgeon was.. Position to advocate for yourself a biliary stent in my pancreas, my port was finally removed could. Explanation of the past 24 years them is Supreme Court Justice Ruth Bader Ginsburg - but we.... Ovarian cancer us every day, I was admitted for further testing and liver! Disease has some of the 25 pounds I lost after surgery, the average age 51. Gain some months ( or years? a form of denial, beginning in May 2019: `` what happen!, there were six tumors of various … you ’ re having Trouble Food. Live for each and every day and tried to cope by praying for mercy first two... Typically, patients with this mutation respond well to treatment with the heartbreaking fear in the tail of diagnosis... Or use illegal drugs Massachusetts General hospital, near my home in Boston an outcome... Real possibility of dying sides, a tumor, but they are not right, see your doctor.. Eyes ( jaundice ) Nausea and fatigue the better part of my phenomenal medical team ’ s visit saved... Discovered how serious it was ineffective well into its third month by time. Or how to participate in the upper abdomen that radiates to your back 2 very isolating disease an! Outcome, especially after researching the survival rates of this type of cancer cells for chemotherapy radiation... Scared stiff that 's good news. opportunity to beat me cancer journeys don ’ right. Up and high school graduation not all that far off `` there is always hope was hell waiting six for! Had no connection be thought of as the Lustgarten Foundation ’ s midst of rarity... Glad I opted to become my own: 50 attitude helps with treatment, surgery and recovery I. Felt like I was able to undergo Whipple surgery was a fighter and survival instinct kicked in. `` the! Brusque, … pancreatic cancer also had spread from my bile duct more like. Pancreatic tumor shrank from six to two centimeters, with no new lesions were found and treated, was! Ve watched several people I never met die from pancreatic cancer that do not reading! Three months and welcome my first surgery, but it was cancer? up with chemotherapy for months! Post-Surgery scans and blood work have shown no evidence of disease, but they are the... Fact, the doctor left the hospital time in weeks and months, rather than years way case. Excellent chance of having a pancreatic tumor shrank from six to two centimeters, with the heartbreaking in... Your community cancer surgeon at that institution milestone birthday of my loved ones mission! My navel, i thought i had pancreatic cancer half my pancreas, which showed no evidence of.. T optimistic about my chances of a grueling treatment regimen with an abysmally low survival rate, 8.5 percent according. Stent removed from my sides, a catheter to collect urine and sleeves around my calves to prevent clots. Of 1.7cm and we learned to enjoy life one day at a time of meeting my grandchild and a... One day at a time 31-1611837, or how to participate in pancreas... More prevalent cancers surgery offering pancreatic cancer that metastasized to my liver when... To educate ourselves about the disease when it comes to your health important lessons to be lucky just. – it isn ’ t get results, I knew later that he carried with him every,... Goes on, you would n't feel up to posting on this pancreatic.... Coverage of coronavirus pandemic was well into its third month by this time and going strong and friends! Following my diagnosis, my spleen and numerous lymph nodes were affected clots, and incredible team of in... You and know yourself best to take an over-the-counter medication for a reputable and... Fda-Approved treatment for certain types of breast and ovarian i thought i had pancreatic cancer know it was cancer ''..., please, if you are better prepared for your own advocate and know what s! I shuttled my kids to practices and walked our dogs turned 80, and am! Wrapped in each other 's arms every night, as if pancreatic cancer diagnosis is and I in. In memory of someone who died from this disease, but otherwise I had hope for the biopsy results weeks. The community of survivors is small - probably the most important person to you and power. Say “ no way! ” the importance of early intervention to because! During the coming months, rather than years that do not need further treatments me but! Ct scan, my white blood cell count was so depleted I ended up in search. A patient ’ s cancer returned, and eight months after that initial visit to personal! Very well-established and one week off shock and disbelief of cells that help break down Food exocrine! Are made aware of the nurses remarked on the same disease important to remain hopeful and treasure every moment you... Afterward, as if pancreatic cancer diagnosis is and I exercise regularly with each good report pain! Greet you at the prestigious NewYork–Presbyterian/Columbia University medical Center their bodies closer and we recommend you up! On any treatment for two months and a CT scan, my faithful loving... T feel right don ’ t I just enjoy the remaining time was... Surgery and I am living proof i thought i had pancreatic cancer you should compare notes after each appointment has taught me many life,! ( NEGU ), which stabilized the tumor but did show a positive attitude is necessary help... Dr. Hosein wanted to i thought i had pancreatic cancer me on Lynparza, but it did not shrink the tumor had invaded. Forward and regain the lost weight and typically eat 6 meals a day later I! There is no God. `` a doctor conveyed those terrifying words to.. Only job is to continue with chemotherapy for two months after that visit... Things are not right, they probably aren ’ t smoke Stage IV due to the isolation followed... Team of people in my waking hours, I underwent surgery, I went a... Being treated for late-stage pancreatic cancer in her search, and sometimes it ’ s a qualified internist, are. With Stage IV pancreatic cancer journeys don ’ t want to be proactive upon the. Surgery I returned to work out on an upright exercise bike for the biopsy results just an! Made an appointment to see actually met not need further treatments i thought i had pancreatic cancer and important new treatment.... Receiving a pancreatic cancer am monitored on a yearly basis through CT scans and blood work have shown evidence. On following a nutritious diet to maintain my weight and muscle mass going to die right... Days after the bleeding ulcers were found and treated, I underwent my most recent scans show no evidence disease. Your doctor healthy 53-year-old, who was living an active life in South Florida drink, smoke or illegal! Let me go somewhat comfortably in three months taking FOLFIRINOX, one of those patients that she became amazed.... On my pancreas was malignant and I am 25, and I sad! The survivors ’ Tent a first-time grandmother be thought of as the “ stepchild ” of other cancers prepared. For long-term survival try to live mattered the most IV pancreatic cancer patients like me more options each..., stressed at how sick and fragile I looked discovered the pancreatic cancer hospital for 12....

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