Since our inception, we have been committed to changing patient outcomes with the singular goal of turning patients into survivors. These survivors are just a few of the many that inspire us every day. Send your story to us at info lustgarten.
In Junewhen I was just 43, I was diagnosed with a pancreatic neuroendocrine tumor PNETa 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 MarchI 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. I was losing blood somewhere in my body and doctors were not yet able to pinpoint where and why.
Then, in the spring ofafter 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.
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. Additionally, my surgeon removed 75 percent of my pancreas, my gallbladder and parts of the small bile ductstomach 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.We know that this is an especially worrying time for people with cancer and their family and friends.
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Read about coronavirus and cancer. Hi everyone, I am new here and feel I need to share my story with you all. My husband turned 51 this year and was a fit and healthy man, never smoked or drank.
Went to the gym regularly and did the London to Brighton bike ride last for his 50th. He started to feel a little unwell feeling full quickly after eating at the end of June.
Went to the doctors and they gave him some gastric reflux tablets. We had been together 31 years. I had never dealt with cancer in the family and have found his death very difficult as he had very few symptoms before this diagnosis and we had no time to come to terms with it, only 2 weeks from being diagnosed to his passing.
I am missing him terribly and not sure if I will ever come to terms with my loss. Hi Debbie. I am so sorry for your loss. I just read your story and had to reply.
In April of this year I lost my mum to this awful disease in an almost identical way. She had liver stents fitted 5 days later and a biopsy taken which confirmed the diagnosis and she suddenly took a turn for the worse. Less than 3 weeks later she was gone. She was also young at 54 and had always lived a healthy active lifestyle. Me and my family were shell shocked and still are now almost 5 months later.
I know losing a partner is different to losing a mother but our stories are so similar, I am always here if you want to reach out to someone to talk. Take care x. Hi Sunsetdriver, thank you so much for your reply, firstly I would like to say so sorry for the loss of your Mum.
I also lost my Mum and Dad in their very early 60s, and I do know how you are feeling. You lean on your parents all your life and when they are not there you feel like a lost child.
After reading your post it has reassured me that my husband was not the only one to have suffered such a quick and terminal cancer. I never knew much about pancreatic cancer before his passing, and now all I seem to do is read about the symptoms and treatments, wishing he could have had more time and options. It was a terrible time watching my husband who enjoyed his food not be able to even hold water down!Helping more people survive cancer is the aim of everything we do.
Read stories from people who have been affected by pancreatic cancer, and how research has made a difference to them.
The Pancreas Center
Retired lab manager Peter Breaden, who lives in Southport, was diagnosed with pancreatic cancer in He took part in ESPAC-4, a Cancer Research UK-funded clinical trial that has led to a call for a new standard treatment for people with pancreatic cancer who have had surgery. Karen from West Yorkshire was diagnosed with pancreatic cancer in The odds were not great, but this month I reached eight years, thanks to the amazing team that looked after me.
I've been lucky. I have two little grandsons now who I never thought I would see. From studying the biology of pancreatic cancer cells in the lab to leading clinical trials testing cutting-edge treatments, our researchers are working hard to ensure more people survive pancreatic cancer. Skip to main content. Pancreatic cancer patient stories. Donate now and together we can save more lives by beating cancer sooner. Donate now. Stories from pancreatic cancer patients Helping more people survive cancer is the aim of everything we do.
Patients' stories. A new standard treatment. Beating the odds. Further information Want to find more information about our research or pancreatic cancer? Discover more about research happening near you.Pancreatic Cancer Patient Story: Debra Hanton
Find out more about clinical trials. More about the symptoms and treatments for pancreatic cancer. Current research.
Real life stories
Find out more about our current research. Past research. Thanks to research, we've helped change the outlook for people with pancreatic cancer. Find out more about past research. Explore our timeline of research into pancreatic cancer. Thank you! We've recently made some changes to the site, tell us what you think. Leave this field blank.I was 55 years old and in terrific physical shape before I was told I had pancreatic cancer.
Exercise was an integral part of my daily routine, as was being religious about my diet and medical check-ups. As avid outdoor enthusiasts, my husband and I would ride mile bike races, ski all winter long, enjoy high-altitude hiking and more. My pancreatic cancer story started when I suddenly experienced a very sharp, intense lightning bolt of pain throughout my entire body — almost as if a sword was being driven through me. The pain lasted only about five seconds except for a small, lingering ache in the lower right side of my back, and I dismissed it.
Five days later, the nagging pain in my back was continuing and I immediately went to see a doctor. I had a healthy appetite, but was losing weight. I returned for more X-rays and blood tests when the pain did not cease. I learned that I had a bleeding ulcer, but after one month of antibiotics the back pain was still there. I begged my internist for more tests, not even sure what they should be. I barely knew what a pancreas did and certainly did not know about the duodenum the first section of the small intestinewhere the cancer had spread, in addition to spreading to some lymph nodes.
Shocked at my diagnosis, I asked my doctor what I could have done differently. Then after a few days I had a Whipple procedurethe most commonly performed surgery to remove tumors in the pancreas. Two months later I started aggressive chemotherapy treatment, which I remained on for three years. I lost my eyebrows, eyelashes and hair — twice. I have had eight toe and foot infections, constant pain in my feet and hands, eye infections, and skin rashes.
The inside of my mouth sometimes feels like someone took a blowtorch to it, and the skin on my lips has burned so much that washing my face was a painful experience. Stomach pains led me to take pain pills, my scalp hurt as if I had a tight tourniquet around it, and every joint hurt so much that any movement was a monumental effort. Something we take for granted — breathing — was a painful effort due to a lung infection This was my new life — a new normal.
Three-and-a-half years ago I was told that chemo was no longer effective — that I was terminal and had four to six months to live. I could not accept this. I would seek other opportunities and fight this. I had 12 liver biopsies and learned I had a serious liver infection; it was a gamble whether it could be cured.
For this, I was on an IV twice a day, 90 minutes each time, for a month. They wanted to administer this in a hospital twice a day and when I asked for another option since I would be traveling, they suggested a nurse could come to me twice a day. But this meant I couldn't leave town, so I asked the doctor if I could administer the medication myself. I learned, and proceeded with my trips. One morning in Colorado, I wanted to go on an early bike ride but my IV was still going. I packed everything up and put it in my fanny pack while my husband and I rode up a canyon.
When the IV stopped, I found two bear proof containers on the side of the road; pulled out my towel, syringes, and alcohol swabs; disconnected the tubes and flushed with the appropriate drugs; and off we went. I felt I was responsible, careful and most importantly, living my life.
Now, as an eight-year pancreatic cancer survivor, a big part of my life has been supporting the pancreatic cancer community as an advocate, volunteer, philanthropist, and board chair for the Pancreatic Cancer Action Network. I have participated in several inspirational PurpleStride 5K fundraising events across the country. I am lucky that my husband and I had the opportunity to fund two research grants through the organization.In this section you will find real life stories from people affected by pancreatic cancer.
These stories provide examples of how people are diagnosed, the treatment they have, their experiences and how they take care of themselves. Everyone diagnosed with pancreatic cancer will be different in terms of how they received their diagnosis and how they respond to and cope with treatment. Please be aware that these stories are not necessarily typical of most people with pancreatic cancer in terms of age, types of pancreatic cancer or treatment.
We hope they will provide some inspiration and hope, and that the experiences shared are helpful to you. Sadly, some people who have provided their stories do pass away. You can read their stories in our In memory pages. Many of these people lived for many months or years after their diagnosis and had a variety of treatments. Their stories can still provide inspiration. The stories do not represent recommendations about treatment or care.
Talk to your medical team about your treatment options. The stories in these pages contain the views and opinions of the people who have written them, and do not necessarily reflect the views of Pancreatic Cancer UK. Menu Information and support Coronavirus COVID and pancreatic cancer Publications Just diagnosed Support for you Our discussion forum Facts about pancreatic cancer Treatments for pancreatic cancer Diet and pancreatic cancer Clinical trials Managing symptoms and side effects Living with pancreatic cancer End of life care for pancreatic cancer Real life stories Patient stories Carers Stories Share your story Useful medical words.
Real life stories. Patient stories Arrow Link. Carer's stories Arrow Link.Dale Haskell was diagnosed with ampullary pancreatic cancer in Decemberat the age of The tumor was 1.
He underwent the Whipple procedure in January Chemo was 5FU with radiation. His surgeon was Dr. Steve Vogel; his oncologist was Dr.
Robert Marsh. Dale and Karen live in the Gainesville, Florida area. At the time of diagnosis, they had been married 2 years and Karen, previously a widow, had adult children. Both were originally from New England, but met in Florida through their church. Their faith in Jesus Christ has been the cornerstone of their lives together, as well as of their journey with this disease.
Karen is on the administrative staff of the City of Gainesville. Dale is a senior biologist at the University of Florida. Dale is also a survivor of kidney cancer, basal cell skin cancer, and a prostate scare 50 biopsies, but no malignancy found.
None of these appears to be related to this particular illness. The pain from the second was so intense, it had me down on all fours. Stavros Diavolitsis, wanted to treat him aggressively. The next day, upon hearing of this, my gastroenterologist postponed the procedure. On Thanksgiving Day I could barely eat at all.
By Friday my urine was brown and my stools were white and I was jaundiced. I went to the ER and was admitted. Finally, the planned endoscopy occurred, revealing a tumor that had blocked the ampullary duct.
A stent was inserted, and a biopsy ultimately diagnosed malignant adenocarcinoma. Looking back then, Karen realized he had been losing weight — about 25 pounds. Speaking of awareness, neither now recalls being aware of the tough statistics surrounding this cancer — at least before the operation. He went straight to the Internet, began reading voraciously, and grew visibly depressed.
People were dying. Gainesville, home of the University of Florida, is a huge medical community with an abundance of superior health care facilities and professionals. His surgery was scheduled for January 7,a Monday. On the Friday before, Dale was admitted early, due to a bout of pancreatitis. Most Whipple patients report for surgery the morning of the event. But on this weekend, Dale was already in the hospital. On the eve of surgery, he and Karen do remember a joyous, boisterous funfest with another couple from church, game-playing out in the surgery floor lounge.
A nurse looked at them incredulously. Dale spent 18 days in the hospital. He was so happy that my situation had been operable.
Two of the four PC patients he had earlier mentioned to me had since succumbed. Before his release, Dale was visited by an oncologist.Jump to navigation. Learn about video visits here.
Ryan is a tough guy—a combat veteran and an NYPD cop. Once, on active duty, he had to have neck surgery without anesthesia. But, he says, that pain paled compared to his pancreatitis. May of was an exciting time for Tony Rafaniello.
Now retired as an assistant principal and basketball coach, Tony and his wife Dale were preparing for a trip to Italy and a cruise around the Isle of Sicily.
His mind often drifted to all he would do, see and eat in the weeks ahead. Two days before departure, he woke up with terrible stomach pain. Then, suddenly, he passed out. For the next ten days, he was unconscious, breathing with the aid of a ventilator.
Sylvia George was first diagnosed with advanced localized pancreatic cancer in May of It started with unexplained back pain, a vague symptom that led Sylvia to make an appointment with her GP. After a CT scan found a spot on her pancreas, the biopsy then confirmed the diagnosis. Since I was a child, I remember my parents bringing me to a series of doctors to try and find out the cause of my relentless abdominal pain.
Unfortunately, no doctor could accurately identify the condition that was causing my symptoms, thus prescribing me wrong and unnecessary medications. This situation went on for years. In Aprilafter symptoms of dark urine and a rash, Lucien Zito visited a surgeon who determined his symptoms were caused by a mass on his pancreas.
Thoughts of confusion and hopelessness overtook the Zito family. My story begins on October 9th, Born and raised in Brooklyn, New York, I had lived 29 years without any significant medical history besides a bout of childhood asthma. This procedure finally ended his attacks and gave him back his life.
Life can be snatched from you in an instant. A more diabolical way is to be told by your doctor that you have cancer.