Nathalie’s Story: A Health Journey With A Happy Ending
Patient was diagnosed with adenocarcinoma of the duodenum over two years ago and had tumor removed at age 35. Interview was conducted 2+ years post-surgery.
Author: Gail S. Thornton, M.A.
Co-Editor: The VOICES of Patients, HealthCare Providers, Caregivers and Families: Personal Experience with Critical Care and Invasive Medical Procedures
Nathalie Monette of Laval, the third largest city in Quebec, Canada, counts her blessings each and every day. The 35-year-old is looking forward to making her mark on a bright and promising future as a newly married woman with a supportive family, new job as head of internal communications for a public service organization, and a new lease on life. Diagnosed a little over two years ago with a rare cancer called adenocarcinoma of the duodenum, Nathalie never envisioned that her life would take many twists and turns before she and her doctors arrived at an optimal treatment regimen.
Nathalie describes some of the classic warning signs she had for about six months before her actual medical diagnosis: abdominal cramping, nausea, vomiting, acid reflux and loss of weight.
“I felt sick all the time. I was losing weight and had pain in my upper abdomen after eating. My condition was getting worse with each week. My boyfriend, Jeff, at the time, who is now my husband, took me to several doctors who initially listened to my list of symptoms, examined me and told me to take antacids and avoid stress – and sent me home. It was increasingly becoming more difficult to manage my life, my relationships, and my job.”
The doctors in one hospital that she visited even considered she might be having a cardiovascular incident, since she was vomiting, was nauseous and had a stomach ache. Her blood levels were normal, which didn’t help the doctors, who, again, could find no serious health issue and sent her home.
Image SOURCE: Photographs courtesy of Nathalie Monette on the day of her wedding to Jeff. Top Left: Nathalie with her parents, Céline and Jean-Claude. Top Right: Nathalie with Jeff, and her two sisters, Julie and Marie-Claude. Below Right: Nathalie and Jeff.
For the next few weeks, Nathalie visited hospital after hospital in search of finding a more steadfast diagnosis of her condition – and a doctor who would listen to her and treat her symptoms.
“I was weak and vomiting. At this point, I kept losing weight — about 40 pounds in a total of six months.”
She decided to take the situation in her own hands and changed her diet, eliminating gluten, spices, and other major food groups. Nothing seemed to relieve her symptoms. She knew reading about possible medical conditions on the internet could cause additional stress. Having worked in the pharmaceutical industry, she was glad she knew where to look and what sources of information could be trusted.
Continued Search For Answers
“The medical system in Quebec is complicated,” she said. “In this public system, there is no family doctor assigned to you who follows your care year after year. And since I was perceived by the system as a young, relatively healthy woman, I was put on a waiting list for 3 to 4 years to be assigned to a general practitioner.”
Frustrated, hopeless and fearful for her health, Jeff got more involved in her diagnosis and took her to yet another hospital. Nathalie’s search took her from hospital to hospital and doctor to doctor with no known diagnosis.
“I was very angry, disappointed and at the end my rope. I just wanted to feel better and live my life.”
Then, one day, there was a ray of hope – and it took six months to find it. At a nearby hospital called Hôpital de St-Eustache where Jeff decided to take her, she came across two young physicians, Dr. Annie-Claude Bergeron, an emergency room doctor, and Dr. Marie-Hélène Gingras, a gastroenterologist, who happened to be Nathalie’s same age. Dr. Bergeron listened to her symptoms, examined her, and was determined to help her. A day later, Dr. Gingras ran several diagnostic tests, including an endoscopy and ultrasound, and more specialized blood tests.
“While undergoing the endoscopy, the doctor couldn’t find anything remarkable and was about to remove it. She decided to push the camera 5cm farther into my duodenum – and found the cause of my illness.”
Finally, Nathalie had definitive results. She had a 3½ cm (1.4 inches) tumor in her duodenum.
Dr. Gingras was devastated by the news she had to share. She called specialists in Montreal who would operate on Nathalie. Dr. Simon Turcotte, physician, hepatopancreatobiliary and liver transplantation expert who specializes in gastrointestinal cancer immunobiology and solid tumor immunotherapy, took her case.
“When Dr. Gingras told me about my condition, I was relieved and afraid at the same time. My heart sank when I got the news.”
Nathalie had a rare cancerous condition that only shows up in a handful of older people. It also was unusual that the tumor was situated in the duodenum rather than the colon, where most tumors of this variety normally occur. She also didn’t have history of that type of cancer in her family. She couldn’t even be tested for any genetic markers, since no genes have been identified as markers for this rare condition.
So, three weeks later, Nathalie was transferred to Hôpital Saint-Luc in Montreal, for a, hopefully, life-saving surgery. She had to trust her new expert, Dr. Turcotte, with her life.
“There was no room for error in removing the tumor. It was situated 1mm from my pancreas and every other vital organ I needed to survive.”
By nature, Nathalie is a strong, fiercely independent woman and there was no doubt she would come through the operation with flying colors.
About one month after surgery, she was scheduled for six months of chemotherapy to ensure that the cancer was eradicated. One day every two weeks, she received a powerful cocktail of Folfox (Leucovorin®, 5-FU, Adrucil® and Eloxatin®).
“Because of the chemotherapy, I had a minimal appetite, could not taste any food, could not drink or touch anything cold and needed to keep my weight at the same level.”
Her parents, Céline and Jean-Claude, two sisters, Julie and Marie-Claude, and Jeff, of course — were of great support and encouragement for her. Jeff insisted to meet with her nutritionist to determine a health plan so that she received the necessary nutrients in her food. Because Nathalie could not taste any food because of the chemotherapy, she tricked her mind by eating meals that she remembered from her childhood days. In that way, she was transported back in time mentally and she thought about the great food she had when she was growing up. Her parents were always on hand to cook these traditional meals that were filled with protein, spices, salt and fat to give her the added boost (and some taste) to help her system recover.
Duodenum, A Complex, Powerful Organ
Nathalie describes the duodenum as a complex organ – a C-shaped, hollow tube about 25-38 cm (10-15 inches) long, largely responsible for the enzymatic breakdown of food in the small intestine.
“This small but powerful organ is the shortest part of the small intestine which regulates the rate of how the stomach empties.”
According to the Inner Body web site, the duodenum receives partially digested food, called chyme, from the stomach and plays a vital role in the chemical digestion of chyme in preparation for absorption in the small intestine. Many chemical secretions from the pancreas, liver and gallbladder mix with the chyme in the duodenum to help chemical digestion. http://www.innerbody.com/image_dige02/dige21.html
Back to Normal
Nathalie’s life is back to normal, as much as it can be after such a medical ordeal.
“The past is just the past. I try not to think about the trauma that I’ve been through. I look forward as that is what is important.”
She got married last August (2015) to Jeff, who demonstrated his love to her the best way possible in caring for her throughout this ordeal. They met on the internet in 2010, at a moment when Nathalie wanted to leave the dating scene to focus on personal projects. They talked, met shortly after, and became great friends. Only a year later did Nathalie accept to be in a relationship with Jeff.
“About one week after my surgery when I was home, Jeff proposed marriage to me. I was visiting my family for Easter and Jeff had prepared everything. He had first asked my parents for my hand in marriage in the hospital a few weeks prior to my surgery. Then he prepared a charade with answers that related to the strength of his feelings for me. Funny enough, I did not understand what was going on at that point. Little did I know, he was declaring his love and it’s when he showed me a ring that I understood. Of course, I was overwhelmed with emotion and very touched that he got my family involved in the event.
“I am under regular care of my medical team of seven doctors – a gastroenterologist, oncologist surgeon, family general practitioner and many other specialists. I’ve had follow-up appointments at three months, six months, and one year. Those appointments include a gastroscopy, colonoscopy, scan, and blood tests, and so far, my health is the best ever. I like to tease the doctors when I see my charts – I look like an athlete on paper! In our Canadian medical system, each specialist treats only that part of the body. I make sure that all my test results are xeroxed and sent in advance of my appointment to each doctor. That takes time, but I am assured that everyone sees the same test results and can make educated decisions. That also makes for a more holistic view of my life.”
Advocate for Patient’ Rights
“Knowledge, access to information and caregiver support are probably the three most important factors in patient care. Medicine on its own is just not enough. Patients need a support system to balance out the highs and lows of searching through a medical condition, diagnosis and treatment plan. I hope one day to advocate for patient voices as it is a much needed part of our medical system.
“In hindsight, I realize all the doctors who saw me during the six months that I suffered prior to my diagnosis could not have known about my condition, unless they ran more tests. Surprisingly, I had done blood tests before that time for long-term disability insurance. The insurer had refused to insure me without explanation. Starting to be very sick, I did not pursue the work with them to understand their decision. Unfortunately, I learned a few weeks after my surgery that their test revealed the count of a certain type of protein was too high, therefore, too risky for them to insure me. They knew I was seriously sick but took about eight months to let me know. Had the insurer shared their results sooner, had doctors ran similar blood tests, or done a scan, I would have been diagnosed way sooner, which could have resulted in not needing chemotherapy.”
Incidence of Adenocarcinoma
Adenocarcinomas or malignant tumors of the duodenum are extremely rare, uncommon and difficult to manage and treat, according to Drs. P.L. Fagniez and N. Rotman in a book chapter in Surgical Treatment – Evidence-Based and Problem-Oriented, a medical textbook that assesses currently accepted clinical practice that takes into account when recommendations for patient treatment are made.The tumors represent 0.3 percent of gastrointestinal tract tumors and up to 50 percent of small bowel malignancies. They may arise from duodenal polyps or they may be associated with Celiac Disease. Five-year-survival varies widely according to published reports in the medical literature, but it is generally reported to be greater than 40 percent if the tumor is surgically removed. http://www.ncbi.nlm.nih.gov/books/NBK6953/.
Due to the low incidence of the disease globally, there is no randomized study comparing different types of treatment. In fact, the medical literature only discusses a small number of patients with this condition, who are usually older, or patients who are seen over a period of time. The treatment plan is complete surgical removal of the tumor, which is the only hope for a cure. Nonetheless, good long-term results have been observed with segmented tumor removal, particularly for tumors of the distal part of the duodenum, according to the same book chapter mentioned in the paragraph above.
A Bright Future Ahead
Nathalie believes in second chances and the value of waking up each and every day to new challenges and opportunities.
“Life is to be lived and enjoyed. I love what I do and I cherish my relationships, my work and my free time. In whatever I do, I give 100 percent.”
She believes she is very lucky to have had the diagnosis at this time of her life.
“In a way, my parents, my family, my husband were always present in my health journey. They followed up on doctors’ appointments, helped me with daily living chores, researched the medical literature, contacted new doctors, and generally, were my sounding board on everything. They were invaluable to me and it was my privilege that I am blessed with such a supportive family.
“I believe the road is set for you in life and it is up to all of us to seize the moment. My condition has given me strength to explore who I am and validate the way I always approach life.”
Nathalie Monette provided her permission to publish this interview on July 30, 2016.
Duodenum AND Cancer | Open Studies | Exclude Unknown in ClinicalTrials.gov Database. The search was conducted on July 30, 2016 and there were 45 studies found.
Presented, below, is a Subset of Clinical Trials on the List of 45 Studies related to Duodenum AND Cancer
SEE LINK, Below for the list of clinical trials currently recruiting:
Subset of Clinical Trials on the List of 45 Studies – Duodenum AND Cancer (6)
Or you may click on the following individual links below for clinical trials that are currently recruiting:
Spectroscopy From Duodenum
||Other: Spectroscopy device
A Randomized Trial of Two Surgical Techniques for Pancreaticojejunostomy in Patients Undergoing Pancreaticoduodenectomy
||Pancreatic Neoplasms; Biliary Tract Neoplasms; Pancreatitis, Chronic; Duodenal Neoplasms
Endoscopic Characteristics of Duodenal and Ampullary Lesions
||Other: Tissue Sampling
EUS GUIDED Transduodenal Biopsy Using the 19G Flex
||Device: Expect™19Flex needle (Boston Scientific Corp.,Natick,MA,USA)
Study of Gastroduodenal Metallic Stent vs Gastrojejunostomy
||Device: gastroduodenal stent placement; Procedure: gastrojejunostomy
Prevalence of Small Bowel Polyps in Patients With Sporadic Duodenal Adenomas
||Device: Small bowel video capsule endoscopy (VCE) GIVEN/COVIDIEN LTD
Long-term Outcomes of Endoscopic Resection (ER) of Lesions of the Duodenum and Ampulla
||Procedure: Endoscopic Mucosal Resection
Prophylactic Octreotide to Prevent Post Duodenal EMR and Ampullectomy Bleeding
||Drug: octreotide; Other: No octreotide
The Use of a Restrictive Fluid Regimen With Hypertonic Saline for Patients Undergoing Pancreaticoduodenectomy
||Drug: 3% NaCl Solution; Drug: Lactated Ringers Solution
Effects of Pancreaticoduodenectomy on Glucose Metabolism
||Diabetes Mellitus; Glucose Intolerance
Other related articles:
Retrieved from http://www.ncbi.nlm.nih.gov/books/NBK6953/.
Other related articles were published in this Open Access Online Scientific Journal include the following:
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Colon cancer and organoids
Checkpoint inhibitors for gastrointestinal cancers
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