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Inge lives a full and happy life despite having pancreatic NET for nearly twenty five years.
Xavier was diagnosed with a pancreatic NET more than five years ago.
My name is Xavier and I was diagnosed with a pancreatic NET (pancreatic neuroendocrine tumour) more than five years ago. Prior to my diagnosis in 2005, I was ill for about a year with stomach problems and pain. I ignored the pancreatic NET symptoms because I was busy with my work and my young family. I thought that the symptoms were related to bad diet or my stressful work environment.
Eventually, my wife convinced me to go to the doctor and he diagnosed high blood pressure. This can sometimes be caused by kidney disease so I had a scan of my lower abdomen. I found out later that the high blood pressure was caused by the pressure of the pancreatic NET on an artery. The tumour was not diagnosed at that time because it was positioned just above the level of the scan.
I embarked on a regime of sport such as football and tennis to lower my blood pressure through improved diet and exercise. I did this for a year and succeeded in lowering my blood pressure as well as improving my fitness.
One year later, in the spring of 2005, the continuing headaches and digestive symptoms drove me to go to the hospital once more. At first, the doctors suspected lymphoma but shortly thereafter I was sent to a specialist centre for gastrointestinal diseases. There, I had an ultrasound which revealed a huge black mass in the abdomen - the pancreatic NET.
I immediately set about trying to find out as much as I could about pancreatic NET. The information l found on the internet at that time was either not credible or was scientific and not something that a patient could understand.
Things then began to happen very quickly, I went to the gastroenterologist in April and by June l was undergoing surgery. The surgery was very hard. It took eight hours with a six month recovery period.
The surgeon had discovered liver metastases during my first operation but they could not be removed at the time. After a year, I had to have a second operation. I have friends who are doctors so I asked them for advice. They agreed I should go to a surgeon who specialises in removing liver metastases. I got a copy of my file and scans, went to the hospital where this specialist works, found him and asked him if he would perform my operation. He agreed and scheduled me for a few days later!
Obviously, I had informed my employer that I was ill, but as I did not fit the image of a cancer patient that they were used to – my hair did not fall out and I didn’t look unwell - my colleagues did not really understand what was happening to me.
Pancreatic NET is a slow moving disease; it is chronic, not acute. Sometimes l am very ill, especially following the surgeries but sometimes I am able to go back to work. People frequently survive with pancreatic NET for many years, going through these ups and downs. In 2008, one of my regular check-up scans revealed further metastases in the liver so I underwent a third surgery. After that I was treated with radiofrequency ablation and in August 2009, underwent a fourth surgery which included the removal of a kidney.
It is unusual to have so many surgeries; most people are not strong enough to withstand it but because I am young and fit, it is the best course of treatment for me. I believe that as a patient you should take responsibility for your own care if you can. I have been active in deciding what treatments l will have; l selected my own surgeon and my doctor carefully after taking advice from people I trust. In 2008, I decided to give something back to the people who had done so much for me. I joined Fondation ARCAD which aims to make the general public and health workers sensitive to the need for prevention and early screening, improve patient care and clinical research and to provide better information and support to patients in the area of digestive cancers. I am the first Board member who is not a scientist so my role is often to give the patient's perspective. With assistance from my employer, we have succeeded in raising over €100,000 to go towards NET research.
Obviously with such a serious illness my life went through tremendous changes, on a personal, professional and social basis. This experience has made me see how much my family and friends support and love me. lt has been difficult on my children, especially the youngest my second daughter who was a baby when I was diagnosed. But it is not a hopeless life: some treatments arriving today in the market were not available for patients five years ago. Therefore, I think it is important for patients to stay in good shape and not to give up hope. After recovery from the surgeries, I am able to have a nearly normal life, being able to return to work but most importantly, to enjoy time with my family and friends.
For more information on pancreatic NET symptoms visit the Foundation A.R.C.A.D. at www.fondationarcad.org
The production of this video was made possible by Pfizer.
10080 Revised November 2011comments powered by Disqus