Pancreatic NET: A rare cancer [video]

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Pancreatic NET: a rare cancer

Pancreatic neuroendocrine tumours (NET) are uncommon malignant tumours arising from endocrine cells of the pancreas. I was diagnosed with NET in Spring 2005. Xavier - Living with Pancreatic NET. For one year I had some trouble with headaches and digestive problems, but I obviously ignored them. In the end, my wife convinced me to go in for a checkup. I had a scan, and then we discovered a huge black mass. I went straight to the hospital, and the doctors first suspected a lymphoma, but it turned out to be a NET.

After that, things began to move very quickly. The treatment options for NET at the time were not very optimistic. In fact, I had the choices between 3 options. The first one was surgery, which was a huge surgery and a risky surgery in my case because of the size of the mass. The second choice was chemo. The chemo was aggressive and would have made me very sick. And the third one was radiotherapy but which was not indicated in this case. Then, in fact, I had no choice but to go in for surgery.

Since my diagnosis in 2005, I had, in fact, 4 surgeries which lasted up to 8 hours, and it took around 6 months to recover from each of them. It was difficult to find information about NETs at that time. Because it's such a rare disease, there is everything and the contrary on the internet. I have the chance to have friends who are doctors and would give me good advice around my own case along with my own doctors and surgeons at the hospital. It is important to find a real expert, and to have access to a team of specialists to handle your case. I am now a patient of Professor Pascal Hammel. And the interesting thing about Pascal is that he is also a cancer survivor, and he really knows what patients are experiencing.

I wanted to give something back to all the doctors and surgeons I've met during these 4 years, and when I was offered the opportunity to join the board of the ARCAD foundation, I did not hesitate. The ARCAD foundation is a young foundation created by one of the most recognized professors in this field--Professor Aimery de Gramont. The foundation provides clinical research and patient information for all types of digestive cancers. On my side, I'm mostly involved in fundraising, and obviously giving the patient's point of view, because most of the board members are doctors.

With the support of donors and different partners, our efforts have been very successful. And more recently, with the help of my employer and the generosity of many of my colleagues, we've been able to finance several clinical projects and information booklets dedicated to NETs. Obviously, with such a serious illness, my life went through tremendous changes--on a personal, on a professional, and even on a social basis. But it is not a hopeless life. There are some treatments arriving in the markets that were not available 5 years ago. And I would like to say, for the patients the most important thing is to stay in good shape and not to give up hope.