{"id":88865,"date":"2025-10-06T17:01:07","date_gmt":"2025-10-06T15:01:07","guid":{"rendered":"https:\/\/www.ipsen.com\/?p=88865"},"modified":"2025-10-06T17:12:03","modified_gmt":"2025-10-06T15:12:03","slug":"lhistoire-de-melanie-vivre-avec-des-tumeurs-neuroendocrines-pulmonaires","status":"publish","type":"post","link":"https:\/\/www.ipsen.com\/fr\/mediastatement-fr\/oncology-mediastatement-fr\/lhistoire-de-melanie-vivre-avec-des-tumeurs-neuroendocrines-pulmonaires\/","title":{"rendered":"L\u2019histoire de M\u00e9lanie : vivre avec des tumeurs neuroendocrines pulmonaires"},"content":{"rendered":"\n<p>L\u2019exp\u00e9rience de chaque personne atteinte de tumeurs neuroendocrines (TNE) est unique. Pour M\u00e9lanie, accepter le diagnostic d\u2019une TNE pulmonaire s\u2019inscrit dans un processus continu, fait de recherches, de d\u00e9couvertes et d\u2019apprentissage, pour mieux comprendre comment vivre avec cette forme de cancer complexe et encore trop m\u00e9connue.<\/p>\n\n\n    <section class=\"video-card \">\n        <div class=\"container\">\n            <!-- Block Details -->\n            <div class=\"video-card-header\">\n                <h3 class=\"video-card-block-title hidden heading-three\">\n                                    <\/h3>\n                <p class=\"charcoal-grey video-card-block-summary hidden\"> \n                                    <\/p>\n            <\/div>\n\n            <!-- Video Iframe embed -->\n                            <div class=\"video-embed\"> \n                <iframe loading=\"lazy\" title=\"250912_Melanie&#039;s Story_Long form Video_V6\" src=\"https:\/\/player.vimeo.com\/video\/1124873275?app_id=122963&#038;autoplay=1&#038;muted=1&#038;controls=1&#038;loop=1&#038;autopause=1&#038;background=0\" width=\"640\" height=\"360\" frameborder=\"0\" allow=\"autoplay; fullscreen; picture-in-picture; clipboard-write; encrypted-media; web-share\" referrerpolicy=\"strict-origin-when-cross-origin\" frameborder=\"0\" allow=\"autoplay; fullscreen; picture-in-picture\" data-ot-ignore><\/iframe>                <\/div>\n            \n            <!-- Block CTA -->\n            <div class=\"cta-block hidden\">\n                            <\/div>\n\n        <\/div>\n    <\/section>\n\n\n\n<p><strong>L\u2019\u00e9tablissement du diagnostic<\/strong><strong><\/strong><\/p>\n\n\n\n<p>Comme pour beaucoup, M\u00e9lanie a appris son diagnostic par hasard, \u00e0 la suite d\u2019un simple contr\u00f4le de routine pour une toux. Lorsqu\u2019une radiographie a r\u00e9v\u00e9l\u00e9 une ombre au niveau de ses poumons, son m\u00e9decin g\u00e9n\u00e9raliste lui a d\u2019abord diagnostiqu\u00e9 un cancer du poumon avec un pronostic tr\u00e8s pessimiste \u2014 une information qu\u2019elle n\u2019a pas re\u00e7ue directement lors de la consultation, mais qu\u2019elle a d\u00e9couverte dans son dossier m\u00e9dical. Ce fut un choc, avec une grande d\u00e9tresse face \u00e0 l\u2019incertitude de ce qu\u2019impliquait potentiellement ce diagnostic pour son avenir. Ce n\u2019est qu\u2019apr\u00e8s une biopsie que le diagnostic r\u00e9el a \u00e9t\u00e9 pos\u00e9 : M\u00e9lanie \u00e9tait en r\u00e9alit\u00e9 atteinte d\u2019une forme avanc\u00e9e de tumeurs neuroendocrines pulmonaires, un terme dont elle n\u2019avait jamais entendu parler auparavant.<\/p>\n\n\n\n<p><strong>S\u2019informer pour mieux comprendre<\/strong><strong><\/strong><\/p>\n\n\n\n<p>Les TNE constituent une forme relativement rare de cancer qui affecte les cellules du syst\u00e8me neuroendocrinien<sup>1<\/sup>. Ces cellules sont pr\u00e9sentes dans tout le corps, mais les TNE surviennent toutefois le plus souvent dans les poumons, l\u2019estomac ou le pancr\u00e9as<sup>2<\/sup>. La plupart des formes de TNE se d\u00e9veloppent lentement et sont moins agressives<sup>3<\/sup>, un point que le m\u00e9decin a soulign\u00e9 aupr\u00e8s de M\u00e9lanie. Mais quel que soit le type de cancer, le diagnostic bouleverse profond\u00e9ment la vie. M\u00eame si M\u00e9lanie avait enfin pu mettre un nom sur sa maladie, la raret\u00e9 des TNE, en particulier pulmonaires, rendait l\u2019acc\u00e8s \u00e0 l\u2019information difficile. Pourtant, environ 35 personnes sur 100 000 dans le monde vivent avec une TNE<sup>1<\/sup>, et les TNE pulmonaires repr\u00e9sentent 27 % de ces cas<sup>2<\/sup>, \u2014 une r\u00e9alit\u00e9 bien plus fr\u00e9quente qu\u2019on ne l\u2019imagine. Afin d\u2019obtenir plus d\u2019informations, M\u00e9lanie a demand\u00e9 un deuxi\u00e8me avis \u00e0 un professeur intervenant dans un centre d\u2019excellence sur les TNE, qui poss\u00e9dait l\u2019expertise n\u00e9cessaire pour discuter de la complexit\u00e9 de son diagnostic.<\/p>\n\n\n\n<p>Bien que rassur\u00e9e sur les possibilit\u00e9s de traitement, M\u00e9lanie a appris que sa TNE n\u2019\u00e9tait pas op\u00e9rable. Elle devait donc apprendre \u00e0 vivre avec \u2014 un processus en constante \u00e9volution. Pour cela, elle a cherch\u00e9 \u00e0 mieux comprendre sa maladie. Elle souligne le r\u00f4le essentiel d\u2019une association nationale de patients, qui lui a offert un soutien pr\u00e9cieux, des \u00e9changes avec d\u2019autres personnes vivant des parcours similaires, et un acc\u00e8s \u00e0 des ressources fiable v\u00e9ritables mines d&#8217;informations pour elle.<\/p>\n\n\n\n<p>\u00ab Chacun vit les choses \u00e0 sa mani\u00e8re. Mais tous sont incroyablement bienveillants et positifs. M\u00eame dans les moments les plus difficiles, il y a une grande affection de la part des uns et des autres. Nous avons tous le sentiment de faire partie d\u2019une grande famille.&nbsp;\u00bb<\/p>\n\n\n\n<p><strong>L\u2019importance d\u2019\u00eatre visible et compris <\/strong><strong><\/strong><\/p>\n\n\n\n<p>Vivre avec un cancer rare peut \u00eatre source d\u2019isolement. M\u00e9lanie se sent physiquement bien la plupart du temps, mais elle porte le poids d\u2019une maladie pour laquelle les parcours de soins sont souvent complexes et l\u2019avenir incertain. R\u00e9cemment, M\u00e9lanie s\u2019est rendue \u00e0 des consultations avec une amie, car on lui a diagnostiqu\u00e9 un type de cancer plus courant. Ces consultations ont mis en lumi\u00e8re la disparit\u00e9 des soins entre chaque type de cancer. Les connaissances m\u00e9dicales, le financement et le soutien sp\u00e9cialis\u00e9 dont b\u00e9n\u00e9ficient les personnes atteintes de cancers moins courants peuvent \u00eatre limit\u00e9s. Le manque de personnel infirmier d\u00e9di\u00e9, la difficult\u00e9 d\u2019obtenir rapidement les r\u00e9sultats d&#8217;examens, le d\u00e9ficit d\u2019information des patients, notamment sur l\u2019existence de groupes de soutien et m\u00eame le financement du stationnement sur les parkings des h\u00f4pitaux, sont autant de constats qui t\u00e9moignent de cette disparit\u00e9.<\/p>\n\n\n\n<p><strong>Une vision \u00e0 long terme de la vie<\/strong><strong><\/strong><\/p>\n\n\n\n<p>Si M\u00e9lanie a accept\u00e9 la possibilit\u00e9 que ses TNE \u00e9voluent, qu\u2019elles grossissent, r\u00e9tr\u00e9cissent ou se propagent, elle reste d\u00e9termin\u00e9e \u00e0 vivre pleinement, \u00e0 appr\u00e9cier les activit\u00e9s pour ce qu\u2019elles lui apportent, sans les associer uniquement \u00e0 sa maladie. Son m\u00e9tier de jardini\u00e8re paysagiste et sa r\u00e9cente passion pour la nage en mer lui permettent aujourd\u2019hui de continuer \u00e0 profiter de sa passion pour les activit\u00e9s de plein air. L\u2019appr\u00e9hension du quotidien avec les TNE est un chemin que M\u00e9lanie parcourt avec d\u00e9termination, une marche apr\u00e8s l\u2019autre.<\/p>\n\n\n\n    <!--Accordion Cards Start Here-->\n    <section class=\"accordion bg-color-disabled\"  data-according-id=\"7861357\">\n        <div class=\"container\">\n            <div class=\"row\">\n                <!--Accordion info section-->\n                <div class=\"column-1 col-xl-12 col-md-12 col-sm-12\">\n                    <div class=\"accordian-info\">\n                        <h3 class=\"accordian-heading hidden heading-three\">\n                                                    <\/h3>\n                        <p class=\"accordian-summary hidden\"><\/p>\n                    <\/div>\n                <\/div><!--Accordion info section over here -->\n\n                <div class=\"col-xl-12 col-lg-12 col-md-12 col-sm-12\">\n                    <div class=\"accordion accor-group\" id=\"accordionExample7861357\">\n                         \n                                    <!-- Accordion with Expandable panel & FAQs -->\n                                    <div class=\"accordion-item accor-item\">\n                                        <p class=\"accordion-header accor-head-para\" id=\"expHeading0\">\n                                            <button class=\"accordion-button accor-btn collapsed\" type=\"button\" data-bs-toggle=\"collapse\" data-bs-target=\"#expHeading78613570\" aria-expanded=\"false\" aria-controls=\"expHeading78613570\">\n                                                R\u00e9f\u00e9rences                                            <\/button>\n                                        <\/p>\n                                        <div id=\"expHeading78613570\" class=\"accordion-collapse collapse \" aria-labelledby=\"expHeading0\" data-bs-parent=\"#accordionExample7861357\">\n                                            <div class=\"accordion-body\">\n                                                <div class=\"accordion-data\">\n                                                    <p><ol>\n<li>Singh\u00a0<em>et al<\/em>. Patient-Reported Burden of a Neuroendocrine Tumor (NET) Diagnosis: Results From the First Global Survey of Patients With NETs.\u00a0<em>J Glob Oncol<\/em>. 2017 Feb; 3( 1 ): 43\u201353.<\/li>\n<li>Frilling <em>et al. <\/em>Neuroendocrine tumor disease: an evolving landscape. Endocr Relat Cancer. 2012 Sep 14;19( 5 ):R163-85. doi: 10.1530\/ERC-12-0024. PMID: 22645227.<\/li>\n<li>Neuroendocrine tumor (NET). <a href=\"https:\/\/www.cancer.gov\/pediatric-adult-rare-tumor\/rare-tumors\/rare-endocrine-tumor\/carcinoid-tumor.%20Accessed%20September%202025\">https:\/\/www.cancer.gov\/pediatric-adult-rare-tumor\/rare-tumors\/rare-endocrine-tumor\/carcinoid-tumor<\/a>.<a href=\"https:\/\/www.cancer.gov\/pediatric-adult-rare-tumor\/rare-tumors\/rare-endocrine-tumor\/carcinoid-tumor.%20Accessed%20September%202025\"> Accessed September 2025.<\/a><\/li>\n<\/ol>\n<\/p>\n                                                    <div class=\"cta-block hidden\" >\n                                                                                                            <\/div>\n                                                <\/div>\n                                            <\/div>\n                                        <\/div>\n                                    <\/div>\n                                                <\/div>\n                <\/div> \n            <\/div>\n        <\/div>\n    <\/section>\n    <!--Accordion Cards End Here-->\n","protected":false},"excerpt":{"rendered":"<p>L\u2019exp\u00e9rience de chaque personne atteinte de tumeurs neuroendocrines (TNE) est unique. Pour M\u00e9lanie, accepter le diagnostic d\u2019une TNE pulmonaire s\u2019inscrit<\/p>\n","protected":false},"author":97,"featured_media":88869,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[7522],"tags":[],"class_list":["post-88865","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-oncology-mediastatement-fr","entry"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v25.9 - https:\/\/yoast.com\/wordpress\/plugins\/seo\/ -->\n<title>L\u2019histoire de M\u00e9lanie : vivre avec des tumeurs neuroendocrines pulmonaires - Global<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/www.ipsen.com\/fr\/mediastatement-fr\/oncology-mediastatement-fr\/lhistoire-de-melanie-vivre-avec-des-tumeurs-neuroendocrines-pulmonaires\/\" \/>\n<meta property=\"og:locale\" content=\"fr_FR\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"L\u2019histoire de M\u00e9lanie : vivre avec des tumeurs neuroendocrines pulmonaires - Global\" \/>\n<meta property=\"og:description\" content=\"L\u2019exp\u00e9rience de chaque personne atteinte de tumeurs neuroendocrines (TNE) est unique. 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