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Liebe Claudia, ich danke dir für deinen Tip, daß es ein Retinoblastomforum gibt. Es hilft, sich mit Betroffenen auszutauschen.Auf jeden Fall rate ich dir,mit der Klinik Essen Kontakt aufzunehmen. Du bekommst demnächst einen Antwortbrief von mir.Gruß von Rita
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Erstellt: 18.04.18, 10:14 Betreff: Re: Dringend!
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Zitat: Ildiko
Liebe Claudia, liebe alle,
hab einige Zeit aus dem Forum gefehlt, bin einigen Leuten noch Antworten schuldig, nun aber meine Stellungnahme bzgl. 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cc20180518 Ich kann da nur Christina beipflichten: bei Komplikationen sich sofort an Institute wenden, die gehäuft RB behandeln und deren Forschungsschwerpunkte zumindest im Bereich Ophtalmo-Onkologie liegen. Die Kliniken haben inzwischen sehr gute Homepages, da kann auch der der Laie schnell einsehen, wer sich mit welchem Thema befasst.
Da geht es nicht um banale Fälle von RB (wenn Krebs als banal bezeichnet werden kann), ein Auge rausschmeißen und die Muskeln so verbinden, dass die Prothese halbwegs vernünftig sitzt, ist wirklich keine große Kunst, aber wenn’s brenzlig wird, bei den bilateralen, multifokalen Fällen mit Rezidiven oder sonstigen Komplikationen sollte man sich – einfach aufgrund des Gesetzes der hohen Zahlen – an Spezialisten wenden, die mehr als 1-2 RB-Fälle/Jahr sehen.
Überlegt euch, in Deutschland gibt es cca. 60 RB-Fälle im Jahr, davon sind 2/3 sporadisch, d.h. ein einzelner Tumor in einem Auge. Bei uns, Bilateralen, ist zu bedenken, dass das Auge selber und der Organismus von den Behandlungen schon übersensibilisiert sind und wir ganz individuell verrückt spielen können. Eine Uveitis, die meine Jugend versaut hat, scheint keine/r von euch gehabt zu haben, nichtdestsotrotz hätte es mein Augenlicht kosten können.
Auf Janins HP findet ihr die führenden RB-Kliniken der Welt aufgelistet. Wendet euch an sie im Falle des Falles und sie werden antworten. Wichtig ist, dass ihr euer Anliegen klar formuliert, höflich aber bestimmt gezielt nach Informationen fragt. Anschreiben sollte man – sofern möglich – gleich mehrere Ärzte (natürlich auf die weiteren Briefe verweisen), beim Chef ist es besser, sich an die Sekretärin zu wenden.
Vor paar Monaten musste ich für eine Studentin von mir Bestätigung für Leukämie- bzw. Lymphom-Verdacht einholen, und zwar schleunigst. Über die Hämatologie Essen sind wir an die Pathologie Lübeck verwiesen worden, diese hat die per DHL verschickten Gewebeproben innerhalb eines Forschungsprojekts analysiert, d.h. wir mussten nichts bezahlen, in 2 Wochen hatten wir die (zum Glück negative) Antwort. Manchmal muss man halt auch einfach nur dreist sein.
Ein richtig guter Arzt wird aus der Einholung einer Zweitmeinung niemals eine Prestige-Frage machen. Wenn er es tut, ist zu überlegen, ob er auch der Richtige ist.
In der Hoffnung, dass so wenige wie möglich meine gut gemeinten Ratschläge brauchen werden, grüße ich euch alle herzlich.
Ildiko |
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