Zespół lyncha
Charakterystyka, pielęgnacja i opieka

Zespół Lyncha, dziedziczny rak jelita grubego niezwiązany z polipowatością (HNPCC), jest najczęstszym dziedzicznym zespołem predysponującym do nowotworów jelita grubego oraz innych narządów, spowodowany mutacjami w genach MLH1, MSH2, MSH6, PMS2 lub EPCAM. W populacji ogólnej częstość występowania wynosi około 1 na 279-400 osób, a w USA szacuje się, że około 1 milion osób jest nosicielami, z czego jedynie 5% zostało zdiagnozowanych. Osoby z zespołem Lyncha mają podwyższone ryzyko rozwoju nowotworów jelita grubego, endometrium, jajnika, żołądka, jelita cienkiego, dróg moczowych, trzustki, dróg żółciowych, mózgu i skóry, często w młodszym wieku niż populacja ogólna. Diagnostyka opiera się na szczegółowym wywiadzie rodzinnym obejmującym co najmniej trzy pokolenia oraz testach genetycznych, w tym panelach badań dziedzicznych zespołów nowotworowych. Kluczowe jest poradnictwo genetyczne oraz wdrożenie spersonalizowanego planu badań przesiewowych, w tym kolonoskopii co 1-2 lata, rozpoczynając w wieku 20 lat lub 2-5 lat wcześniej niż wiek najmłodszego chorego w rodzinie.

Zespół Lyncha: definicja i charakterystyka

Zespół Lyncha (inaczej dziedziczny rak jelita grubego niezwiązany z polipowatością, HNPCC) jest najczęstszym dziedzicznym zespołem predysponującym do rozwoju nowotworów jelita grubego oraz wielu innych typów nowotworów. Jest to choroba dziedziczona autosomalnie dominująco, spowodowana mutacjami w genach MLH1, MSH2, MSH6, PMS2 lub EPCAM, które odpowiadają za naprawę błędnie sparowanych zasad w DNA.12

Szacuje się, że w Stanach Zjednoczonych około 1 milion osób ma zespół Lyncha, jednak tylko około 5% z nich zostało zdiagnozowanych. Częstość występowania w populacji ogólnej wynosi około 1 na 279-400 osób, co czyni go równie częstym jak zespół związany z mutacjami w genach BRCA1/2.34

Osoby z zespołem Lyncha mają zwiększone ryzyko zachorowania na różne nowotwory, często w młodszym wieku niż populacja ogólna. Najczęściej występują nowotwory jelita grubego i odbytnicy, a u kobiet dodatkowo nowotwory endometrium (trzonu macicy) i jajnika. Inne nowotwory związane z zespołem Lyncha obejmują nowotwory żołądka, jelita cienkiego, dróg moczowych, trzustki, dróg żółciowych, mózgu oraz skóry.56

Opieka pielęgnacyjna i medyczna w zespole Lyncha

Opieka nad pacjentami z zespołem Lyncha wymaga kompleksowego, multidyscyplinarnego podejścia ze względu na złożoność problemu i konieczność długoterminowego monitorowania. Podstawowe elementy opieki obejmują:78

Identyfikacja osób z grupy ryzyka

Personel pielęgniarski odgrywa kluczową rolę w identyfikacji pacjentów, którzy mogliby skorzystać z poradnictwa genetycznego. Ważne jest zebranie dokładnego wywiadu rodzinnego obejmującego co najmniej trzy pokolenia, ze szczególnym uwzględnieniem przypadków raka jelita grubego i innych nowotworów związanych z zespołem Lyncha.9

  • Ocena powinna obejmować krewnych pierwszego, drugiego i trzeciego stopnia zarówno ze strony matki, jak i ojca
  • Szczególną uwagę należy zwrócić na pacjentów z rakiem jelita grubego zdiagnozowanym przed 50 rokiem życia
  • Należy brać pod uwagę również inne nowotwory związane z zespołem Lyncha, takie jak rak endometrium, jajnika, żołądka, dróg moczowych czy trzustki

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W przypadku wątpliwości lub gdy pacjent wyraża obawy dotyczące dziedzicznego raka, należy skierować go na poradnictwo genetyczne.11

Poradnictwo genetyczne i testy genetyczne

Jednym z najważniejszych kroków po pozytywnej diagnozie zespołu Lyncha jest skorzystanie z poradnictwa genetycznego. Doradcy genetyczni to specjaliści, którzy dostarczają informacji o chorobach genetycznych, pomagając pacjentom zrozumieć ryzyko i konsekwencje dla ich rodzin.12

Testy genetyczne w kierunku zespołu Lyncha obejmują:1314

  • Wstępne testy genetyczne w rodzinie (tzw. poszukiwanie mutacji) powinny być wykonane u osoby w rodzinie, która zachorowała na nowotwór związany z zespołem Lyncha
  • Jeśli zostanie znaleziona mutacja rodzinna, pozostałym członkom rodziny można zaoferować testy predykcyjne
  • Obecnie standardem opieki jest zamawianie panelu badań genetycznych w kierunku dziedzicznych zespołów nowotworowych, który pozwala na jednoczesne testowanie wielu zespołów

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Edukacja pacjenta i rodziny

Edukacja jest niezbędnym elementem opieki nad pacjentami z zespołem Lyncha. Pielęgniarki i inni pracownicy ochrony zdrowia powinni dostarczać pacjentom i ich rodzinom kompleksowych informacji na temat:16

  • Natury zespołu Lyncha i związanego z nim ryzyka nowotworów
  • Znaczenia regularnych badań przesiewowych
  • Możliwości profilaktyki i leczenia
  • Dziedzicznego charakteru schorzenia i potrzeby informowania członków rodziny

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Pacjenci powinni być również poinformowani o tym, że posiadanie zespołu Lyncha nie oznacza, że na pewno zachorują na raka – oznacza to jedynie zwiększone ryzyko. Z odpowiednim monitorowaniem i profilaktyką, wiele nowotworów można wykryć wcześnie lub nawet im zapobiec.18

Koordynacja opieki multidyscyplinarnej

Ze względu na złożoność zespołu Lyncha i jego wpływ na wiele układów narządów, opieka nad pacjentem wymaga udziału różnorodnych specjalistów. Zespół opieki może obejmować:19

  • Gastroenterologów
  • Chirurgów
  • Ginekologów-onkologów
  • Urologów
  • Dermatologów
  • Ginekologów
  • Lekarzy podstawowej opieki zdrowotnej
  • Genetyków
  • Doradców genetycznych
  • Onkologów

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Personel pielęgniarski, zwłaszcza specjaliści ds. zespołu Lyncha, odgrywa kluczową rolę w koordynacji skierowań do różnych specjalistów i wizyt kontrolnych, w oparciu o spersonalizowany plan postępowania.21

Badania przesiewowe i nadzór w zespole Lyncha

Badania przesiewowe mają kluczowe znaczenie w opiece nad osobami z zespołem Lyncha, ponieważ umożliwiają wczesne wykrycie nowotworów, gdy są one najbardziej podatne na leczenie. Plan badań przesiewowych powinien być dostosowany do indywidualnych potrzeb pacjenta, z uwzględnieniem specyficznej mutacji genowej i historii rodzinnej.22

Badania przesiewowe w kierunku raka jelita grubego

U osób z zespołem Lyncha zaleca się rozpoczęcie badań przesiewowych w kierunku raka jelita grubego w znacznie młodszym wieku niż w populacji ogólnej:23

  • Rozpoczęcie kolonoskopii we wczesnych latach 20. lub 2-5 lat wcześniej niż wiek najmłodszej osoby z diagnozą w rodzinie (w zależności od tego, co nastąpi wcześniej)
  • Kolonoskopia powinna być wykonywana co 1-2 lata
  • U osób z zespołem Lyncha polipy mają tendencję do trudniejszego wykrywania, co może wymagać stosowania nowszych technik kolonoskopii, takich jak chromoendoskopia, która wykorzystuje barwnik do kolorowania tkanki okrężnicy i pomaga wykryć płaskie polipy

2425

Regularne badania kolonoskopowe u osób z zespołem Lyncha znacząco zmniejszają zapadalność i śmiertelność z powodu raka jelita grubego.26

Badania przesiewowe w kierunku raka endometrium i jajnika

Kobiety z zespołem Lyncha mają zwiększone ryzyko rozwoju raka endometrium (trzonu macicy) i jajnika. Zalecenia dotyczące badań przesiewowych obejmują:27

  • Coroczną biopsję endometrium od 30-35 roku życia
  • Przezpochwowe badanie ultrasonograficzne
  • Badanie stężenia CA-125 w surowicy
  • Coroczne badania ginekologiczne

2829

Biopsja endometrium jest szczególnie ważna w przypadku kobiet z zespołem Lyncha, które zgłaszają nieprawidłowe objawy, takie jak nieregularne krwawienie z pochwy lub krwawienie pomenopauzalne.30

Inne badania przesiewowe

W zależności od specyficznej mutacji genowej i historii rodzinnej, mogą być zalecane dodatkowe badania przesiewowe:31

  • Endoskopia górnego odcinka przewodu pokarmowego (EGD) od 30-40 roku życia, powtarzana co 2-4 lata
  • Badanie moczu (analiza moczu) od 30-35 roku życia
  • Rozważenie dodatkowych badań przesiewowych lub rozpoczęcie badań w młodszym wieku, w zależności od osobistych czynników ryzyka i historii rodzinnej

3233

Profilaktyka i redukcja ryzyka w zespole Lyncha

Oprócz regularnych badań przesiewowych, istnieją różne strategie profilaktyczne i metody redukcji ryzyka, które mogą być zastosowane u osób z zespołem Lyncha.34

Zabiegi chirurgiczne redukujące ryzyko

W niektórych przypadkach, osoby z zespołem Lyncha mogą rozważyć operacje profilaktyczne (zmniejszające ryzyko), które polegają na usunięciu narządów zagrożonych rozwojem nowotworu zanim pojawi się choroba:35

  • Histerektomia (usunięcie macicy) – zmniejsza ryzyko raka endometrium
  • Owariektomia (usunięcie jajników) – znacznie zmniejsza ryzyko raka jajnika
  • Kolektomia (usunięcie większości lub całości okrężnicy) – zmniejsza ryzyko raka jelita grubego

36

Decyzja dotycząca operacji powinna być podejmowana przez pacjenta po konsultacji z zespołem wielodyscyplinarnym, z uwzględnieniem jego życzeń, ryzyka związanego z konkretnym genem, chorób współistniejących i wieku.37

Kobietom z zespołem Lyncha, które zakończyły już rozród, zaleca się rozważenie profilaktycznej histerektomii i obustronnego usunięcia jajników i jajowodów.3839

Chemioprewencja

Istnieją dane sugerujące, że pewne leki mogą zmniejszać ryzyko nowotworów u osób z zespołem Lyncha:40

  • Aspiryna – niektóre badania wykazały, że codzienne przyjmowanie aspiryny może zmniejszyć ryzyko raka jelita grubego u osób z zespołem Lyncha. Międzynarodowe badanie CAPP2 wykazało, że aspiryna może zmniejszyć ryzyko raka jelita grubego w tej grupie. Nie należy jednak rozpoczynać przyjmowania aspiryny bez konsultacji z lekarzem, ponieważ może ona powodować poważne krwawienia, zwłaszcza u osób przyjmujących leki przeciwzakrzepowe.414243
  • Doustne środki antykoncepcyjne – badanie CASH (Cancer and Steroid Hormone Study) wykazało, że stosowanie doustnych środków antykoncepcyjnych może zmniejszyć ryzyko raka endometrium o 50%.44

Kobietom w wieku 25-45 lat zazwyczaj oferowana jest chemoprewencja. Najczęstszą formą chemoprewencji, tabletka antykoncepcyjna, jak wykazano, zmniejsza ryzyko raka jajnika o 50%.45

Styl życia i modyfikacje dietetyczne

Chociaż czynniki związane ze stylem życia mogą mieć mniejszy wpływ w przypadku zespołu Lyncha niż w przypadku sporadycznych nowotworów, zachowanie zdrowego stylu życia jest zalecane:46

  • Zaprzestanie palenia tytoniu
  • Utrzymywanie zdrowej masy ciała
  • Regularna aktywność fizyczna
  • Zdrowa dieta bogata w owoce, warzywa, produkty mleczne o niskiej zawartości tłuszczu, chude mięsa, ryby i rośliny strączkowe
  • Ograniczenie spożycia alkoholu

4748

Najnowsze badania sugerują również, że regularny program ćwiczeń może pomóc w zapobieganiu rakowi jelita grubego u pacjentów z zespołem Lyncha. Badania wykazały poprawę sprawności układu krążenia, zmniejszenie markerów prozapalnych i zwiększenie komórek promujących aktywację układu odpornościowego po rocznej interwencji polegającej na jeździe na rowerze.49

Opieka psychospołeczna i wsparcie emocjonalne

Diagnoza zespołu Lyncha może mieć znaczący wpływ emocjonalny na pacjentów i ich rodziny. Strach przed potencjalnymi nowotworami i wpływ na przyszłość rodziny mogą być przytłaczające.50

Ocena i zaspokajanie potrzeb psychospołecznych

Personel pielęgniarski powinien regularnie oceniać potrzeby psychospołeczne pacjentów z zespołem Lyncha i oferować odpowiednie wsparcie:51

  • Rozpoznawanie lęku, depresji i innych problemów psychologicznych związanych z diagnozą
  • Kierowanie pacjentów do specjalistów zdrowia psychicznego, gdy jest to wskazane
  • Zapewnianie przestrzeni do wyrażania obaw i zadawania pytań
  • Pomaganie pacjentom w radzeniu sobie z niepewnością związaną z ich stanem

Ważne jest uznanie tych uczuć i znalezienie zdrowych sposobów radzenia sobie z nimi. Rozmowa ze specjalistą ds. zdrowia psychicznego może być niezwykle korzystna w zarządzaniu lękiem i stresem.52

Budowanie sieci wsparcia

Budowanie sieci wsparcia jest kluczowe dla osób z zespołem Lyncha. Ta sieć może obejmować:53

  • Członków rodziny i przyjaciół
  • Pracowników służby zdrowia
  • Grupy wsparcia dla osób z dziedzicznymi zespołami nowotworowymi
  • Organizacje zajmujące się zespołem Lyncha

Wzajemne wsparcie wśród członków rodziny z zespołem Lyncha może być szczególnie pomocne w motywowaniu do regularnych badań przesiewowych.54

Informowanie członków rodziny

Zespół Lyncha jest dziedziczny, co oznacza, że może być przekazywany przyszłym pokoleniom. Informowanie członków rodziny o pozytywnej diagnozie jest ważnym krokiem.55

Pacjenci z zespołem Lyncha powinni poinformować członków rodziny o swoim rozpoznaniu i zachęcić ich do poddania się poradnictwu genetycznemu. Poradnictwo genetyczne pomaga pacjentom i ich rodzinom zrozumieć ryzyko związane z przekazaniem choroby genetycznej dziecku.56

Proces informowania i testowania członków rodziny osoby z zespołem Lyncha nazywany jest testowaniem kaskadowym. Doradcy genetyczni mogą pomóc członkom rodziny w przeprowadzeniu testów na znaną mutację w rodzinie.57

Koordynacja opieki i monitorowanie długoterminowe

Osoby z zespołem Lyncha wymagają koordynowanej, długoterminowej opieki w celu skutecznego zarządzania ich zwiększonym ryzykiem nowotworów.58

Rola poradni wysokiego ryzyka i specjalistycznych ośrodków

Specjalistyczne poradnie i ośrodki ds. zespołu Lyncha odgrywają kluczową rolę w zapewnianiu kompleksowej opieki pacjentom:59

  • Zapewniają spersonalizowane zalecenia dotyczące badań przesiewowych mających na celu wczesne wykrycie i zapobieganie nowotworom
  • Koordynują coroczne wizyty kontrolne w celu monitorowania zdrowia i zmniejszenia ryzyka nowotworów
  • Omawiają zmiany w historii osobistej lub rodzinnej
  • Informują o interwencjach dotyczących stylu życia
  • Eksplorują kolejne kroki dla członków rodziny

60

Poradnie te współpracują również ściśle z wielodyscyplinarnym zespołem ekspertów ds. nowotworów, w tym chirurgami, onkologami i innymi specjalistami, aby jak najlepiej zarządzać zdrowiem pacjenta.61

Aktualizacja wytycznych i zaleceń

Dziedzina badań genetycznych i leczenia nowotworów stale się rozwija. Ważne jest, aby personel pielęgniarski był na bieżąco z najnowszymi zaleceniami dotyczącymi postępowania u osób z zespołem Lyncha.62

Zaleca się, aby 73% pacjentów otrzymało zalecenie kontaktu z genetyką medyczną w przypadku jakichkolwiek zmian w zaleceniach dotyczących nadzoru i opieki związanej z zespołem Lyncha, ponieważ wytyczne mogą się zmieniać.63

Adherencja do zaleceń i kontynuacja opieki

Przestrzeganie zaleceń dotyczących badań przesiewowych i innych aspektów opieki jest kluczowe dla skutecznego zarządzania zespołem Lyncha. Badania wykazały, że przestrzeganie zaleceń dotyczących kolonoskopii jest wysokie (średnio 81,5%), podczas gdy przestrzeganie innych zaleceń jest bardziej zmienne.64

Personel pielęgniarski może pomóc w poprawie przestrzegania zaleceń poprzez:65

  • Regularne przypominanie pacjentom o badaniach przesiewowych
  • Edukowanie pacjentów na temat znaczenia przestrzegania zaleceń
  • Identyfikowanie i usuwanie barier w przestrzeganiu zaleceń
  • Koordynowanie wizyt i badań przesiewowych w celu ułatwienia przestrzegania zaleceń

Luki w opiece, które zostały zidentyfikowane, podkreślają potrzebę łatwych do wdrożenia ulepszeń koordynacji i standaryzacji opieki dla tej populacji.66

Rola pielęgniarki w opiece nad pacjentem z zespołem Lyncha

Pielęgniarki odgrywają kluczową rolę w kompleksowej opiece nad pacjentami z zespołem Lyncha, pełniąc różnorodne funkcje.67

Edukacja i poradnictwo

Pielęgniarki są w doskonałej pozycji, aby edukować pacjentów na temat zespołu Lyncha i związanego z nim ryzyka nowotworów:68

  • Informowanie pacjentów o naturze zespołu Lyncha i jego dziedziczności
  • Wyjaśnianie znaczenia badań przesiewowych i profilaktyki
  • Omawianie opcji leczenia i redukcji ryzyka
  • Pomaganie pacjentom w zrozumieniu wyników testów genetycznych

Pielęgniarki mogą informować swoich pacjentów o najnowszych badaniach i zaleceniach, w tym o potencjalnych korzyściach z regularnych ćwiczeń, które mogą odgrywać rolę w zapobieganiu nowotworom poprzez stymulowanie adaptacyjnej odporności przeciwnowotworowej.69

Koordynacja opieki i planowanie badań przesiewowych

Pielęgniarki odgrywają kluczową rolę w koordynacji opieki nad pacjentami z zespołem Lyncha:70

  • Planowanie i koordynowanie badań przesiewowych
  • Zapewnianie, że pacjenci otrzymują odpowiednią opiekę od różnych specjalistów
  • Śledzenie wyników badań i przekazywanie ich pacjentom
  • Pomaganie pacjentom w nawigowaniu przez system opieki zdrowotnej

Specjaliści pielęgniarstwa ds. zespołu Lyncha mogą pomóc koordynować skierowania do różnych specjalistów i wizyty kontrolne w oparciu o spersonalizowany plan postępowania.71

Wsparcie psychospołeczne i rzecznictwo

Pielęgniarki często mają bliskie, długotrwałe relacje ze swoimi pacjentami, co stawia je w idealnej pozycji do zapewnienia wsparcia psychospołecznego:72

  • Ocena i zaspokajanie potrzeb emocjonalnych pacjentów
  • Zapewnianie wsparcia pacjentom i ich rodzinom
  • Kierowanie pacjentów do odpowiednich zasobów wsparcia
  • Rzecznictwo na rzecz potrzeb pacjentów w systemie opieki zdrowotnej

Rzecznictwo może być potężnym narzędziem w zarządzaniu zespołem Lyncha. Poprzez rzecznictwo na rzecz siebie i innych, pacjenci mogą pomóc zwiększyć świadomość na temat choroby, wspierać wysiłki badawcze i poprawić dostęp do zasobów i leczenia.73

Kontynuacja rozwoju zawodowego

Biorąc pod uwagę ciągły rozwój wiedzy na temat zespołu Lyncha, pielęgniarki powinny podejmować ciągłe kształcenie w tej dziedzinie:74

  • Udział w kursach i warsztatach dotyczących zespołu Lyncha i dziedzicznych zespołów nowotworowych
  • Śledzenie najnowszych badań i zaleceń
  • Dzielenie się wiedzą z kolegami i pacjentami

Kursy edukacyjne, takie jak „Identyfikacja i zarządzanie zespołem Lyncha”, są dostępne dla pielęgniarek i zaawansowanych praktyków pielęgniarstwa, oferując punkty kontaktowe za ukończenie działań edukacyjnych.75

Modele opieki i programy specjalistyczne

Istnieje wiele modeli opieki i programów specjalistycznych dla pacjentów z zespołem Lyncha, które mogą służyć jako przykłady najlepszych praktyk.76

Centra zespołu Lyncha i programy specjalistyczne

Specjalistyczne centra zespołu Lyncha oferują kompleksową opiekę skoncentrowaną na tej chorobie:77

  • Centrum Zespołu Lyncha w Dana-Farber Cancer Institute – największa i najbardziej kompleksowa multidyscyplinarna grupa genetyki nowotworów w regionie, która specjalizuje się w koordynowaniu opieki nad osobami z zespołem Lyncha. Misją Centrum jest zapewnienie spersonalizowanej i kompleksowej opieki dla rodzin z zespołem Lyncha, wspieranej przez światowej klasy badania i najnowocześniejszą diagnostykę.78
  • Program badań przesiewowych i leczenia zespołu Lyncha w Massachusetts General Hospital – zapewnia ekspercką i trwającą całe życie opiekę dla osób i rodzin dotkniętych zespołem Lyncha oraz upewnia się, że otrzymują one najlepsze możliwe postępowanie medyczne i wsparcie.79
  • Centrum Zespołu Lyncha UCSF – zaangażowane w zapewnienie kompleksowej, multidyscyplinarnej opieki, wsparcia i edukacji dla osób i rodzin dotkniętych zespołem Lyncha. Przyjmuje holistyczne podejście do opieki, zajmując się nie tylko potrzebami medycznymi, ale także oferując wsparcie emocjonalne i edukacyjne.80

Takie specjalistyczne centra oferują skoordynowaną opiekę i indywidualne plany opieki dla pacjentów z zespołem Lyncha poprzez zespół dedykowanych lekarzy, pielęgniarek praktykujących, doradców genetycznych i innych specjalistów ds. zespołu Lyncha.81

Programy wysokiego ryzyka i multidyscyplinarne kliniki

Wiele instytucji oferuje specjalistyczne programy dla pacjentów z wysokim ryzykiem nowotworów, w tym zespołu Lyncha:82

  • Programy GI wysokiego ryzyka – skupiają się na metodach pierwotnej profilaktyki, takich jak kolonoskopia lub badania przesiewowe w kierunku ginekologicznych, formułowanie planów nadzoru i skierowania na interwencję chirurgiczną, jeśli jest to konieczne.83
  • Kliniki onkologii gastroenterologicznej i ginekologicznej – oferują specjalistyczną opiekę dla pacjentów z zespołem Lyncha lub innymi schorzeniami żołądkowo-jelitowymi.84
  • Kliniki dziedzicznej polipowatości – zapewniają ekspercką opiekę dla dzieci z zespołem Lyncha.85

Programy te zapewniają spersonalizowane plany nadzoru i profilaktyki, które uwzględniają historię rodzinną, osobistą historię nowotworów, typ mutacji genetycznej i osobiste preferencje pacjenta.86

Współpraca interdyscyplinarna

Skuteczna opieka nad pacjentami z zespołem Lyncha wymaga ścisłej współpracy między różnymi specjalistami:87

  • Lekarze i inni pracownicy służby zdrowia w Mayo Clinic pracują w zespołach, aby zapewnić spersonalizowaną opiekę osobom z zespołem Lyncha
  • Zespoły opieki w Mayo Clinic mają rozległe doświadczenie w opiece nad osobami z zespołem Lyncha i innymi rodzinnymi zespołami nowotworowymi
  • Zespoły opieki są przygotowane z wiedzą i zasobami, aby zapewnić pacjentom dokładnie taką opiekę, jakiej potrzebują

88

Wielodyscyplinarne konferencje specjalistów ds. nowotworów spotykają się regularnie, aby omawiać złożone przypadki, co zapewnia najlepszą opiekę dla pacjentów takich jak osoby z zespołem Lyncha.89

Aktualne wyzwania i kierunki przyszłych badań

Pomimo postępów w diagnostyce i leczeniu zespołu Lyncha, nadal istnieją pewne wyzwania i obszary wymagające dalszych badań.90

Niedostateczna diagnoza i świadomość

Zespół Lyncha pozostaje w dużej mierze niedodiagnozowany pomimo swojej częstości występowania:91

  • Szacuje się, że ponad milion Amerykanów ma zespół Lyncha, ale tylko 5% z nich zostało zdiagnozowanych
  • Badania wykazały, że od 65% do 85% programów nowotworowych w szpitalach lokalnych nie przeprowadza badań przesiewowych w kierunku tego zespołu
  • Tylko 1 na 4 osoby, które spełniały kryteria, zostały poddane badaniom przesiewowym w sieci badań nad nowotworami

92

Zwiększenie świadomości wśród pracowników służby zdrowia i społeczności jest kluczowe dla poprawy wskaźników diagnozowania.93

Koordynacja opieki zdrowotnej

Stałym wyzwaniem zgłaszanym przez osoby z zespołem Lyncha jest brak spójnej i skoordynowanej opieki zdrowotnej, która pomogłaby im zarządzać swoim stanem ogólnie, a konkretnie w kontekście chemoprewencji aspiryną.94

Podstawowa opieka zdrowotna jest często pierwszym punktem kontaktu dla pacjentów po diagnozie i w ramach bieżącej opieki. Kluczową rolą lekarzy podstawowej opieki zdrowotnej jest ocena odpowiedniości pacjentów do codziennego przyjmowania aspiryny w celu zapobiegania rakowi jelita grubego, zgodnie z zaleceniami Narodowego Instytutu Zdrowia i Doskonałości Opieki (NICE) dla osób z zespołem Lyncha.95

Potrzebna jest lepsza komunikacja z opieki specjalistycznej i wysokospecjalistycznej, aby umożliwić spójne kodowanie zespołu Lyncha w dokumentacji medycznej pacjentów i aby podstawowa opieka zdrowotna mogła pełnić swoją rolę jako ogniwo kompleksowej opieki.96

Nowe badania i innowacje

Badania i innowacje w dziedzinie zespołu Lyncha nadal się rozwijają:97

  • W Weill Cornell Medicine trwa obecnie badanie mające na celu zbadanie zależnego od genów zarządzania ryzykiem w zespole Lyncha i jak najlepiej zarządzać i badać ludzi w oparciu o ich indywidualne mutacje genetyczne
  • Celem jest identyfikacja, poprzez narzędzia oceny ryzyka, jak największej liczby „previvorów” (osób z predyspozycją genetyczną, które nie rozwinęły nowotworu), aby zaoferować im prewencyjne badania przesiewowe, wczesne wykrywanie i strategie prewencyjne
  • Narzędzie PREM, które jest objęte ubezpieczeniem, zostało włączone do krajowych wytycznych ustanowionych w celu pomocy w identyfikacji pacjentów z nowotworami, ale także osób nie dotkniętych chorobą, które na podstawie historii rodzinnej skorzystałyby z oceny genetycznej i testów

98

Ostatnie badania sugerowały również, że rak piersi może być włączony do spektrum nowotworów związanych z zespołem Lyncha.99

Również immunoterapia postawiła zespół Lyncha na mapie kilka lat temu. Osoby z niestabilnymi mikrosatelitarnie guzami (i/lub guzami, które nie wykazują ekspresji któregokolwiek z białek zespołu Lyncha) częściej reagują na leczenie immunoterapią.100101

Wnioski i zalecenia praktyczne

Zespół Lyncha jest jednym z najczęstszych dziedzicznych zespołów nowotworowych, dotykającym około 1 na 279-400 osób. Opieka nad pacjentami z tym zespołem wymaga kompleksowego, multidyscyplinarnego podejścia, z kluczową rolą personelu pielęgniarskiego.102

Kluczowe zalecenia dla opieki pielęgniarskiej nad pacjentami z zespołem Lyncha obejmują:103104

  • Identyfikacja pacjentów, którzy mogliby skorzystać z poradnictwa genetycznego poprzez dokładną ocenę historii rodzinnej
  • Zapewnienie kompleksowej edukacji na temat zespołu Lyncha, związanego z nim ryzyka nowotworów oraz dostępnych opcji badań przesiewowych i profilaktyki
  • Koordynacja badań przesiewowych i nadzoru, w tym kolonoskopii co 1-2 lata, badań ginekologicznych i innych odpowiednich badań przesiewowych
  • Ocena i zaspokajanie potrzeb psychospołecznych pacjentów i ich rodzin
  • Wspieranie pacjentów w podejmowaniu świadomych decyzji dotyczących profilaktycznych zabiegów chirurgicznych i innych strategii zmniejszania ryzyka
  • Promowanie zdrowego stylu życia, w tym aktywności fizycznej, zdrowej diety i unikania palenia tytoniu
  • Ułatwianie komunikacji rodzinnej i testowania kaskadowego, aby zidentyfikować innych członków rodziny z ryzykiem
  • Koordynacja opieki multidyscyplinarnej i zapewnienie ciągłości opieki

Wczesna identyfikacja osób z zespołem Lyncha i ich zagrożonych członków rodziny ma kluczowe znaczenie dla wdrożenia skutecznych strategii zapobiegania nowotworom.105

Poprzez kompleksową opiekę pielęgniarską i multidyscyplinarne podejście, osoby z zespołem Lyncha mogą znacznie zmniejszyć swoje ryzyko rozwoju nowotworów i poprawić swoje długoterminowe wyniki zdrowotne.106

Kolejne rozdziały

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Wybierz kolejny rozdział z menu poniżej, aby otworzyć nową podstronę kompedium wiedzy i uzyskać szczegółowe informację o leku, substancji lub chorobie.

  1. 09.04.2026
  2. www.leksykon.com.pl

Materiały źródłowe

  • #1 Lynch Syndrome Cancers & Genetic Testing | Memorial Sloan Kettering Cancer Center
    https://www.mskcc.org/cancer-care/risk-assessment-screening/genetic-counseling-and-testing/hereditary-cancer-genes-and-hereditary-cancer-syndromes/lynch-syndrome
    Lynch syndrome, previously called hereditary nonpolyposis colorectal cancer, is one of the most common hereditary cancer syndromes. A person is diagnosed with Lynch syndrome if they inherit a mutation in the MLH1, MSH2, MSH6, PMS2, or EPCAM genes. […] Women with Lynch syndrome have an elevated risk of developing uterine (endometrial) cancer or ovarian cancer. […] It is important to understand that having Lynch syndrome does not mean that a person will develop cancer. It only means that they have an increased risk of developing certain types of cancers. […] We recommend that people with Lynch syndrome pursue specialized cancer surveillance examinations. This includes colonoscopy, upper endoscopy, and urine testing. […] Recommendations on the best way for you to manage your individual cancer risk should be discussed with a genetic counselor or doctor who is experienced in the care of people with Lynch syndrome.
  • #2 Understanding Lynch syndrome: implications for nursing – PubMed
    https://pubmed.ncbi.nlm.nih.gov/17623626/
    Colorectal cancer (CRC) is the second-leading cause of cancer-related death in the United States. Approximately 10% of CRC is hereditary, and hereditary nonpolyposis CRC (HNPCC), or Lynch syndrome I, is the most common form. […] Nursing care for patients with Lynch syndrome includes identifying patients who would benefit from genetic counseling, providing education, and assessing and meeting patient psychosocial needs.
  • #3 Learning he has Lynch syndrome empowered him to be proactive about his health | MUSC Hollings Cancer Center
    https://hollingscancercenter.musc.edu/news/archive/2025/03/27/learning-he-has-lynch-syndrome-empowered-him-to-be-proactive-about-his-health
    Learning he has Lynch syndrome empowered him to be proactive about his health. […] Thomas was one of the 1 out of 279 people in the U.S. with Lynch Syndrome. […] People with Lynch syndrome have a higher risk of developing colorectal cancer as well as stomach, small intestine and liver cancer, among others, and, for women, a higher risk of ovarian and endometrial cancer. […] The clinic helps people to manage their genetic cancer risks. […] Some may have more frequent screenings or additional screenings that aren’t recommended for average-risk people. […] Thomas is on a schedule of yearly colonoscopies to check for colorectal cancer, every-other-year endoscopies to examine his stomach and regular urinalysis. […] The Hereditary Cancer Clinic also works with family members of patients to ensure that they receive genetic testing to see if they’re also at risk. […] It’s good to know your family history, to get genetic testing and then do the proper screening. […] Obviously, I’m at high risk for certain cancers, but I would rather be proactive and do the screenings.
  • #4 Keys to identifying Lynch syndrome
    https://www.contemporaryobgyn.net/view/keys-identifying-lynch-syndrome
    Lynch syndrome is an autosomal-dominant hereditary cancer syndrome that has the same incidence in the general population as the BRCA1/2 gene cancer syndrome: 1 in 400 people. […] In the United States, it is projected that 1 million people have Lynch syndrome, yet only 5% of them have currently been diagnosed. […] To identify these high-risk families before they receive a cancer diagnosis is truly practicing preventive medicine. Ob/gyns are uniquely positioned to identify these families before they develop cancer. […] For ob/gyns, it is especially important to diagnose patients with Lynch syndrome, as a study from MD Anderson in 2005 reported that up to 71% of women identified as having it will acquire endometrial cancer (20% risk by age 50) and 12% will acquire ovarian cancer. […] Due to an increased risk of both endometrial and ovarian cancers, it is important that ob/gyns be aware of the cancers associated with Lynch syndrome when taking a cancer family history of their patients.
  • #5 Lynch Syndrome: Signs/Symptoms, Causes, Outlook
    https://my.clevelandclinic.org/health/diseases/17195-lynch-syndrome-and-hnpcc
    Lynch syndrome is a genetic condition that can lead to cancer. People with Lynch syndrome often get cancer before age 50 and should undergo lifelong cancer screenings to detect and treat cancer early. […] Individuals diagnosed with Lynch syndrome should tell their family members and encourage them to seek genetic counseling. Genetic counseling helps you and your family understand the risks of having a child with a genetic condition. Counseling includes an evaluation of their personal and family history as well as and genetic testing for the Lynch syndrome gene mutation. […] Treatment for Lynch syndrome focuses on detecting cancer and surgically removing it from your body. […] Its highly recommended that you receive expert care for your diagnosis. Because Lynch syndrome can affect many organ systems, the care team will include a variety of clinicians. Team members may include gastroenterologists, surgeons, gynecologic oncologists, urologists, dermatologists, gynecologists, primary care physicians, geneticists, genetic counselors and oncologists. […] If you have Lynch syndrome, its important that you visit your healthcare provider for annual checkups and work with your provider to schedule regular screening tests to detect cancer early.
  • #6 Lynch syndrome (hereditary nonpolyposis colorectal cancer): Cancer screening and management – UpToDate
    https://www.uptodate.com/contents/lynch-syndrome-hereditary-nonpolyposis-colorectal-cancer-cancer-screening-and-management
    Individuals with Lynch syndrome have an increased risk of colorectal and endometrial cancer. Other sites of cancer include the ovary, stomach, small bowel, pancreatobiliary system, genitourinary system (urothelial cancer), prostate, brain, and skin. There may also be an increased risk of breast cancer in individuals with Lynch syndrome. […] This topic will review recommendations for screening and surveillance of individuals with Lynch syndrome and their families. Guidelines for cancer screening in patients diagnosed with Lynch syndrome have been proposed by several groups including: the American College of Gastroenterology, United States Multi-Society Task Force on Colorectal Cancer, European Hereditary Tumor Group, the Manchester International Consensus Group, the British Society of Gastroenterology, the European Society of Medical Oncology, American Society of Clinical Oncology, and National Comprehensive Cancer Network. Our recommendations are largely consistent with these guidelines. […] Several important measures are appropriate for all patients with Lynch syndrome including: Health maintenance.
  • #7 Understanding Lynch syndrome: implications for nursing – PubMed
    https://pubmed.ncbi.nlm.nih.gov/17623626/
    Colorectal cancer (CRC) is the second-leading cause of cancer-related death in the United States. Approximately 10% of CRC is hereditary, and hereditary nonpolyposis CRC (HNPCC), or Lynch syndrome I, is the most common form. […] Nursing care for patients with Lynch syndrome includes identifying patients who would benefit from genetic counseling, providing education, and assessing and meeting patient psychosocial needs.
  • #8 Understanding Lynch Syndrome: Implications for Nursing | Oncology Nursing Society
    https://www.ons.org/publications-research/cjon/11/3/understanding-lynch-syndrome-implications-nursing
    Colorectal cancer (CRC) is the second-leading cause of cancer-related death in the United States. […] Nursing care for patients with Lynch syndrome includes identifying patients who would benefit from genetic counseling, providing education, and assessing and meeting patient psychosocial needs.
  • #9 Lynch syndrome: Identifying patients at risk for HNPCC – Oncology Nurse Advisor
    https://www.oncologynurseadvisor.com/features/lynch-syndrome-identifying-patients-at-risk-for-hnpcc/
    Identifying families at risk improves screening and counseling of patients at risk for hereditary nonpolyposis colorectal cancer. […] Oncology nurses are essential in this step as they often have a close, ongoing relationship with their patients. […] This article provides a review of the current knowledge about Lynch syndrome, an overview of high-risk patient management, and strategies for identifying patients who are candidates for genetic evaluation. […] Assessment for Lynch syndrome begins with a thorough family cancer history that includes at least three generations of both maternal and paternal first-, second-, and third-degree relatives. […] Patients who meet the revised Bethesda criteria should be referred for further genetic evaluation, especially those patients with a personal history of colorectal cancer at younger than 50 years or who have had another Lynch syndrome-related cancer such as endometrial, ovarian, stomach, urinary tract, or pancreatic cancer. […] When in doubt, or if the patient expresses a concern for hereditary cancer, refer the patient for genetic counseling.
  • #10 Lynch syndrome: Identifying patients at risk for HNPCC – Oncology Nurse Advisor
    https://www.oncologynurseadvisor.com/features/lynch-syndrome-identifying-patients-at-risk-for-hnpcc/
    Identifying families at risk improves screening and counseling of patients at risk for hereditary nonpolyposis colorectal cancer. […] Oncology nurses are essential in this step as they often have a close, ongoing relationship with their patients. […] This article provides a review of the current knowledge about Lynch syndrome, an overview of high-risk patient management, and strategies for identifying patients who are candidates for genetic evaluation. […] Assessment for Lynch syndrome begins with a thorough family cancer history that includes at least three generations of both maternal and paternal first-, second-, and third-degree relatives. […] Patients who meet the revised Bethesda criteria should be referred for further genetic evaluation, especially those patients with a personal history of colorectal cancer at younger than 50 years or who have had another Lynch syndrome-related cancer such as endometrial, ovarian, stomach, urinary tract, or pancreatic cancer. […] When in doubt, or if the patient expresses a concern for hereditary cancer, refer the patient for genetic counseling.
  • #11 Lynch syndrome: Identifying patients at risk for HNPCC – Oncology Nurse Advisor
    https://www.oncologynurseadvisor.com/features/lynch-syndrome-identifying-patients-at-risk-for-hnpcc/
    Identifying families at risk improves screening and counseling of patients at risk for hereditary nonpolyposis colorectal cancer. […] Oncology nurses are essential in this step as they often have a close, ongoing relationship with their patients. […] This article provides a review of the current knowledge about Lynch syndrome, an overview of high-risk patient management, and strategies for identifying patients who are candidates for genetic evaluation. […] Assessment for Lynch syndrome begins with a thorough family cancer history that includes at least three generations of both maternal and paternal first-, second-, and third-degree relatives. […] Patients who meet the revised Bethesda criteria should be referred for further genetic evaluation, especially those patients with a personal history of colorectal cancer at younger than 50 years or who have had another Lynch syndrome-related cancer such as endometrial, ovarian, stomach, urinary tract, or pancreatic cancer. […] When in doubt, or if the patient expresses a concern for hereditary cancer, refer the patient for genetic counseling.
  • #12 An Essential Guide to Lynch Syndrome for Patients & Families – Lynsight
    https://lynsightlabs.com/an-essential-guide-to-lynch-syndrome-for-patients-families/
    Lynch syndrome is a hereditary condition that increases the risk of many types of cancer. Facing a positive Lynch syndrome diagnosis is challenging – and sometimes confusing. Here’s what you need to know. […] One of the most critical steps after a positive Lynch syndrome diagnosis is to engage in genetic counseling. Genetic counselors are specialists who provide information about genetic conditions, helping you understand your risks and the implications for your family. They can guide you through genetic testing, interpret results and discuss preventive measures and screening options tailored to your specific situation. […] A positive Lynch syndrome diagnosis can have a significant emotional toll. The fear of potential cancers and the impact on your family’s future can be daunting. It’s important to acknowledge these feelings and find healthy ways to cope. Talking to a mental health professional can be incredibly beneficial in managing anxiety and stress.
  • #13 How to Manage a Patient with Lynch Syndrome | Kailos Genetics
    http://www.kailosgenetics.com/kailos-academy/how-manage-patient-lynch-syndrome
    Women may consider having a hysterectomy and oophorectomy as a preventative measure. […] A certified genetic counselor (GC) is often a good person to review Lynch syndrome with a patient. […] Whatever clinician is interacting with a Lynch syndrome patient should be upfront about the information available, allowing a patient to make an educated decision about their care moving forward.
  • #14 Keys to identifying Lynch syndrome
    https://www.contemporaryobgyn.net/view/keys-identifying-lynch-syndrome
    Once a patient with Lynch syndrome has completed child-bearing, it is appropriate to counsel her to consider a prophylactic hysterectomy and bilateral salpingo-oophorectomy. […] Women with Lynch syndrome who have not completed child-bearing should be followed carefully with endometrial biopsies every 1 to 2 years, starting at age 30 to 35. […] It cannot be emphasized enough that taking a careful cancer family history is the most effective way for a clinician to evaluate a patient for risk of having Lynch syndrome. […] If a patient’s personal or family history is suggestive of Lynch Syndrome, diagnostic genetic testing should be considered to confirm the diagnosis. […] Ordering a hereditary cancer panel that will test for multiple cancer syndromes at one time is now the standard of care. […] Ob/gyns are well-positioned to identify women who may have Lynch syndrome by routinely obtaining a cancer family history from their patients. […] They can then discuss the importance of genetic testing with patients who may possibly meet the criteria for Lynch syndrome.
  • #15 Lynch syndrome | Cancer Institute NSW
    https://www.cancer.nsw.gov.au/what-we-do/supporting-cancer-care/hereditary-cancers/lynch-syndrome
    If you are a member of a family affected by Lynch syndrome you should have regular bowel screening, usually beginning in your early to mid20s. […] Other check-ups, surgery, or treatment may be advised depending on your personal history and/or family history and should be discussed with your doctor. […] Genetic testing involves a blood test. The initial genetic testing in a family (called a mutation search) must be done in someone in the family who has developed a Lynch syndrome cancer. […] If a family mutation is found, the rest of the family can be offered predictive testing. This means testing to see if you have inherited Lynch syndrome, even though you may not have any signs or symptoms yet.
  • #16 Understanding Lynch syndrome: implications for nursing – PubMed
    https://pubmed.ncbi.nlm.nih.gov/17623626/
    Colorectal cancer (CRC) is the second-leading cause of cancer-related death in the United States. Approximately 10% of CRC is hereditary, and hereditary nonpolyposis CRC (HNPCC), or Lynch syndrome I, is the most common form. […] Nursing care for patients with Lynch syndrome includes identifying patients who would benefit from genetic counseling, providing education, and assessing and meeting patient psychosocial needs.
  • #17 Lynch Syndrome: Signs/Symptoms, Causes, Outlook
    https://my.clevelandclinic.org/health/diseases/17195-lynch-syndrome-and-hnpcc
    Lynch syndrome is a genetic condition that can lead to cancer. People with Lynch syndrome often get cancer before age 50 and should undergo lifelong cancer screenings to detect and treat cancer early. […] Individuals diagnosed with Lynch syndrome should tell their family members and encourage them to seek genetic counseling. Genetic counseling helps you and your family understand the risks of having a child with a genetic condition. Counseling includes an evaluation of their personal and family history as well as and genetic testing for the Lynch syndrome gene mutation. […] Treatment for Lynch syndrome focuses on detecting cancer and surgically removing it from your body. […] Its highly recommended that you receive expert care for your diagnosis. Because Lynch syndrome can affect many organ systems, the care team will include a variety of clinicians. Team members may include gastroenterologists, surgeons, gynecologic oncologists, urologists, dermatologists, gynecologists, primary care physicians, geneticists, genetic counselors and oncologists. […] If you have Lynch syndrome, its important that you visit your healthcare provider for annual checkups and work with your provider to schedule regular screening tests to detect cancer early.
  • #18 Lynch Syndrome Cancers & Genetic Testing | Memorial Sloan Kettering Cancer Center
    https://www.mskcc.org/cancer-care/risk-assessment-screening/genetic-counseling-and-testing/hereditary-cancer-genes-and-hereditary-cancer-syndromes/lynch-syndrome
    Lynch syndrome, previously called hereditary nonpolyposis colorectal cancer, is one of the most common hereditary cancer syndromes. A person is diagnosed with Lynch syndrome if they inherit a mutation in the MLH1, MSH2, MSH6, PMS2, or EPCAM genes. […] Women with Lynch syndrome have an elevated risk of developing uterine (endometrial) cancer or ovarian cancer. […] It is important to understand that having Lynch syndrome does not mean that a person will develop cancer. It only means that they have an increased risk of developing certain types of cancers. […] We recommend that people with Lynch syndrome pursue specialized cancer surveillance examinations. This includes colonoscopy, upper endoscopy, and urine testing. […] Recommendations on the best way for you to manage your individual cancer risk should be discussed with a genetic counselor or doctor who is experienced in the care of people with Lynch syndrome.
  • #19 Lynch Syndrome: Signs/Symptoms, Causes, Outlook
    https://my.clevelandclinic.org/health/diseases/17195-lynch-syndrome-and-hnpcc
    Lynch syndrome is a genetic condition that can lead to cancer. People with Lynch syndrome often get cancer before age 50 and should undergo lifelong cancer screenings to detect and treat cancer early. […] Individuals diagnosed with Lynch syndrome should tell their family members and encourage them to seek genetic counseling. Genetic counseling helps you and your family understand the risks of having a child with a genetic condition. Counseling includes an evaluation of their personal and family history as well as and genetic testing for the Lynch syndrome gene mutation. […] Treatment for Lynch syndrome focuses on detecting cancer and surgically removing it from your body. […] Its highly recommended that you receive expert care for your diagnosis. Because Lynch syndrome can affect many organ systems, the care team will include a variety of clinicians. Team members may include gastroenterologists, surgeons, gynecologic oncologists, urologists, dermatologists, gynecologists, primary care physicians, geneticists, genetic counselors and oncologists. […] If you have Lynch syndrome, its important that you visit your healthcare provider for annual checkups and work with your provider to schedule regular screening tests to detect cancer early.
  • #20 Lynch Syndrome: Signs/Symptoms, Causes, Outlook
    https://my.clevelandclinic.org/health/diseases/17195-lynch-syndrome-and-hnpcc
    Lynch syndrome is a genetic condition that can lead to cancer. People with Lynch syndrome often get cancer before age 50 and should undergo lifelong cancer screenings to detect and treat cancer early. […] Individuals diagnosed with Lynch syndrome should tell their family members and encourage them to seek genetic counseling. Genetic counseling helps you and your family understand the risks of having a child with a genetic condition. Counseling includes an evaluation of their personal and family history as well as and genetic testing for the Lynch syndrome gene mutation. […] Treatment for Lynch syndrome focuses on detecting cancer and surgically removing it from your body. […] Its highly recommended that you receive expert care for your diagnosis. Because Lynch syndrome can affect many organ systems, the care team will include a variety of clinicians. Team members may include gastroenterologists, surgeons, gynecologic oncologists, urologists, dermatologists, gynecologists, primary care physicians, geneticists, genetic counselors and oncologists. […] If you have Lynch syndrome, its important that you visit your healthcare provider for annual checkups and work with your provider to schedule regular screening tests to detect cancer early.
  • #21 Lynch Syndrome Center | Dana-Farber Cancer Institute
    https://www.dana-farber.org/cancer-care/treatment/cancer-genetics/syndromes-genes-programs/lynch-syndrome
    Matthew Yurgelun, MD, a gastrointestinal medical oncologist and Director of the Lynch Syndrome Center at Dana-Farber Cancer Institute describes how the Center provides coordination of care and individual care plans for Lynch syndrome patients through a team of dedicated physicians, nurse practitioners, genetic counselors and other Lynch syndrome specialists. […] Our scheduling staff and Lynch syndrome nursing experts can help coordinate your multidisciplinary referrals and follow-up appointments, based on your personalized management plan.
  • #22 Managing Lynch Syndrome | Lynch Syndrome Center
    https://lynchsyndromecenter.ucsf.edu/managing-lynch-syndrome
    In this section we will discuss screening, surgery and cancer prevention strategies. […] A diagnosis of Lynch syndrome requires vigilance in order to prevent and detect cancer at an early stage. Because Lynch syndrome is associated with an increased risk of cancer, its important to carefully follow screening guidelines and take steps to modify lifestyle and prevent cancer. […] If youve been diagnosed with Lynch syndrome, your physician and genetic counselor will likely recommend a specific screening program for you. Screening tests are tests that are designed to detect cancer prior to the presence of any symptoms. Screening for cancer helps ensure that cancer is detected in its earliest stages when it is most treatable. […] The National Comprehensive Cancer Network (NCCN) provides a set of screening guidelines for individuals with Lynch syndrome.
  • #23 Managing Lynch Syndrome | Lynch Syndrome Center
    https://lynchsyndromecenter.ucsf.edu/managing-lynch-syndrome
    Individuals with Lynch syndrome are recommended to begin screening for colorectal cancer at a much younger age than the general population. […] Individuals with Lynch syndrome are advised to undergo colonoscopy screening every 1-2 years. […] During a colonoscopy, a physician inserts a long, flexible tube that is attached to a camera through the rectum in order to examine the internal lining of the colon and rectum for polyps (precancerous growths) or other abnormalities. […] Individuals with Lynch syndrome tend to develop polyps that are more difficult to detect, which may require the use of newer colonoscopy techniques, such as chromoendoscopy, which uses dye to color colon tissue and help detect flat polyps. […] According to the NCCN guidelines, upper endoscopy GI surveillance with EGD starting at age 30-40 years and repeated every 2-4 years is recommended.
  • #24 Managing Lynch Syndrome | Lynch Syndrome Center
    https://lynchsyndromecenter.ucsf.edu/managing-lynch-syndrome
    Individuals with Lynch syndrome are recommended to begin screening for colorectal cancer at a much younger age than the general population. […] Individuals with Lynch syndrome are advised to undergo colonoscopy screening every 1-2 years. […] During a colonoscopy, a physician inserts a long, flexible tube that is attached to a camera through the rectum in order to examine the internal lining of the colon and rectum for polyps (precancerous growths) or other abnormalities. […] Individuals with Lynch syndrome tend to develop polyps that are more difficult to detect, which may require the use of newer colonoscopy techniques, such as chromoendoscopy, which uses dye to color colon tissue and help detect flat polyps. […] According to the NCCN guidelines, upper endoscopy GI surveillance with EGD starting at age 30-40 years and repeated every 2-4 years is recommended.
  • #25 Diagnosis and management of Lynch syndrome – American Gastroenterological AssociationAGA Logo_Horizontal
    https://gastro.org/clinical-guidance/diagnosis-and-management-of-lynch-syndrome/
    4. AGA suggests that in patients with colorectal cancer with IHC absent for MLH1, second-stage tumor testing for a BRAF mutation or for hypermethylation of the MLH1 promoter should be performed rather than proceeding directly to germline genetic testing. […] 5. AGA recommends surveillance colonoscopy (versus doing nothing) in persons with Lynch syndrome. […] 6. AGA suggests that surveillance colonoscopy should be performed every 1 to 2 years versus less frequent intervals. […] 7. AGA suggests that aspirin be offered for cancer prevention in patients with Lynch syndrome.
  • #26 Lynch Syndrome: Reducing the Risk of Cancer with Genetic Precision – Advances for Medical Professionals | NewYork-Presbyterian
    https://www.nyp.org/publications/professional-advances/gastro/lynch-syndrome-reducing-the-risk-of-cancer
    Surveillance colonoscopy exams to identify polyps have been shown to decrease incidence and mortality for colorectal cancer in this patient population. […] The early identification of individuals with Lynch syndrome and their at-risk family members is crucial for the implementation of effective cancer prevention strategies. […] At Weill Cornell Medicine a study is currently underway to investigate gene-dependent management of risk in Lynch syndrome and how to best manage and screen people based on their individual genetic mutations. […] The goal is to identify, through these risk assessment tools, as many previvors as we can to offer them preventative screening, early detection, and preventative strategies. […] The tool, PREM, which is covered by insurance, has been incorporated into national guidelines established to help identify patients with cancer, but also unaffected individuals who, based on their family history, would benefit from genetic evaluation and testing.
  • #27 Managing Lynch Syndrome | Lynch Syndrome Center
    https://lynchsyndromecenter.ucsf.edu/managing-lynch-syndrome
    Although women with Lynch syndrome are at an increased risk of developing uterine cancer, the NCCN guidelines state that because there is no clear evidence to support screening for uterine cancer in this population. […] Some women with Lynch syndrome, particularly those with a family history of uterine cancer, choose to undergo an annual endometrial biopsy during their annual pelvic exam. […] Because ovarian cancers begin deep in the pelvis, they often do not cause any symptoms until they are at an advanced stage. […] The NCCN has determined that screening may be considered at the clinicians discretion. […] Some physicians choose to use both transvaginal ultrasound and the serum CA-125 test together in order to screen for ovarian cancer in women with Lynch syndrome. […] Surgeries that are performed to remove at-risk organs prior to the development of cancer are called risk-reducing (or prophylactic) surgeries.
  • #28 Women With Lynch – Fight Lynch Syndrome
    https://fightlynch.org/families/women-lynch-syndrome/
    While women with Lynch Syndrome have a high risk of colon cancer, they also have an increased risk of getting endometrial (uterine) and ovarian cancers and of getting it at an earlier age. Because endometrial and ovarian cancers often occur without any symptoms, they can advance to an incurable stage unless active early-detection steps are taken. […] If you are a woman with the Lynch Syndrome gene, experts suggest that you: Look for abnormal bleeding, unusual periods, lower abdominal pain, pelvic cramping, or unusual fatigue and report these symptoms to your doctor. Obtain regular medical care and get an annual pelvic exam. Tell your health care provider that you have Lynch Syndrome and discuss any symptoms. Starting at age 30 (or sooner based on family history), get an annual endometrial biopsy (a small tissue sample taken from the lining of the uterus) and an ultrasound of the uterus and ovaries.
  • #29 Lynch Syndrome | Conditions | UCSF Health
    https://www.ucsfhealth.org/conditions/lynch-syndrome
    While there is no established screening for endometrial cancer at this time, given the high risk of developing the disease in women with Lynch syndrome, the following may be recommended: Endometrial biopsy every year beginning at age 30 to 35. An endometrial biopsy is necessary in women with Lynch syndrome who report abnormal symptoms such as irregular vaginal bleeding or post-menopausal bleeding. […] Surgery may be recommended to patients with colorectal cancer who test positive for Lynch syndrome in order to prevent additional cancer. For instance, if you have colorectal cancer and test positive for Lynch syndrome, it may be recommended to remove the majority of your colon at the time of your surgery for colon cancer, which would reduce your risk of developing another primary colorectal cancer tumor from 40 percent to 1 percent. Likewise, female patients with colorectal cancer may also want to consider having their uterus and ovaries removed to prevent the occurrence of endometrial and ovarian cancer associated with Lynch syndrome. […] Your counselors and doctors can help you decide which treatment option is the best for you.
  • #30 Lynch Syndrome | Conditions | UCSF Health
    https://www.ucsfhealth.org/conditions/lynch-syndrome
    While there is no established screening for endometrial cancer at this time, given the high risk of developing the disease in women with Lynch syndrome, the following may be recommended: Endometrial biopsy every year beginning at age 30 to 35. An endometrial biopsy is necessary in women with Lynch syndrome who report abnormal symptoms such as irregular vaginal bleeding or post-menopausal bleeding. […] Surgery may be recommended to patients with colorectal cancer who test positive for Lynch syndrome in order to prevent additional cancer. For instance, if you have colorectal cancer and test positive for Lynch syndrome, it may be recommended to remove the majority of your colon at the time of your surgery for colon cancer, which would reduce your risk of developing another primary colorectal cancer tumor from 40 percent to 1 percent. Likewise, female patients with colorectal cancer may also want to consider having their uterus and ovaries removed to prevent the occurrence of endometrial and ovarian cancer associated with Lynch syndrome. […] Your counselors and doctors can help you decide which treatment option is the best for you.
  • #31 Managing Lynch Syndrome | Lynch Syndrome Center
    https://lynchsyndromecenter.ucsf.edu/managing-lynch-syndrome
    Individuals with Lynch syndrome are recommended to begin screening for colorectal cancer at a much younger age than the general population. […] Individuals with Lynch syndrome are advised to undergo colonoscopy screening every 1-2 years. […] During a colonoscopy, a physician inserts a long, flexible tube that is attached to a camera through the rectum in order to examine the internal lining of the colon and rectum for polyps (precancerous growths) or other abnormalities. […] Individuals with Lynch syndrome tend to develop polyps that are more difficult to detect, which may require the use of newer colonoscopy techniques, such as chromoendoscopy, which uses dye to color colon tissue and help detect flat polyps. […] According to the NCCN guidelines, upper endoscopy GI surveillance with EGD starting at age 30-40 years and repeated every 2-4 years is recommended.
  • #32 Lynch Syndrome | Genetics and Hereditary Cancers | UT Southwestern Medical Center
    https://utswmed.org/conditions-treatments/genetics-and-hereditary-cancers/lynch-syndrome/
    Our gynecology oncology specialists work with patients to determine appropriate risk management for hereditary gynecologic cancers. […] Our specialists follow NCCN recommendations, including: Removal of ovaries and uterus after childbearing is complete. […] UT Southwestern experts in internal medicine, surgical oncology, and other specialties may also be an important part of the care team. […] Additional surveillance or management recommendations might include: Consideration of annual urinalysis beginning at age 30-35. […] Consideration of additional screenings or starting screenings at a younger age, depending on personal risk factors and family history.
  • #33 Lynch syndrome – Diagnosis and treatment – Mayo Clinic
    https://www.mayoclinic.org/diseases-conditions/lynch-syndrome/diagnosis-treatment/drc-20374719
    Our caring team of Mayo Clinic experts can help you with your Lynch syndrome-related health concerns. […] There’s no cure for Lynch syndrome. People with Lynch syndrome often have tests to look for early signs of cancer. If cancer is found when it’s small, treatment is more likely to be successful. […] Cancer screening tests are tests that look for signs of cancer in people who don’t have any cancer symptoms. […] You might need other tests if your family has a history of other types of cancer. Ask your healthcare professional about which tests are best for you. […] Some research suggests that taking a daily aspirin may lower the risk of cancer in people with Lynch syndrome. […] In certain situations, you might consider surgery or treatments to prevent cancer. Discuss the benefits and risks with your healthcare professional.
  • #34 Managing Lynch Syndrome | Lynch Syndrome Center
    https://lynchsyndromecenter.ucsf.edu/managing-lynch-syndrome
    Some people opt to undergo risk-reducing surgery in order to prevent cancer. […] A hysterectomy refers to surgical removal of the uterus. […] An oophorectomy is a surgical procedure to remove the ovaries, which reduces the risk of ovarian cancer. […] The best way to treat cancer is to prevent it from occurring in the first place. […] Because Lynch syndrome increases the risk of certain types of cancer, preventive strategies are of the utmost importance. […] Some research indicates that daily aspirin may be a viable preventive strategy for individuals with Lynch syndrome. […] The Cancer and Steroid Hormone Study (CASH) demonstrated that use of oral contraceptives can reduce the risk of endometrial cancer by 50%. […] While diet and exercise are not a remedy for disease, they do contribute to overall health. […] If you have Lynch syndrome and are planning to start or grow your family, there are options for preimplantation genetic diagnosis (PGD) assisted reproduction to reduce the risk of passing on this condition.
  • #35 Managing Lynch Syndrome | Lynch Syndrome Center
    https://lynchsyndromecenter.ucsf.edu/managing-lynch-syndrome
    Although women with Lynch syndrome are at an increased risk of developing uterine cancer, the NCCN guidelines state that because there is no clear evidence to support screening for uterine cancer in this population. […] Some women with Lynch syndrome, particularly those with a family history of uterine cancer, choose to undergo an annual endometrial biopsy during their annual pelvic exam. […] Because ovarian cancers begin deep in the pelvis, they often do not cause any symptoms until they are at an advanced stage. […] The NCCN has determined that screening may be considered at the clinicians discretion. […] Some physicians choose to use both transvaginal ultrasound and the serum CA-125 test together in order to screen for ovarian cancer in women with Lynch syndrome. […] Surgeries that are performed to remove at-risk organs prior to the development of cancer are called risk-reducing (or prophylactic) surgeries.
  • #36 Lynch syndrome – Diagnosis and treatment – Mayo Clinic
    https://www.mayoclinic.org/diseases-conditions/lynch-syndrome/diagnosis-treatment/drc-20374719
    Treatments may be available for: Endometrial cancer prevention. Surgery to remove the uterus is called hysterectomy. It prevents endometrial cancer. […] Ovarian cancer prevention. Surgery to remove the ovaries is called oophorectomy. It greatly reduces the risk of ovarian cancer. […] Colon cancer prevention. Surgery to remove most or all of your colon is called colectomy. It lowers your risk of colon cancer.
  • #37 Diagnosis and management of Lynch syndrome | Frontline Gastroenterology
    https://fg.bmj.com/content/13/e1/e80
    The decision regarding surgery should be a patient-centred, multidisciplinary approach, taking into account patient wishes, gene-specific risk, comorbidities and age. […] Implementation of high-quality family cancer service can improve appropriateness of colonoscopy, adenoma detection rate and tumour MMR testing.
  • #38 You’ve Been Diagnosed With Lynch Syndrome. Now What? | ACOG
    https://www.acog.org/womens-health/experts-and-stories/the-latest/youve-been-diagnosed-with-lynch-syndrome-now-what
    Ideally, you and your doctor should discuss removal of your ovaries and uterus by your mid-40s. Until then, we can reduce your risk for these cancers through lifestyle changes, hormonal medications, and other measures. […] If you are faced with these decisions, ask your ob-gyn for a referral to a fertility specialist who can help you explore your options. […] A hereditary cancer syndrome diagnosis can prompt other blood relatives to get genetic testing. We call this cascade testing. […] Lynch syndrome is something that happens to you, even if that thing isn’t cancer. You have a lifetime to live with it, and that’s part of what makes previvorship so hard, physically and emotionally. Beyond all the screenings, surgeries, and referrals, I hope to provide my patients with a safe space to deal with their diagnosis.
  • #39 Keys to identifying Lynch syndrome
    https://www.contemporaryobgyn.net/view/keys-identifying-lynch-syndrome
    Once a patient with Lynch syndrome has completed child-bearing, it is appropriate to counsel her to consider a prophylactic hysterectomy and bilateral salpingo-oophorectomy. […] Women with Lynch syndrome who have not completed child-bearing should be followed carefully with endometrial biopsies every 1 to 2 years, starting at age 30 to 35. […] It cannot be emphasized enough that taking a careful cancer family history is the most effective way for a clinician to evaluate a patient for risk of having Lynch syndrome. […] If a patient’s personal or family history is suggestive of Lynch Syndrome, diagnostic genetic testing should be considered to confirm the diagnosis. […] Ordering a hereditary cancer panel that will test for multiple cancer syndromes at one time is now the standard of care. […] Ob/gyns are well-positioned to identify women who may have Lynch syndrome by routinely obtaining a cancer family history from their patients. […] They can then discuss the importance of genetic testing with patients who may possibly meet the criteria for Lynch syndrome.
  • #40 Managing Lynch Syndrome | Lynch Syndrome Center
    https://lynchsyndromecenter.ucsf.edu/managing-lynch-syndrome
    Some people opt to undergo risk-reducing surgery in order to prevent cancer. […] A hysterectomy refers to surgical removal of the uterus. […] An oophorectomy is a surgical procedure to remove the ovaries, which reduces the risk of ovarian cancer. […] The best way to treat cancer is to prevent it from occurring in the first place. […] Because Lynch syndrome increases the risk of certain types of cancer, preventive strategies are of the utmost importance. […] Some research indicates that daily aspirin may be a viable preventive strategy for individuals with Lynch syndrome. […] The Cancer and Steroid Hormone Study (CASH) demonstrated that use of oral contraceptives can reduce the risk of endometrial cancer by 50%. […] While diet and exercise are not a remedy for disease, they do contribute to overall health. […] If you have Lynch syndrome and are planning to start or grow your family, there are options for preimplantation genetic diagnosis (PGD) assisted reproduction to reduce the risk of passing on this condition.
  • #41 Hereditary Nonpolyposis Colorectal Cancer (Lynch Syndrome) Treatment & Management: Surgical Care, Postoperative Surveillance, Prophylactic Colectomy
    https://emedicine.medscape.com/article/188613-treatment
    To help reduce the risk of endometrial and ovarian cancer, some experts recommend discussing prophylactic hysterectomy and bilateral salpingo-oophorectomy with women older than 50 years who have HNPCC. […] National Comprehensive Cancer Network guidelines recommend that such risk-reducing gynecologic surgery may be considered starting at age 40 years in women with MLH1 Lynch syndrome. […] Observational studies of persons at average risk have suggested that the use of some medications and supplements may prevent the development of colorectal cancer. […] The international CAPP2 trial of cancer prevention in HNPCC randomized 427 participants to receive aspirin and monitored cancer outcomes for at least 10 years in all participants. […] National Comprehensive Cancer Network (NCCN) guidelines recommend considering daily aspirin to reduce the risk of future colorectal cancer in all patients with HNPCC. […] As with cancers in the general population, risk of cancer in HNPCC can be reduced by attention to the following lifestyle factors: Smoking cessation, Weight loss, if overweight or obese, Physical activity.
  • #42
  • #43 Lynch Syndrome – What You Need to Know
    https://www.drugs.com/cg/lynch-syndrome.html
    Exercise as directed. Exercise can help lower your risk for cancer. Ask your healthcare provider how much exercise you need and which exercises are best for you. […] Take aspirin if directed. Aspirin can help reduce your risk for colorectal cancer. Talk to your healthcare provider before you start taking aspirin every day. Aspirin is a blood thinner and may cause severe bleeding if you are taking blood thinners. Your risk for stomach bleeding is also increased. Your healthcare provider will tell you how much aspirin to take and how often to take it.
  • #44 Managing Lynch Syndrome | Lynch Syndrome Center
    https://lynchsyndromecenter.ucsf.edu/managing-lynch-syndrome
    Some people opt to undergo risk-reducing surgery in order to prevent cancer. […] A hysterectomy refers to surgical removal of the uterus. […] An oophorectomy is a surgical procedure to remove the ovaries, which reduces the risk of ovarian cancer. […] The best way to treat cancer is to prevent it from occurring in the first place. […] Because Lynch syndrome increases the risk of certain types of cancer, preventive strategies are of the utmost importance. […] Some research indicates that daily aspirin may be a viable preventive strategy for individuals with Lynch syndrome. […] The Cancer and Steroid Hormone Study (CASH) demonstrated that use of oral contraceptives can reduce the risk of endometrial cancer by 50%. […] While diet and exercise are not a remedy for disease, they do contribute to overall health. […] If you have Lynch syndrome and are planning to start or grow your family, there are options for preimplantation genetic diagnosis (PGD) assisted reproduction to reduce the risk of passing on this condition.
  • #45 Lynch syndrome – Obstetrics and Gynecology | Northwell Health
    https://www.northwell.edu/obstetrics-and-gynecology/conditions/lynch-syndrome
    If you inherited Lynch syndrome, your specialist will develop an individualized treatment plan to reduce your chances of developing cancer. If you are already being treated for cancer, you will be counseled on what your condition means, how it will affect you and the best next steps. […] Women between the ages of 25 and 45 are typically offered chemoprevention. The most common form of chemoprevention, the birth control pill, has been shown to reduce the risk of ovarian cancer by 50 percent. In addition to chemoprevention, ultrasounds, colonoscopies, biopsies and other screening tests should be performed regularly to monitor for any developments. […] Our gynecologic and gastrointestinal oncologists are experts in robot-assisted and laparoscopic minimally invasive surgery, and are extremely experienced with these procedures. We also rigorously track outcomes to make sure we are offering the highest quality of care.
  • #46 Hereditary Nonpolyposis Colorectal Cancer (Lynch Syndrome) Treatment & Management: Surgical Care, Postoperative Surveillance, Prophylactic Colectomy
    https://emedicine.medscape.com/article/188613-treatment
    To help reduce the risk of endometrial and ovarian cancer, some experts recommend discussing prophylactic hysterectomy and bilateral salpingo-oophorectomy with women older than 50 years who have HNPCC. […] National Comprehensive Cancer Network guidelines recommend that such risk-reducing gynecologic surgery may be considered starting at age 40 years in women with MLH1 Lynch syndrome. […] Observational studies of persons at average risk have suggested that the use of some medications and supplements may prevent the development of colorectal cancer. […] The international CAPP2 trial of cancer prevention in HNPCC randomized 427 participants to receive aspirin and monitored cancer outcomes for at least 10 years in all participants. […] National Comprehensive Cancer Network (NCCN) guidelines recommend considering daily aspirin to reduce the risk of future colorectal cancer in all patients with HNPCC. […] As with cancers in the general population, risk of cancer in HNPCC can be reduced by attention to the following lifestyle factors: Smoking cessation, Weight loss, if overweight or obese, Physical activity.
  • #47 Lynch Syndrome – What You Need to Know
    https://www.drugs.com/cg/lynch-syndrome.html
    Tell family members about Lynch syndrome. They might need to be tested for cancer or for Lynch syndrome. A genetic counselor can talk to you about your risk for passing Lynch syndrome to your children. […] Do not smoke. Nicotine can damage blood vessels and make it more difficult to manage cancer. Smoking also increases your risk for new or returning cancer and delays healing after treatment. E-cigarettes or smokeless tobacco still contain nicotine. Ask your healthcare provider for information before you use these products. […] Eat a variety of healthy foods. Healthy foods include fruits, vegetables, low-fat dairy products, lean meats, fish, and legumes, such as cooked beans. Healthy foods can help reduce your risk for some types of cancer. Fruits and vegetables can be especially helpful in preventing colorectal cancer.
  • #48 Lynch Syndrome – What You Need to Know
    https://www.drugs.com/cg/lynch-syndrome.html
    Exercise as directed. Exercise can help lower your risk for cancer. Ask your healthcare provider how much exercise you need and which exercises are best for you. […] Take aspirin if directed. Aspirin can help reduce your risk for colorectal cancer. Talk to your healthcare provider before you start taking aspirin every day. Aspirin is a blood thinner and may cause severe bleeding if you are taking blood thinners. Your risk for stomach bleeding is also increased. Your healthcare provider will tell you how much aspirin to take and how often to take it.
  • #49 Opinion: For Those With Lynch Syndrome, Exercise May Be A Useful Defense Against Colorectal Cancer
    https://www.oncnursingnews.com/view/opinion-for-those-with-lynch-syndrome-exercise-may-be-a-useful-defense-against-colorectal-cancer
    A structured exercise program may aid in preventing colorectal cancer in patients with Lynch syndrome. […] Nurses can inform their patients that this research showcased an improvement in the cardiovascular fitness of patients with Lynch syndrome following a one-year cycling intervention, as evidenced by elevated VO2peak levels. Furthermore, there was a significant reduction in pro-inflammatory markers and an increase in cells that promote the activation of the immune system. These findings collectively suggest that exercise may play a role in cancer prevention by stimulating adaptive antitumor immunity. […] The findings of this study emphasize the need to educate and support patients with Lynch syndrome in adopting and maintaining a regular exercise regimen. Beyond the physical benefits, exercise can provide patients with a sense of control and empowerment over their health, fostering a proactive mindset in the face of a challenging diagnosis. It is my hope that this study inspires healthcare providers and patients to embrace the positive impact of exercise in their health journey.
  • #50 An Essential Guide to Lynch Syndrome for Patients & Families – Lynsight
    https://lynsightlabs.com/an-essential-guide-to-lynch-syndrome-for-patients-families/
    Lynch syndrome is a hereditary condition that increases the risk of many types of cancer. Facing a positive Lynch syndrome diagnosis is challenging – and sometimes confusing. Here’s what you need to know. […] One of the most critical steps after a positive Lynch syndrome diagnosis is to engage in genetic counseling. Genetic counselors are specialists who provide information about genetic conditions, helping you understand your risks and the implications for your family. They can guide you through genetic testing, interpret results and discuss preventive measures and screening options tailored to your specific situation. […] A positive Lynch syndrome diagnosis can have a significant emotional toll. The fear of potential cancers and the impact on your family’s future can be daunting. It’s important to acknowledge these feelings and find healthy ways to cope. Talking to a mental health professional can be incredibly beneficial in managing anxiety and stress.
  • #51 Understanding Lynch syndrome: implications for nursing – PubMed
    https://pubmed.ncbi.nlm.nih.gov/17623626/
    Colorectal cancer (CRC) is the second-leading cause of cancer-related death in the United States. Approximately 10% of CRC is hereditary, and hereditary nonpolyposis CRC (HNPCC), or Lynch syndrome I, is the most common form. […] Nursing care for patients with Lynch syndrome includes identifying patients who would benefit from genetic counseling, providing education, and assessing and meeting patient psychosocial needs.
  • #52 An Essential Guide to Lynch Syndrome for Patients & Families – Lynsight
    https://lynsightlabs.com/an-essential-guide-to-lynch-syndrome-for-patients-families/
    Lynch syndrome is a hereditary condition that increases the risk of many types of cancer. Facing a positive Lynch syndrome diagnosis is challenging – and sometimes confusing. Here’s what you need to know. […] One of the most critical steps after a positive Lynch syndrome diagnosis is to engage in genetic counseling. Genetic counselors are specialists who provide information about genetic conditions, helping you understand your risks and the implications for your family. They can guide you through genetic testing, interpret results and discuss preventive measures and screening options tailored to your specific situation. […] A positive Lynch syndrome diagnosis can have a significant emotional toll. The fear of potential cancers and the impact on your family’s future can be daunting. It’s important to acknowledge these feelings and find healthy ways to cope. Talking to a mental health professional can be incredibly beneficial in managing anxiety and stress.
  • #53 An Essential Guide to Lynch Syndrome for Patients & Families – Lynsight
    https://lynsightlabs.com/an-essential-guide-to-lynch-syndrome-for-patients-families/
    Navigating Lynch syndrome often requires more than just medical care – it involves emotional and practical support as well. […] Building a support network is crucial. This network might include family members, friends, healthcare professionals and support groups. Each plays a unique role in providing emotional reassurance and a sense of normalcy. […] Lynch syndrome is hereditary, which means it can be passed down to future generations. Informing family members about a positive diagnosis is an important step. […] Advocacy can be a powerful tool in managing Lynch syndrome. By advocating for yourself and others, you can help raise awareness about the condition, support research efforts and improve access to resources and treatments. […] The field of genetic research and cancer treatment is continually evolving. Staying informed about medical advancements and new testing options can help you make educated decisions about your health care and treatment options.
  • #54 My advice for coping with Lynch Syndrome | MD Anderson Cancer Center
    https://www.mdanderson.org/cancerwise/my-advice-for-coping-with-lynch-syndrome.h00-159222567.html
    Follow the screening recommendations […] For people with Lynch Syndrome, cancer screenings should begin in the early 20s. […] I undergo all of my exams at MD Anderson, and they usually set up my appointments back-to-back to make it less complicated. […] Stay vigilant […] I am very aware of the signs of ovarian, colorectal, and uterine cancers all of which are cancers that run in my family. […] Enforce healthy lifestyle habits […] Your weight, diet and physical activity can make a big impact on your cancer risk. […] Find support […] My maternal aunt and cousin also have Lynch Syndrome, so we help each other stay on top of our screenings. […] Help others […] If you’ve just been diagnosed with Lynch Syndrome, reach out to other family members who may also have this genetic mutation. […] It’s crucial for us to help educate others about Lynch Syndrome. […] You can thrive despite Lynch Syndrome […] In fact, I learned a new term through all of this: previvor. This is a term for someone who has a genetic predisposition or genetic mutation who has not developed cancer.
  • #55 An Essential Guide to Lynch Syndrome for Patients & Families – Lynsight
    https://lynsightlabs.com/an-essential-guide-to-lynch-syndrome-for-patients-families/
    Navigating Lynch syndrome often requires more than just medical care – it involves emotional and practical support as well. […] Building a support network is crucial. This network might include family members, friends, healthcare professionals and support groups. Each plays a unique role in providing emotional reassurance and a sense of normalcy. […] Lynch syndrome is hereditary, which means it can be passed down to future generations. Informing family members about a positive diagnosis is an important step. […] Advocacy can be a powerful tool in managing Lynch syndrome. By advocating for yourself and others, you can help raise awareness about the condition, support research efforts and improve access to resources and treatments. […] The field of genetic research and cancer treatment is continually evolving. Staying informed about medical advancements and new testing options can help you make educated decisions about your health care and treatment options.
  • #56 Lynch Syndrome: Signs/Symptoms, Causes, Outlook
    https://my.clevelandclinic.org/health/diseases/17195-lynch-syndrome-and-hnpcc
    Lynch syndrome is a genetic condition that can lead to cancer. People with Lynch syndrome often get cancer before age 50 and should undergo lifelong cancer screenings to detect and treat cancer early. […] Individuals diagnosed with Lynch syndrome should tell their family members and encourage them to seek genetic counseling. Genetic counseling helps you and your family understand the risks of having a child with a genetic condition. Counseling includes an evaluation of their personal and family history as well as and genetic testing for the Lynch syndrome gene mutation. […] Treatment for Lynch syndrome focuses on detecting cancer and surgically removing it from your body. […] Its highly recommended that you receive expert care for your diagnosis. Because Lynch syndrome can affect many organ systems, the care team will include a variety of clinicians. Team members may include gastroenterologists, surgeons, gynecologic oncologists, urologists, dermatologists, gynecologists, primary care physicians, geneticists, genetic counselors and oncologists. […] If you have Lynch syndrome, its important that you visit your healthcare provider for annual checkups and work with your provider to schedule regular screening tests to detect cancer early.
  • #57
    https://www.aboutgeneticcounselors.com/Resources-to-Help-You/Post/lynch-syndrome-a-common-yet-under-recognized-hereditary-cancer-predisposition
    Lynch syndrome is the most common inherited predisposition to colorectal and endometrial (uterine) cancers, yet is it under-diagnosed. […] Identifying patients with Lynch syndrome also helps with testing other members of their family who may be at risk and helps ensure access to care for patients who have high risks for cancer. […] If one of your relatives reaches out with these questions, please take the time to share this information, as it may help to protect the health of your entire family. […] A key benefit of determining if an individual has Lynch syndrome is helping their family members learn if theyve also inherited this condition. […] This process is called cascade testing. Genetic counselors can assist family members in pursuing testing for the known mutation in the family.
  • #58 Diagnosis and management of Lynch syndrome | Frontline Gastroenterology
    https://fg.bmj.com/content/13/e1/e80
    Lynch syndrome (LS) requires lifelong coordinated multidisciplinary care, where the application of interventions provides many opportunities to reduce cancer risk. […] Patients diagnosed with LS require lifelong coordinated multidisciplinary care, where the application of interventions provides many opportunities to reduce cancer risk. […] Colonoscopic surveillance should be performed every 2 years starting at age 25 years for MLH1, or MSH2 pathogenic variant carriers, or age 35 years for MSH6, or PMS2 pathogenic variant carriers. […] Women should be counselled on prophylactic hysterectomy and bilateral salpingo-oopherectomy from age 40 years (MLH1, MSH2 and MSH6 variant carriers). […] Chemoprophylaxis with daily aspirin for at least 2 years is recommended in patients 70 years old diagnosed with LS to reduce long-term CRC risk.
  • #59 Lynch Syndrome | Symptoms & Treatment | MedStar Health
    https://www.medstarhealth.org/services/lynch-syndrome
    Lynch syndrome is a genetic condition that increases the risk of developing various cancers, often earlier in life. […] Because Lynch syndrome is often undiagnosed, understanding the risk factors and your own family history of cancer can help you to know when to seek genetic counseling, testing, and specialized care. […] Thats why its important to seek care from Lynch syndrome specialists who can help manage and monitor your health. […] At MedStar Health, we offer comprehensive services for patients with Lynch syndrome, ensuring they and their families have access to the most up-to-date information on the condition. […] Through our high-risk clinics, our specialists provide personalized, life-saving screening recommendations aimed to aid in early detection and cancer prevention. […] If you are diagnosed with Lynch syndrome or are concerned about your risk, our specialists offer comprehensive, personalized care through our GI Cancer Prevention Program in Washington, D.C., and our High-Risk Cancer Program in Baltimore.
  • #60 Lynch Syndrome | Symptoms & Treatment | MedStar Health
    https://www.medstarhealth.org/services/lynch-syndrome
    There, we can help you understand your diagnosis, coordinate yearly follow-up to monitor your health and lower your cancer risks, and discuss the impact for any at-risk family members. […] At MedStar Health, our dedicated genetic counselors and GI cancer specialists provide specialized care for patients and families at-risk of or diagnosed with Lynch syndrome. […] Our high-risk programs ensure patients receive personalized surveillance and prevention plans that take into account their family history, personal history of cancer, genetic mutation type, and personal preferences. […] Through yearly visits to our clinics, patients can stay up-to-date on screening recommendations, review changes in personal or family history, discuss lifestyle interventions, and explore next steps for family members, all within one network of providers. […] When appropriate, we also work closely with a multidisciplinary team of cancer experts, including surgeons, oncologists, and other specialists to best manage your health.
  • #61 Lynch Syndrome | Symptoms & Treatment | MedStar Health
    https://www.medstarhealth.org/services/lynch-syndrome
    There, we can help you understand your diagnosis, coordinate yearly follow-up to monitor your health and lower your cancer risks, and discuss the impact for any at-risk family members. […] At MedStar Health, our dedicated genetic counselors and GI cancer specialists provide specialized care for patients and families at-risk of or diagnosed with Lynch syndrome. […] Our high-risk programs ensure patients receive personalized surveillance and prevention plans that take into account their family history, personal history of cancer, genetic mutation type, and personal preferences. […] Through yearly visits to our clinics, patients can stay up-to-date on screening recommendations, review changes in personal or family history, discuss lifestyle interventions, and explore next steps for family members, all within one network of providers. […] When appropriate, we also work closely with a multidisciplinary team of cancer experts, including surgeons, oncologists, and other specialists to best manage your health.
  • #62 An Essential Guide to Lynch Syndrome for Patients & Families – Lynsight
    https://lynsightlabs.com/an-essential-guide-to-lynch-syndrome-for-patients-families/
    Navigating Lynch syndrome often requires more than just medical care – it involves emotional and practical support as well. […] Building a support network is crucial. This network might include family members, friends, healthcare professionals and support groups. Each plays a unique role in providing emotional reassurance and a sense of normalcy. […] Lynch syndrome is hereditary, which means it can be passed down to future generations. Informing family members about a positive diagnosis is an important step. […] Advocacy can be a powerful tool in managing Lynch syndrome. By advocating for yourself and others, you can help raise awareness about the condition, support research efforts and improve access to resources and treatments. […] The field of genetic research and cancer treatment is continually evolving. Staying informed about medical advancements and new testing options can help you make educated decisions about your health care and treatment options.
  • #63 Recommended care and care adherence following a diagnosis of Lynch syndrome: a mixed-methods study | Hereditary Cancer in Clinical Practice | Full Text
    https://hccpjournal.biomedcentral.com/articles/10.1186/s13053-019-0130-8
    The types and frequency of other surveillance recommendations documented for patients with LS were variable. […] Adherence to recommended care by patients who received surveillance recommendations ranged from 19.9% (SD=31.3%, transvaginal ultrasound; TVUS) to 81.5% (SD=32.7%; colonoscopy). […] In addition to surveillance recommendations, 73% of patients received a recommendation to contact medical genetics for any changes to their LS-related surveillance and care recommendations, as guidelines can change over time. […] Both patients and providers offered actionable suggestions that could address the observed variability in recommendations and the lack of care updates. […] The care gaps we identified highlight the need for easy-to-implement improvements to care coordination and standardization for this population.
  • #64 Recommended care and care adherence following a diagnosis of Lynch syndrome: a mixed-methods study | Hereditary Cancer in Clinical Practice | Full Text
    https://hccpjournal.biomedcentral.com/articles/10.1186/s13053-019-0130-8
    Lynch syndrome (LS) is the most common hereditary colorectal cancer (CRC) syndrome. This study assesses trends in diagnosis of LS and adherence to recommended LS-related care in a large integrated healthcare organization (~575,000 members). […] We identified 74 patients with a diagnosis of LS; 64% were diagnosed with a LS-related malignancy prior to their diagnosis of LS. […] Colonoscopy recommendations were documented in the EMR for almost all patients with LS (96%). Documentation of other recommendations for cancer surveillance was less commonly found. Overall, patient adherence to colonoscopy was high (M=81.5%; SD=32.7%), and adherence to other recommendations varied. […] However, patients with LS were likely to receive and follow CRC surveillance recommendations. Recommendations for and adherence to extracolonic surveillance were variable. Improved care coordination and clearer documentation of the LS diagnosis is needed.
  • #65 Recommended care and care adherence following a diagnosis of Lynch syndrome: a mixed-methods study | Hereditary Cancer in Clinical Practice | Full Text
    https://hccpjournal.biomedcentral.com/articles/10.1186/s13053-019-0130-8
    The types and frequency of other surveillance recommendations documented for patients with LS were variable. […] Adherence to recommended care by patients who received surveillance recommendations ranged from 19.9% (SD=31.3%, transvaginal ultrasound; TVUS) to 81.5% (SD=32.7%; colonoscopy). […] In addition to surveillance recommendations, 73% of patients received a recommendation to contact medical genetics for any changes to their LS-related surveillance and care recommendations, as guidelines can change over time. […] Both patients and providers offered actionable suggestions that could address the observed variability in recommendations and the lack of care updates. […] The care gaps we identified highlight the need for easy-to-implement improvements to care coordination and standardization for this population.
  • #66 Recommended care and care adherence following a diagnosis of Lynch syndrome: a mixed-methods study | Hereditary Cancer in Clinical Practice | Full Text
    https://hccpjournal.biomedcentral.com/articles/10.1186/s13053-019-0130-8
    The types and frequency of other surveillance recommendations documented for patients with LS were variable. […] Adherence to recommended care by patients who received surveillance recommendations ranged from 19.9% (SD=31.3%, transvaginal ultrasound; TVUS) to 81.5% (SD=32.7%; colonoscopy). […] In addition to surveillance recommendations, 73% of patients received a recommendation to contact medical genetics for any changes to their LS-related surveillance and care recommendations, as guidelines can change over time. […] Both patients and providers offered actionable suggestions that could address the observed variability in recommendations and the lack of care updates. […] The care gaps we identified highlight the need for easy-to-implement improvements to care coordination and standardization for this population.
  • #67 Understanding Lynch syndrome: implications for nursing – PubMed
    https://pubmed.ncbi.nlm.nih.gov/17623626/
    Colorectal cancer (CRC) is the second-leading cause of cancer-related death in the United States. Approximately 10% of CRC is hereditary, and hereditary nonpolyposis CRC (HNPCC), or Lynch syndrome I, is the most common form. […] Nursing care for patients with Lynch syndrome includes identifying patients who would benefit from genetic counseling, providing education, and assessing and meeting patient psychosocial needs.
  • #68 Opinion: For Those With Lynch Syndrome, Exercise May Be A Useful Defense Against Colorectal Cancer
    https://www.oncnursingnews.com/view/opinion-for-those-with-lynch-syndrome-exercise-may-be-a-useful-defense-against-colorectal-cancer
    A structured exercise program may aid in preventing colorectal cancer in patients with Lynch syndrome. […] Nurses can inform their patients that this research showcased an improvement in the cardiovascular fitness of patients with Lynch syndrome following a one-year cycling intervention, as evidenced by elevated VO2peak levels. Furthermore, there was a significant reduction in pro-inflammatory markers and an increase in cells that promote the activation of the immune system. These findings collectively suggest that exercise may play a role in cancer prevention by stimulating adaptive antitumor immunity. […] The findings of this study emphasize the need to educate and support patients with Lynch syndrome in adopting and maintaining a regular exercise regimen. Beyond the physical benefits, exercise can provide patients with a sense of control and empowerment over their health, fostering a proactive mindset in the face of a challenging diagnosis. It is my hope that this study inspires healthcare providers and patients to embrace the positive impact of exercise in their health journey.
  • #69 Opinion: For Those With Lynch Syndrome, Exercise May Be A Useful Defense Against Colorectal Cancer
    https://www.oncnursingnews.com/view/opinion-for-those-with-lynch-syndrome-exercise-may-be-a-useful-defense-against-colorectal-cancer
    A structured exercise program may aid in preventing colorectal cancer in patients with Lynch syndrome. […] Nurses can inform their patients that this research showcased an improvement in the cardiovascular fitness of patients with Lynch syndrome following a one-year cycling intervention, as evidenced by elevated VO2peak levels. Furthermore, there was a significant reduction in pro-inflammatory markers and an increase in cells that promote the activation of the immune system. These findings collectively suggest that exercise may play a role in cancer prevention by stimulating adaptive antitumor immunity. […] The findings of this study emphasize the need to educate and support patients with Lynch syndrome in adopting and maintaining a regular exercise regimen. Beyond the physical benefits, exercise can provide patients with a sense of control and empowerment over their health, fostering a proactive mindset in the face of a challenging diagnosis. It is my hope that this study inspires healthcare providers and patients to embrace the positive impact of exercise in their health journey.
  • #70 Lynch Syndrome Center | Dana-Farber Cancer Institute
    https://www.dana-farber.org/cancer-care/treatment/cancer-genetics/syndromes-genes-programs/lynch-syndrome
    Matthew Yurgelun, MD, a gastrointestinal medical oncologist and Director of the Lynch Syndrome Center at Dana-Farber Cancer Institute describes how the Center provides coordination of care and individual care plans for Lynch syndrome patients through a team of dedicated physicians, nurse practitioners, genetic counselors and other Lynch syndrome specialists. […] Our scheduling staff and Lynch syndrome nursing experts can help coordinate your multidisciplinary referrals and follow-up appointments, based on your personalized management plan.
  • #71 Lynch Syndrome Center | Dana-Farber Cancer Institute
    https://www.dana-farber.org/cancer-care/treatment/cancer-genetics/syndromes-genes-programs/lynch-syndrome
    Matthew Yurgelun, MD, a gastrointestinal medical oncologist and Director of the Lynch Syndrome Center at Dana-Farber Cancer Institute describes how the Center provides coordination of care and individual care plans for Lynch syndrome patients through a team of dedicated physicians, nurse practitioners, genetic counselors and other Lynch syndrome specialists. […] Our scheduling staff and Lynch syndrome nursing experts can help coordinate your multidisciplinary referrals and follow-up appointments, based on your personalized management plan.
  • #72 Lynch syndrome: Identifying patients at risk for HNPCC – Oncology Nurse Advisor
    https://www.oncologynurseadvisor.com/features/lynch-syndrome-identifying-patients-at-risk-for-hnpcc/
    Identifying families at risk improves screening and counseling of patients at risk for hereditary nonpolyposis colorectal cancer. […] Oncology nurses are essential in this step as they often have a close, ongoing relationship with their patients. […] This article provides a review of the current knowledge about Lynch syndrome, an overview of high-risk patient management, and strategies for identifying patients who are candidates for genetic evaluation. […] Assessment for Lynch syndrome begins with a thorough family cancer history that includes at least three generations of both maternal and paternal first-, second-, and third-degree relatives. […] Patients who meet the revised Bethesda criteria should be referred for further genetic evaluation, especially those patients with a personal history of colorectal cancer at younger than 50 years or who have had another Lynch syndrome-related cancer such as endometrial, ovarian, stomach, urinary tract, or pancreatic cancer. […] When in doubt, or if the patient expresses a concern for hereditary cancer, refer the patient for genetic counseling.
  • #73 An Essential Guide to Lynch Syndrome for Patients & Families – Lynsight
    https://lynsightlabs.com/an-essential-guide-to-lynch-syndrome-for-patients-families/
    Navigating Lynch syndrome often requires more than just medical care – it involves emotional and practical support as well. […] Building a support network is crucial. This network might include family members, friends, healthcare professionals and support groups. Each plays a unique role in providing emotional reassurance and a sense of normalcy. […] Lynch syndrome is hereditary, which means it can be passed down to future generations. Informing family members about a positive diagnosis is an important step. […] Advocacy can be a powerful tool in managing Lynch syndrome. By advocating for yourself and others, you can help raise awareness about the condition, support research efforts and improve access to resources and treatments. […] The field of genetic research and cancer treatment is continually evolving. Staying informed about medical advancements and new testing options can help you make educated decisions about your health care and treatment options.
  • #74 Identifying and Managing Lynch Syndrome (CNE)
    https://education.clinical.jax.org/identifying-and-managing-lynch-syndrome-cne
    Lynch syndrome is a hereditary cancer syndrome associated with significantly increased risk for colorectal, endometrial, and many other cancer types. When diagnosed, increased screening and surveillance can lead to early cancer diagnoses and even prevention, decreasing morbidity and mortality. […] This activity is designed to meet the educational needs of practicing nurses and advanced practice nurses. […] Identify and manage individuals at increased risk of cancer due to familial factors and hereditary cancer syndromes. […] Nurses are eligible for a maximum of .25 contact hours upon the completion of this activity.
  • #75 Identifying and Managing Lynch Syndrome (CNE)
    https://education.clinical.jax.org/identifying-and-managing-lynch-syndrome-cne
    Lynch syndrome is a hereditary cancer syndrome associated with significantly increased risk for colorectal, endometrial, and many other cancer types. When diagnosed, increased screening and surveillance can lead to early cancer diagnoses and even prevention, decreasing morbidity and mortality. […] This activity is designed to meet the educational needs of practicing nurses and advanced practice nurses. […] Identify and manage individuals at increased risk of cancer due to familial factors and hereditary cancer syndromes. […] Nurses are eligible for a maximum of .25 contact hours upon the completion of this activity.
  • #76 Lynch Syndrome Center | Dana-Farber Cancer Institute
    https://www.dana-farber.org/cancer-care/treatment/cancer-genetics/syndromes-genes-programs/lynch-syndrome
    Lynch syndrome is a common and often under-diagnosed inherited condition that increases one’s risk for a variety of cancers, including colon, rectal, uterine, ovarian, urinary tract, and other malignancies. Dana-Farber Cancer Institute’s Lynch Syndrome Center is the largest and most comprehensive multidisciplinary cancer genetics group in the region that specializes in coordinating the care of people with Lynch syndrome. […] The Center’s mission is to provide personalized and comprehensive care for families with Lynch syndrome, supported by world-class research and state-of-the-art diagnostics. As part of Dana-Farber’s Center for Cancer Genetics and Prevention, our specialists help manage the comprehensive care of individuals and families with Lynch syndrome by providing genetic testing for individuals at risk for Lynch syndrome, creating personalized screening plans aimed at preventing Lynch syndrome-related cancers, and coordinating care with experts in surgery, gastroenterology, dermatology, and oncology.
  • #77 Lynch Syndrome Screening and Treatment Program | Massachusetts General Hospital
    https://www.massgeneral.org/cancer-center/treatments-and-services/cancer-genetics/lynch-syndrome
    The Lynch Syndrome Screening and Treatment Program provides expert and lifelong care for individuals and families affected by Lynch syndrome. […] The Lynch Syndrome Screening and Treatment Program at Mass General Cancer Center gives complete, personalized, and lifelong care for patients and families with Lynch syndrome. […] The Lynch Syndrome Screening and Treatment Program provides expert and lifelong care for individuals and families affected by Lynch syndrome and makes sure they get the best possible medical management and support. […] We are here to help you understand Lynch syndrome better and offer appropriate treatment and screening options. […] People with Lynch syndrome can significantly decrease their risk of developing cancer with careful medical follow-ups, which are available at the Lynch Syndrome Screening and Treatment Program at Mass General Cancer Center.
  • #78 Lynch Syndrome Center | Dana-Farber Cancer Institute
    https://www.dana-farber.org/cancer-care/treatment/cancer-genetics/syndromes-genes-programs/lynch-syndrome
    Lynch syndrome is a common and often under-diagnosed inherited condition that increases one’s risk for a variety of cancers, including colon, rectal, uterine, ovarian, urinary tract, and other malignancies. Dana-Farber Cancer Institute’s Lynch Syndrome Center is the largest and most comprehensive multidisciplinary cancer genetics group in the region that specializes in coordinating the care of people with Lynch syndrome. […] The Center’s mission is to provide personalized and comprehensive care for families with Lynch syndrome, supported by world-class research and state-of-the-art diagnostics. As part of Dana-Farber’s Center for Cancer Genetics and Prevention, our specialists help manage the comprehensive care of individuals and families with Lynch syndrome by providing genetic testing for individuals at risk for Lynch syndrome, creating personalized screening plans aimed at preventing Lynch syndrome-related cancers, and coordinating care with experts in surgery, gastroenterology, dermatology, and oncology.
  • #79 Lynch Syndrome Screening and Treatment Program | Massachusetts General Hospital
    https://www.massgeneral.org/cancer-center/treatments-and-services/cancer-genetics/lynch-syndrome
    The Lynch Syndrome Screening and Treatment Program provides expert and lifelong care for individuals and families affected by Lynch syndrome. […] The Lynch Syndrome Screening and Treatment Program at Mass General Cancer Center gives complete, personalized, and lifelong care for patients and families with Lynch syndrome. […] The Lynch Syndrome Screening and Treatment Program provides expert and lifelong care for individuals and families affected by Lynch syndrome and makes sure they get the best possible medical management and support. […] We are here to help you understand Lynch syndrome better and offer appropriate treatment and screening options. […] People with Lynch syndrome can significantly decrease their risk of developing cancer with careful medical follow-ups, which are available at the Lynch Syndrome Screening and Treatment Program at Mass General Cancer Center.
  • #80 About Us | Lynch Syndrome Center
    https://lynchsyndromecenter.ucsf.edu/
    At the UCSF Lynch Syndrome Center, we are committed to providing comprehensive multidisciplinary care, support, and education for individuals and families affected by Lynch syndrome. […] We take a holistic approach to Lynch syndrome care, addressing not only medical needs but also offering emotional and educational support. We offer patient-centered care, and we work closely with you to create a care plan that aligns with your unique needs and preferences.
  • #81 Lynch Syndrome Center | Dana-Farber Cancer Institute
    https://www.dana-farber.org/cancer-care/treatment/cancer-genetics/syndromes-genes-programs/lynch-syndrome
    Matthew Yurgelun, MD, a gastrointestinal medical oncologist and Director of the Lynch Syndrome Center at Dana-Farber Cancer Institute describes how the Center provides coordination of care and individual care plans for Lynch syndrome patients through a team of dedicated physicians, nurse practitioners, genetic counselors and other Lynch syndrome specialists. […] Our scheduling staff and Lynch syndrome nursing experts can help coordinate your multidisciplinary referrals and follow-up appointments, based on your personalized management plan.
  • #82 Lynch Syndrome | Symptoms & Treatment | MedStar Health
    https://www.medstarhealth.org/services/lynch-syndrome
    Lynch syndrome is a genetic condition that increases the risk of developing various cancers, often earlier in life. […] Because Lynch syndrome is often undiagnosed, understanding the risk factors and your own family history of cancer can help you to know when to seek genetic counseling, testing, and specialized care. […] Thats why its important to seek care from Lynch syndrome specialists who can help manage and monitor your health. […] At MedStar Health, we offer comprehensive services for patients with Lynch syndrome, ensuring they and their families have access to the most up-to-date information on the condition. […] Through our high-risk clinics, our specialists provide personalized, life-saving screening recommendations aimed to aid in early detection and cancer prevention. […] If you are diagnosed with Lynch syndrome or are concerned about your risk, our specialists offer comprehensive, personalized care through our GI Cancer Prevention Program in Washington, D.C., and our High-Risk Cancer Program in Baltimore.
  • #83 Lynch Syndrome | The University of Kansas Cancer Center | Kansas City
    https://www.kucancercenter.org/outreach/prevention/genetic-counseling-testing/lynch-syndrome
    However, we recommend screening earlier and more often for those who have Lynch syndrome, or for those who are younger than 45 but have a family history of colorectal cancer. […] Regular screenings and management can also decrease your risks for uterine (endometrial), stomach, ovarian and urinary tract cancers. […] Speak with a certified genetic counselor regarding your individual recommended screening guidelines for Lynch syndrome. […] We offer a specialized gastroenterology oncology clinic, gynecologic oncology clinic and a high-risk gastrointestinal clinic for patients with Lynch syndrome or other gastrointestinal conditions. […] These clinics focus on primary prevention methods like colonoscopy or gynecology screening, formulating surveillance plans and referrals for surgical intervention, if needed.
  • #84 Lynch Syndrome | The University of Kansas Cancer Center | Kansas City
    https://www.kucancercenter.org/outreach/prevention/genetic-counseling-testing/lynch-syndrome
    However, we recommend screening earlier and more often for those who have Lynch syndrome, or for those who are younger than 45 but have a family history of colorectal cancer. […] Regular screenings and management can also decrease your risks for uterine (endometrial), stomach, ovarian and urinary tract cancers. […] Speak with a certified genetic counselor regarding your individual recommended screening guidelines for Lynch syndrome. […] We offer a specialized gastroenterology oncology clinic, gynecologic oncology clinic and a high-risk gastrointestinal clinic for patients with Lynch syndrome or other gastrointestinal conditions. […] These clinics focus on primary prevention methods like colonoscopy or gynecology screening, formulating surveillance plans and referrals for surgical intervention, if needed.
  • #85 Hereditary Non-polyposis Colorectal Cancer (HNPCC): Overview & Causes | Nationwide Children’s Hospital
    https://www.nationwidechildrens.org/conditions/hereditary-nonpolyposis-colorectal-cancer-hnpcc
    Careful follow-up, including examination of the large intestine or colon (colonoscopy), have been shown to reduce the risk of this disease. […] Our Hereditary Polyposis Clinic expertly cares for children with this condition.
  • #86 Lynch Syndrome | Symptoms & Treatment | MedStar Health
    https://www.medstarhealth.org/services/lynch-syndrome
    There, we can help you understand your diagnosis, coordinate yearly follow-up to monitor your health and lower your cancer risks, and discuss the impact for any at-risk family members. […] At MedStar Health, our dedicated genetic counselors and GI cancer specialists provide specialized care for patients and families at-risk of or diagnosed with Lynch syndrome. […] Our high-risk programs ensure patients receive personalized surveillance and prevention plans that take into account their family history, personal history of cancer, genetic mutation type, and personal preferences. […] Through yearly visits to our clinics, patients can stay up-to-date on screening recommendations, review changes in personal or family history, discuss lifestyle interventions, and explore next steps for family members, all within one network of providers. […] When appropriate, we also work closely with a multidisciplinary team of cancer experts, including surgeons, oncologists, and other specialists to best manage your health.
  • #87 Lynch syndrome – Care at Mayo Clinic – Mayo Clinic
    https://www.mayoclinic.org/diseases-conditions/lynch-syndrome/care-at-mayo-clinic/mac-20374725
    Mayo Clinic doctors and other healthcare professionals work in teams to provide personalized care for people with Lynch syndrome. […] At Mayo Clinic, your care team has extensive experience caring for people with Lynch syndrome and other familial cancer syndromes. Your care team is prepared with the knowledge and resources to provide you with exactly the care you need. […] Should you require cancer treatment, Mayo Clinic offers the latest advances in cancer treatment. Your care team works with you to review all of your treatment options and choose the treatment that best suits your needs and goals.
  • #88 Lynch syndrome – Care at Mayo Clinic – Mayo Clinic
    https://www.mayoclinic.org/diseases-conditions/lynch-syndrome/care-at-mayo-clinic/mac-20374725
    Mayo Clinic doctors and other healthcare professionals work in teams to provide personalized care for people with Lynch syndrome. […] At Mayo Clinic, your care team has extensive experience caring for people with Lynch syndrome and other familial cancer syndromes. Your care team is prepared with the knowledge and resources to provide you with exactly the care you need. […] Should you require cancer treatment, Mayo Clinic offers the latest advances in cancer treatment. Your care team works with you to review all of your treatment options and choose the treatment that best suits your needs and goals.
  • #89 Lynch Syndrome: Managing the Risk of Hereditary Colon Cancer | Kaiser Permanente
    https://about.kaiserpermanente.org/health-and-wellness/our-care/lynch-syndrome-an-inheritance-she-never-wanted
    Lynch syndrome is a gene mutation that increases colon cancer risk. Learn how Kaiser Permanente helped Karen Betzler manage her risk through coordinated care. […] But the bad news came with a silver lining. Betzler was referred to Kellogg for genetic counseling. She also began receiving annual colonoscopies to check her colon and rectum for any signs of cancer. She receives an endoscopy every 2 years to check for cancer in her stomach and esophagus. […] Women with Lynch syndrome may also need regular screenings for reproductive cancers. Betzler does not because she has had a hysterectomy. […] Kellogg credits Kaiser Permanentes team approach with ensuring the best care for patients like Betzler. Multidisciplinary review boards of cancer specialists meet regularly to discuss complex cases. […] If you think you may have an inherited predisposition for cancer, be sure to tell your doctor. […] Having that information allows you to be more proactive, said Kellogg. You can take concrete steps to manage your risk.
  • #90 Lynch Syndrome: Reducing the Risk of Cancer with Genetic Precision – Advances for Medical Professionals | NewYork-Presbyterian
    https://www.nyp.org/publications/professional-advances/gastro/lynch-syndrome-reducing-the-risk-of-cancer
    Specialists in the GI clinical cancer genetics programs at NewYork-Presbyterian Hospital are pursuing research to develop the optimal screening strategy for Lynch syndrome in order to define the appropriate management from surveillance to annual colonoscopies based on an individuals particular genetic risk and on the particular gene that is altered. […] Lynch syndrome is the most common hereditary gastrointestinal cancer syndrome, affecting more than one million Americans. […] Although studies have shown that even though Lynch syndrome is the most common colon cancer predisposition syndrome, some 65 to 85 percent of community hospital cancer programs do not screen for this syndrome and only 1 in 4 individuals who met criteria were screened in the Cancer Research Network. […] And while early, regular and vigilant cancer screenings can save lives, less than 5 percent of people with the syndrome know they have it.
  • #91 Lynch Syndrome: Reducing the Risk of Cancer with Genetic Precision – Advances for Medical Professionals | NewYork-Presbyterian
    https://www.nyp.org/publications/professional-advances/gastro/lynch-syndrome-reducing-the-risk-of-cancer
    Specialists in the GI clinical cancer genetics programs at NewYork-Presbyterian Hospital are pursuing research to develop the optimal screening strategy for Lynch syndrome in order to define the appropriate management from surveillance to annual colonoscopies based on an individuals particular genetic risk and on the particular gene that is altered. […] Lynch syndrome is the most common hereditary gastrointestinal cancer syndrome, affecting more than one million Americans. […] Although studies have shown that even though Lynch syndrome is the most common colon cancer predisposition syndrome, some 65 to 85 percent of community hospital cancer programs do not screen for this syndrome and only 1 in 4 individuals who met criteria were screened in the Cancer Research Network. […] And while early, regular and vigilant cancer screenings can save lives, less than 5 percent of people with the syndrome know they have it.
  • #92 Lynch Syndrome: Reducing the Risk of Cancer with Genetic Precision – Advances for Medical Professionals | NewYork-Presbyterian
    https://www.nyp.org/publications/professional-advances/gastro/lynch-syndrome-reducing-the-risk-of-cancer
    Specialists in the GI clinical cancer genetics programs at NewYork-Presbyterian Hospital are pursuing research to develop the optimal screening strategy for Lynch syndrome in order to define the appropriate management from surveillance to annual colonoscopies based on an individuals particular genetic risk and on the particular gene that is altered. […] Lynch syndrome is the most common hereditary gastrointestinal cancer syndrome, affecting more than one million Americans. […] Although studies have shown that even though Lynch syndrome is the most common colon cancer predisposition syndrome, some 65 to 85 percent of community hospital cancer programs do not screen for this syndrome and only 1 in 4 individuals who met criteria were screened in the Cancer Research Network. […] And while early, regular and vigilant cancer screenings can save lives, less than 5 percent of people with the syndrome know they have it.
  • #93
    https://www.aboutgeneticcounselors.com/Resources-to-Help-You/Post/lynch-syndrome-a-common-yet-under-recognized-hereditary-cancer-predisposition
    Individuals with microsatellite unstable tumors (and/or tumors that are not expressing any of the Lynch syndrome proteins) are more likely to respond to treatment with immunotherapy. […] A genetic counselor can help ensure the correct genetic test(s) are performed, interpret the test results, and help patients understand how to use the information in surveillance, risk reduction, and treatment decisions. […] Lynch syndrome cancer surveillance includes earlier and more frequent colonoscopy. Many women with Lynch syndrome consider risk-reducing hysterectomy with removal of their ovaries and fallopian tubes. […] Work has been ongoing to learn how to reduce cancer risks and perhaps prevent cancers in individuals with Lynch syndrome. […] If health care providers and community members alike become more aware of Lynch syndrome, we can move from identifying individuals with Lynch syndrome after their cancer diagnosis to identifying healthy individuals who could take steps to help protect their health so they may never develop cancer at all.
  • #94 Primary care: the ‘linchpin’ in Lynch syndrome | British Journal of General Practice
    https://bjgp.org/content/75/754/198
    Primary care is often the first point of contact for patients after diagnosis and for ongoing care. A key role of GPs includes assessing patients suitability for, and prescribing of, daily aspirin for colorectal cancer prevention, as recommended by National Institute for Health and Care Excellence (NICE) for those with Lynch syndrome. […] A persistent challenge reported by people with Lynch syndrome is a lack of consistent and coordinated health care to help support them to manage their condition generally, and in the specific context of chemopreventive aspirin. […] Improved communication from secondary and tertiary care is needed to enable consistent coding of Lynch syndrome on patient health records and for primary care to fulfil its role as the linchpin of comprehensive care. However, for the small number of patients with Lynch syndrome in general practices, identifying these patients and offering chemoprevention has the potential to greatly reduce the incidence of cancer in this high-risk group. This straightforward step could significantly improve the coordination and quality of preventive care offered by primary care to people with Lynch syndrome, and in turn reduce preventable cancer diagnoses and deaths.
  • #95 Primary care: the ‘linchpin’ in Lynch syndrome | British Journal of General Practice
    https://bjgp.org/content/75/754/198
    Primary care is often the first point of contact for patients after diagnosis and for ongoing care. A key role of GPs includes assessing patients suitability for, and prescribing of, daily aspirin for colorectal cancer prevention, as recommended by National Institute for Health and Care Excellence (NICE) for those with Lynch syndrome. […] A persistent challenge reported by people with Lynch syndrome is a lack of consistent and coordinated health care to help support them to manage their condition generally, and in the specific context of chemopreventive aspirin. […] Improved communication from secondary and tertiary care is needed to enable consistent coding of Lynch syndrome on patient health records and for primary care to fulfil its role as the linchpin of comprehensive care. However, for the small number of patients with Lynch syndrome in general practices, identifying these patients and offering chemoprevention has the potential to greatly reduce the incidence of cancer in this high-risk group. This straightforward step could significantly improve the coordination and quality of preventive care offered by primary care to people with Lynch syndrome, and in turn reduce preventable cancer diagnoses and deaths.
  • #96 Primary care: the ‘linchpin’ in Lynch syndrome | British Journal of General Practice
    https://bjgp.org/content/75/754/198
    Primary care is often the first point of contact for patients after diagnosis and for ongoing care. A key role of GPs includes assessing patients suitability for, and prescribing of, daily aspirin for colorectal cancer prevention, as recommended by National Institute for Health and Care Excellence (NICE) for those with Lynch syndrome. […] A persistent challenge reported by people with Lynch syndrome is a lack of consistent and coordinated health care to help support them to manage their condition generally, and in the specific context of chemopreventive aspirin. […] Improved communication from secondary and tertiary care is needed to enable consistent coding of Lynch syndrome on patient health records and for primary care to fulfil its role as the linchpin of comprehensive care. However, for the small number of patients with Lynch syndrome in general practices, identifying these patients and offering chemoprevention has the potential to greatly reduce the incidence of cancer in this high-risk group. This straightforward step could significantly improve the coordination and quality of preventive care offered by primary care to people with Lynch syndrome, and in turn reduce preventable cancer diagnoses and deaths.
  • #97 Lynch Syndrome: Reducing the Risk of Cancer with Genetic Precision – Advances for Medical Professionals | NewYork-Presbyterian
    https://www.nyp.org/publications/professional-advances/gastro/lynch-syndrome-reducing-the-risk-of-cancer
    Surveillance colonoscopy exams to identify polyps have been shown to decrease incidence and mortality for colorectal cancer in this patient population. […] The early identification of individuals with Lynch syndrome and their at-risk family members is crucial for the implementation of effective cancer prevention strategies. […] At Weill Cornell Medicine a study is currently underway to investigate gene-dependent management of risk in Lynch syndrome and how to best manage and screen people based on their individual genetic mutations. […] The goal is to identify, through these risk assessment tools, as many previvors as we can to offer them preventative screening, early detection, and preventative strategies. […] The tool, PREM, which is covered by insurance, has been incorporated into national guidelines established to help identify patients with cancer, but also unaffected individuals who, based on their family history, would benefit from genetic evaluation and testing.
  • #98 Lynch Syndrome: Reducing the Risk of Cancer with Genetic Precision – Advances for Medical Professionals | NewYork-Presbyterian
    https://www.nyp.org/publications/professional-advances/gastro/lynch-syndrome-reducing-the-risk-of-cancer
    Surveillance colonoscopy exams to identify polyps have been shown to decrease incidence and mortality for colorectal cancer in this patient population. […] The early identification of individuals with Lynch syndrome and their at-risk family members is crucial for the implementation of effective cancer prevention strategies. […] At Weill Cornell Medicine a study is currently underway to investigate gene-dependent management of risk in Lynch syndrome and how to best manage and screen people based on their individual genetic mutations. […] The goal is to identify, through these risk assessment tools, as many previvors as we can to offer them preventative screening, early detection, and preventative strategies. […] The tool, PREM, which is covered by insurance, has been incorporated into national guidelines established to help identify patients with cancer, but also unaffected individuals who, based on their family history, would benefit from genetic evaluation and testing.
  • #99 Lynch Syndrome: Reducing the Risk of Cancer with Genetic Precision – Advances for Medical Professionals | NewYork-Presbyterian
    https://www.nyp.org/publications/professional-advances/gastro/lynch-syndrome-reducing-the-risk-of-cancer
    The current goal of gastrointestinal genetic specialists is to increase awareness and genetic testing among at-risk first-degree relatives, as well as extended family, as the gene associated with Lynch syndrome is inherited in an autosomal dominant pattern from one generation to the next. […] Many women with Lynch syndrome may require annual endometrial biopsies because of the nature of their genetic mutation. […] The availability of this combined approach has been shared with gynecologists beyond NewYork-Presbyterian, who have readily referred their patients, recognizing that the service provides a heightened level of care that they can offer to this unique patient population. […] Lynch syndrome, with its known genetic predisposition to gynecologic cancers, is more common than hereditary breast and ovarian cancer syndrome caused by BRCA1 and BRCA2 mutations, and recent studies have suggested that breast cancer may be included in the spectrum of Lynch syndrome-associated cancers.
  • #100 Lynch Syndrome: What Patients Need to Know – The Patient Story
    https://thepatientstory.com/medical-experts/lynch-syndrome-what-patients-need-to-know/
    Lynch syndrome is common enough that I think any young patient or any patient who has colorectal cancer, if not now but in the near future, really should be tested for this syndrome. […] Everyone with a diagnosis of cancer should have access to hereditary genetic testing if they want it…The tougher question is: how do we test everyone else? If you’re testing patients with cancer, you’re behind the eight ball. […] What we want to do is test people who are in their 20s and 30s, who have their lives ahead of them, can plan ahead…Because that’s where we can really make an impact on preventing cancer in the population. […] It does [help], especially the immunotherapy part. Immunotherapy really put Lynch syndrome on the map a few years ago. […] The main thing I would caution patients [about] if they went through their primary care provider is that genetic counseling is really an integral part of this. […] When you do a large panel, you have a high chance that you may find uncertain results in the Lynch genes or other genes that you don’t really know the answers to.
  • #101
    https://www.aboutgeneticcounselors.com/Resources-to-Help-You/Post/lynch-syndrome-a-common-yet-under-recognized-hereditary-cancer-predisposition
    Individuals with microsatellite unstable tumors (and/or tumors that are not expressing any of the Lynch syndrome proteins) are more likely to respond to treatment with immunotherapy. […] A genetic counselor can help ensure the correct genetic test(s) are performed, interpret the test results, and help patients understand how to use the information in surveillance, risk reduction, and treatment decisions. […] Lynch syndrome cancer surveillance includes earlier and more frequent colonoscopy. Many women with Lynch syndrome consider risk-reducing hysterectomy with removal of their ovaries and fallopian tubes. […] Work has been ongoing to learn how to reduce cancer risks and perhaps prevent cancers in individuals with Lynch syndrome. […] If health care providers and community members alike become more aware of Lynch syndrome, we can move from identifying individuals with Lynch syndrome after their cancer diagnosis to identifying healthy individuals who could take steps to help protect their health so they may never develop cancer at all.
  • #102 Diagnosis and management of Lynch syndrome | Frontline Gastroenterology
    https://fg.bmj.com/content/13/e1/e80
    Lynch syndrome (LS) requires lifelong coordinated multidisciplinary care, where the application of interventions provides many opportunities to reduce cancer risk. […] Patients diagnosed with LS require lifelong coordinated multidisciplinary care, where the application of interventions provides many opportunities to reduce cancer risk. […] Colonoscopic surveillance should be performed every 2 years starting at age 25 years for MLH1, or MSH2 pathogenic variant carriers, or age 35 years for MSH6, or PMS2 pathogenic variant carriers. […] Women should be counselled on prophylactic hysterectomy and bilateral salpingo-oopherectomy from age 40 years (MLH1, MSH2 and MSH6 variant carriers). […] Chemoprophylaxis with daily aspirin for at least 2 years is recommended in patients 70 years old diagnosed with LS to reduce long-term CRC risk.
  • #103 Understanding Lynch syndrome: implications for nursing – PubMed
    https://pubmed.ncbi.nlm.nih.gov/17623626/
    Colorectal cancer (CRC) is the second-leading cause of cancer-related death in the United States. Approximately 10% of CRC is hereditary, and hereditary nonpolyposis CRC (HNPCC), or Lynch syndrome I, is the most common form. […] Nursing care for patients with Lynch syndrome includes identifying patients who would benefit from genetic counseling, providing education, and assessing and meeting patient psychosocial needs.
  • #104 Understanding Lynch Syndrome: Implications for Nursing | Oncology Nursing Society
    https://www.ons.org/publications-research/cjon/11/3/understanding-lynch-syndrome-implications-nursing
    Colorectal cancer (CRC) is the second-leading cause of cancer-related death in the United States. […] Nursing care for patients with Lynch syndrome includes identifying patients who would benefit from genetic counseling, providing education, and assessing and meeting patient psychosocial needs.
  • #105 Lynch Syndrome: Reducing the Risk of Cancer with Genetic Precision – Advances for Medical Professionals | NewYork-Presbyterian
    https://www.nyp.org/publications/professional-advances/gastro/lynch-syndrome-reducing-the-risk-of-cancer
    Surveillance colonoscopy exams to identify polyps have been shown to decrease incidence and mortality for colorectal cancer in this patient population. […] The early identification of individuals with Lynch syndrome and their at-risk family members is crucial for the implementation of effective cancer prevention strategies. […] At Weill Cornell Medicine a study is currently underway to investigate gene-dependent management of risk in Lynch syndrome and how to best manage and screen people based on their individual genetic mutations. […] The goal is to identify, through these risk assessment tools, as many previvors as we can to offer them preventative screening, early detection, and preventative strategies. […] The tool, PREM, which is covered by insurance, has been incorporated into national guidelines established to help identify patients with cancer, but also unaffected individuals who, based on their family history, would benefit from genetic evaluation and testing.
  • #106 Lynch Syndrome Screening and Treatment Program | Massachusetts General Hospital
    https://www.massgeneral.org/cancer-center/treatments-and-services/cancer-genetics/lynch-syndrome
    The Lynch Syndrome Screening and Treatment Program provides expert and lifelong care for individuals and families affected by Lynch syndrome. […] The Lynch Syndrome Screening and Treatment Program at Mass General Cancer Center gives complete, personalized, and lifelong care for patients and families with Lynch syndrome. […] The Lynch Syndrome Screening and Treatment Program provides expert and lifelong care for individuals and families affected by Lynch syndrome and makes sure they get the best possible medical management and support. […] We are here to help you understand Lynch syndrome better and offer appropriate treatment and screening options. […] People with Lynch syndrome can significantly decrease their risk of developing cancer with careful medical follow-ups, which are available at the Lynch Syndrome Screening and Treatment Program at Mass General Cancer Center.