I-Association of Community Community Centers (ACCC) Uhlelo lweMetastatic Breast Cancer Project luyisinyathelo semfundo esibhekene nezidingo zokuxhumana nezindinganiso zabesifazane nabesilisa abaphila nomdlavuza webele we-metastatic. Umgomo oyinhloko walesi sinyathelo uthuthukisa ukwelashwa nokuphathwa komdlavuza wesifuba we-metastatic esimweni somphakathi. I-Avon Breast Cancer Crusade, i-Cancer Support Community, ne-Metastatic Breast Cancer Alliance babelana ngobuchwepheshe babo nezinsiza njengezakwethu ze-ACCC kulolu hlelo, ngezimali nokusekelwa okuhlinzekwa yi-Pfizer Oncology.
"I-ACCC Metastatic Breast Cancer Project iqondisa ngokuqondile isidingo esibonwe njengengxenye yeCans Cancer yethu : I-Story Half Told isinyathelo -isidingo sokwenza izingxoxo ezikhiqizayo kakhulu phakathi kwabadokotela neziguli ezine nomdlavuza wesifuba," kusho uJulia Perkins Smith, MD, North. IziMpilo zeMelika zaseMelika, i-Pfizer Oncology. "U-Pfizer uzibophezele ngokujulile ekusizeni ukuhlangabezana nezidingo eziyingqayizivele yomphakathi we-MBC, futhi sijabule ukusekela umsebenzi omusha we-ACCC okwenza kule ndawo. Njenge-ACCC, ithemba lethu ukuthi le phrojekthi izokwenza iziguli ezine-MBC zizuze ngcono ukuqonda isifo sabo futhi babe nezwi elinamandla ekwenzeni izinqumo zokwelapha. "
Izinkinga Zokuxhumana
Iziguli: Ukuxilongwa komdlavuza wesifuba we-metastatic kunezinkinga zokukhulumisana ezihambisanayo; kuvame ukuqondwa kahle. Ngezinye izikhathi, ngisho neziguli zikwazi ukuqonda uma u-oncologist ekhuluma nabo ngesifo sabo se-metastatic, isidingo sokwelashwa okuqhubekayo, imiphumela engalindelekile, nendlela isifo sabo esiyobathinta ngayo izinga lokuphila nokulinda kwesikhathi.
Okokuqala, iziguli eziningi ziphazamiseka ukuxilongwa kwazo nokuthi zitshelwe; bayanqika ukubuza imibuzo. Ngisho njengoba iziguli ziqhubeka ukwelashwa, ezinye iziguli azihlanganyeli ukwesaba kwabo namalungu enkampani yabo yokunakekela noma zicela ukusekelwa ngokomzwelo abadinga. Ngokuvamile bavala izingxoxo zabo ne-oncologist yezokwelapha ekulawuleni imiphumela emibi, kanye nokuphumelela kokwelapha kwamanje.
Ngokombiko wocwaningo lwe-intanethi owenziwa yi-Cancer Support Community, iningi lamagciwane omdlavuza webele we-metastatic libike ukuthi linokuxhumana okuhle neqembu labo lokunakekelwa kwezempilo. Kodwa iziguli ezimbili kwabangu-5 zithi azizange zixoxe ngokukhathazeka okujulile ngempilo yabo engokomzwelo, ukwelashwa, izimpawu, kanye nekhwalithi yokuphila.
"Ulwazi lomuntu ngamunye mayelana nomdlavuza wesifuba se-metastatic isici esibalulekile ekubambe iqhaza kolwazi ekwenzeni izinqumo zokwelashwa. Ukwaziswa futhi kudlala indima ebalulekile yomzwelo ekunciphiseni ukungabi nokuqiniseka, ukungabi nokulawula nokucindezeleka. Noma kunjalo, iziguli eziningi azitholi ulwazi olwanele emaqenjini abo okunakekela impilo; ukuqonda kwabo isimo sesifo kanye nemigomo yokwelapha ngokuvamile kuhlupheka; abaningi bakholelwa ukuthi bayokwelashwa. Ukulinganiselwa kwesikhathi kanye nezinsiza kumikhakha ematasa ye-oncology kungabangela ukukhulumisana okungahambi kahle kwesiguli-nodokotela, kufaka phakathi indlela eyodwa "yokukhulumisana nodokotela owazi kahle kakhulu". Iziguli nazo zibika ukudideka ngemithombo ethembekileyo yolwazi. "Kubikwa UKatherine Crawford-Gray, uMqondisi weMetastatic Breast Cancer Alliance.
Kubantu: Ngenkathi kukhona ukuqwashisa okubanzi komdlavuza wesifuba ngenxa yemilayezo evela ku-TV nasomsakazweni, futhi emaphephandabeni okuphrinta, le milayezo ngokuvamile igxile emdlalweni webele wesifuba , hhayi iSigaba IV, umdlavuza webele we-metastatic.
Kodwa-ke, ukulinganisa kufaka inani leziguli eziphila nezifo ze-metastatic phakathi kuka-150,000 no-250,000 e-US Unyaka ngamunye, iziguli ezingama-40,000 zifa ngesifo. Amaphesenti angaba ngu-6-10 azo zonke izinhlobo zomdlavuza wamabele asanda kutholakala. Phakathi kwamaphesenti angu-20-30 azo zonke izifo zomdlavuza webele uzoba metastatic, okwenzeka eminyakeni emihlanu, engu-10, engu-15 + elandela ukwelashwa komdlavuza webele wesandulela.
Umdlavuza wesifuba we-metastatic yisigaba esiphezulu kakhulu somdlavuza webele, lapho umdlavuza usakaze ngaphezu kwebele ezithombeni ezikude njengamaphaphu, isibindi, ubuchopho kanye namathambo. Nakuba kuyaphiliswa, akuyona ikhambi.
Akuhambisani nemilayezo ethi "uzizwa kahle" mayelana nokusinda umdlavuza webele njalo kuvunyelwe kuthelevishini, emsakazweni nakumaphephandaba.
Ngenxa yokuthi iziguli zamathambo zihlala emasikweni lapho kucatshangwa khona ukuthi umphumela ojwayelekile ngemva kokuqeda ukwelashwa, abaningi abanesifo se-metastatic bazizwa bengaphandle emphakathini womdlavuza webele. Bavame ukubuzwa umndeni nabangane ukuthi baqonde ukuthi kungani kufanele baphathe impilo yabo yonke impilo yabo.
Ngokusho kwe-Metastatic Breast Cancer (MBC) Alliance, imiyalezo yomphakathi mayelana nomuthi webele womdlavuza webele webele futhi isinda kakhulu kangangokuthi abantu abaxilongwa eSiteji IV esinomdlavuza webele we-metastatic bangase banqatshelwe ukuthi bahlulekile ukunakekelwa ngokwabo noma ngaphansi kokuhlolwa kwonyaka.
Sibutsetelo Project Project ye-Metastatic Breast Cancer
UMarianne Gandee, uMqondisi Osizayo, uMnyango Wezinhlinzeko, i-ACCC, uchaza iphrojekthi ngokuthi, "Uhlelo lwethu lwezemfundo lwe-Breast Metastatic Breast lufuna ukunika amandla iziguli ze-MBC ngokunikeza abanikezeli bezokwelapha ngamathuluzi nezinsiza ukubhekana nezikhala ekunakekeleni nokuthuthukisa ukuxhumana phakathi kweziguli nabahlinzeki. "
Iphrojekthi izohlinzeka:
- Ukuhambela izindawo ezakhiweni ngezinhlelo ezikhombisa izindlela ezisebenzayo zokwelashwa nokuphathwa kweziguli.
- Ukukwabelana ngolwazi mayelana nesimo samanje somuthi we-metastatic breast breast and management patient.
- Ikhasi lewebhu kanye nohlelo lokusebenza
- Izinto zokufunda ezifanele ukusetshenziswa wonke amalungu eqembu lokunakekela umdlavuza.
- Ibhuku lokusebenzela emisebenzini ephumelelayo ekunakekeleni iziguli zomdlavuza webele we-metastatic.
- Ukufinyelela kwi-Registry Cancer Experience Community Registry: I-Metastatic Breast Cancer.
- Ngo-2007, ukuthuthukiswa kwezinhlelo zokusebenza ukusiza izinhlelo zeLungu le-ACCC zithuthukisa ukwelashwa nokuphathwa kwabesilisa nabesilisa abanomdlavuza webele we-metastatic.
I-Association of Community Community Centers, inhlangano kazwelonke yokugqugquzela nokufundisa kusukela ngo-1974, iyisithangami sokubhekana nezinkinga ezithinta izinhlelo zomdlavuza womphakathi wonke. Ngenxa yalokho, i-ACCC ingasebenzisa izinsiza zayo kanye nabalingani bayo eMkhandlwini weMetastatic Breast Cancer ukuze kufinyelele futhi kusize amalungu ayo ekubhekaneni nezidingo zokuxhumana zeziguli ezinomdlavuza webele we-metastatic. Amalungu ahlanganisa abaqeqeshi abangaphezu kuka-22 000 abanakekelwa umdlavuza kusukela ezibhedlela ezingu-2 000 nasemisebenzini yonke. I-community oncologists iphatha iziguli ezingaphezu kuka-75 zamagciwane omdlavuza.
UMengameli we-ACCC uJennie R. Crews, MD, MMM, FACP wathi, "Njengoba silwela ukuletha ukunakekelwa okuqondene nomuntu siqu, kufanele sikwazi ukunika amandla iziguli ukuba zihlanganyele ngokugcwele izingxoxo ezimbili nabahlinzeki bazo." Uhlelo lweMetastatic Breast Cancer Project eklanyelwe ukwenza lokho nje ngokukhulisa ingxoxo yomdlavuza webele wamanje ukuze ixazulule izikhala ekukhulumisaneni phakathi kwezifo zakuqala kanye nezibalo; futhi sithuthukise ukuxhumana mayelana nokwelashwa nokuphathwa komdlavuza wesifuba we-metastatic esimweni sokuhlaselwa kwe-oncology yomphakathi.
Izindinganiso zozakwethu emkhakheni we-Metastatic Breast Cancer Project
"I-Avon Breast Cancer Crusade ukuziqhenya ukusiza ekukhanyeni izidingo eziyingqayizivele zeziguli ze-MBC nemindeni yabo futhi kuthuthukise amandla omphakathi wesifo somdlavuza webele. "kusho uCarolyn Ricci, uMqondisi Wezinhlelo, i-Avon Breast Cancer Crusade.
"I-Metastatic Breast Cancer Alliance ikholelwa ukuthi ukusebenzisana, njengaleyo esinayo ne-Association of Community Community Centers for Project yabo ye-Metastatic Breast Cancer Project, kubalulekile uma sithonya izinguquko ezinkulu eziholela ekuthuthukiseni ikhwalithi nobungako bokuphila abantu abaphila nomdlavuza webele we-metastatic. Indima yethu ekusebenzeni ne-ACCC ukuletha ubuchwepheshe bamalungu ethu ekucwaningweni nasekuthuthukiseni izinhlelo. Enye yezinzuzo ze-Alliance yukuthi sizoqonda kangcono izidingo zokuxhumana zemitholampilo yomdlavuza womphakathi futhi, ngethemba lokuthi, sizokwazi ukusebenza ngokugcwele nezikhungo ukuhlangabezana nalezi zidingo.
I-Alliance imeme uDkt Corrine Ellsworth Beaumont ukucwaninga izithiyo zokuxhumana ezikhona futhi ukuphakamisa izindlela ezintsha zokubhekana nabo. Ngenxa yesigaba sokuqala salolu cwaningo, sihlola i-Tool Tool Kit esekelwe ekubunjweni okubukwayo ngombhalo omncane. Ukubambisana kwethu ne-ACCC emisebenzini yabo ye-Metastatic Breast Cancer Project kusiza ubulungu babo ngolwazi nokufinyelela kule nsiza entsha, "kusho uKatherine Crawford-Gray, uMqondisi we-Metastatic Breast Cancer Alliance.
I-Cancer Support Community ye-Cancer Experience Registry, i-registry kuphela yohlobo lwayo, ivumela iziguli nabanakekeli ukuba babelane nakho okuhlangenwe nakho kwabo okuyingqayizivele ukusiza ukuthuthukisa ikhwalithi yokuphila kubantu abaphila nokuhlunga umdlavuza. Isigaba esikhethekile se-Registry sinikezelwa ekuqondeni izidingo zomphakathi nezomzwelo zabantu abaphila nomdlavuza webele we-metastatic. Ulwazi olukhishwe kwi-Registry luzohlinzeka abalingani ngezindlela ezihamba phambili ezibhekene nezinselelo ezihlobene nomdlavuza webele we-metastatic. Lokhu kutholakala kuzosiza ekuthuthukiseni izinsiza kanye namathuluzi afanelekile futhi kusize ekunakekeleni ukunakekelwa okugxilwe ngesineke, "kusho uJoanne Buzaglo, PhD, Senior Vice President, Research and Training Institute of the Cancer Support Community.
Izwi elivela
Uma unomdlavuza webele we-metastatic, udinga futhi ufanelwe ithimba lokunakekela umdlavuza elivulekile ukuphendula imibuzo yakho futhi kuthatha isikhathi ukulalela ukuthi uzizwa kanjani. Uma usanda kutholakala ukuthi, ngaphandle kokuba ube nobuhlobo obunelisayo nomuntu oncologist ophethe ukwelashwa kwakho ngomdlavuza wesifuba sangaphambili, kuzodingeka uthole i-oncologist yezokwelapha. Kungumqondo omuhle ukuhlangana nababili noma ngaphezulu oncologists ngaphambi kokukhetha ukuthi ngubani ozophatha ukunakekelwa kwakho okuqhubekayo.
Ngaphandle kokukhuluma ngecebo lakho lokwelapha, le mihlangano izokunika ithuba lokunquma izinga lakho lokunethezeka nge-oncologist ngayinye ngoba uzoba yingxenye ebalulekile yokunakekelwa kwakho. Kudingeka uzizwe ukuthi ungakhuluma ne-oncologist yakho yezokwelapha namanye amalungu eqembu lakho lokunakekela mayelana nanoma yikuphi okukhathazayo okuthinta izinga lakho lokuphila.
Ukujoyina iqembu lokusekela kweziguli zomdlavuza webele lomzimba kuzokusiza ukunciphisa ukuhlukaniswa okungenzeka ukuthi uzizwa. Kuzokunika ithuba lokuhlanganyela nabanye abangaqondana nalokho okuhlangenwe nakho.
Ukujoyina i-Cancer Experience Registry kwesigaba sabesifazane namadoda ahlala nesifo se-metastatic isisindo esihle sokuhlanganyela okuhlangenwe nakho kwakho, ukutholakala kwezinsiza, nokufunda kwabanye ngomdlavuza wesifuba we-metastatic. Ikhululekile, iyimfihlakalo, futhi ifinyeleleke kunoma ubani oye wathola umdlavuza noma ungumnakekeli wesiguli somdlavuza.
> Imithombo:
> I-ACCC-Launches-Initiative-to-Address-Communications-Izinselele-Ebhekiswe yi-Metastatic-Breast-Cancer-Patients, News Release, ngo-June 2016
> I-MBC Alliance. Ukushintsha Indawo Yabantu Abaphila Nge-Metastatic Breast Cancer. I-Metastatic Breast Breast Landscape Analysis: Umbiko Wokucwaninga, Okthoba 2014,
> E-Office Ethnographic Study, exhaswe yi-Pfizer Oncology, 2014