I-Association of Centers of Cancer Centers (ACCC) Iprojekthi yeCastus Breast Metastatic isicwangciso sokufundisa esijongene neemfuno zonxibelelwano kunye nemiba yabasetyhini kunye nabesilisa abahlala nomhlaza wesibeletho se-metastatic. Injongo ephambili yale nyathelo iphucula unyango kunye nokulawulwa komhlaza wesifo se-metastatic kwiindawo zokuhlala. I-Avon Breast Cancer Crusade, i-Cancer Support Community, kunye ne-Metastatic Breast Cancer Alliance babelana ngobuchule babo kunye nezibonelelo njengamaqabane a-ACCC kule nyathelo, ngenkxaso kunye nenkxaso ehlinzekwa yi-Pfizer Oncology.
I-ACCC Iprojekthi yeCataltic Breast yeMastastatic isichaza ngqo imfuno echongiweyo njengenxalenye yeCarcer Breast: I-Story Half Inqaku elichaziweyo- isidingo sokwenza iingxoxo ezivelisa ngakumbi phakathi koogqirha kunye nezigulane ezineengxaki zomhlaza we-metastatic, "watsho uJulia Perkins Smith, MD, North. I-America yeMicimbi yezezoNyango, iPfizer Oncology. "I-Pfizer izimisele kakhulu ekuncedeni iimfuno ezizodwa ze-MBC, kwaye siyavuya ukuxhasa umsebenzi omtsha we-ACCC owenza kule ndawo. Njenge-ACCC, ithemba lethu kukuba le projekthi iza kwenza izigulane ze-MBC zifumane ngcono ukuqonda kwesifo sabo kunye nelizwi elinamandla kwisigqibo sokwenza isigqibo. "
Imiba yoNxibelelwano
Kwizigulane: Ukuxilongwa komhlaza wesifo se-metastatic kunemiba yoqhagamshelwano; kudla ngokungaqondi. Ngamanye amaxesha, ngaba izigulane zikwazi ukuqonda xa i-oncologist ikhuluma nabo ngesifo sabo se-metastatic, imfuno yokufumana unyango olungapheliyo, iziphumo ezingalindelekanga, nokuba njani isifo sabo siya kuba negalelo kumgangatho wobomi kunye nokuphila kwithuba.
Ekuqaleni, izigulane ezininzi ziphazamiseka ngokuxilongwa kwabo kunye noko baxelelwa khona; bayenqikaza ukubuza imibuzo. Njengokuba izigulane ziqhubeka zonyango, ezinye izigulane azibandakanyi ukwesaba kwabo ngamalungu eqela labo lokunakekela okanye zicela inkxaso yemoya abayidingayo. Bahlala bevala iingxoxo zabo kunye ne-oncologist yezokwelapha ekulawuleni imiphumo emibi, kunye nokusebenza kwonyango langoku.
Ngokutsho kwengxelo yophando lwe-intanethi eyenziwa yiCancer Support Community, ininzi yezigulane zomhlaza zesifuba se-metastatic zichaze ukuba zinxibelelwano olufanelekileyo kunye neqela labo lononophelo lwempilo. Kodwa izigulane ezi-2 kwezi-5 zathi azizange zixubushe iingxaki ezinzulu malunga nempilo yabo yengqondo, unyango, iimpawu kunye nomgangatho wobomi.
Ulwazi oluthile malunga nomhlaza wesifuba se-metastatic ibaluleke kakhulu ekuthatheni inxaxheba kolwazi kwi-decision making making. I nkcukacha nazo zidlala indima ebalulekileyo ekuthintekeleni ukungaqiniseki, ukungabikho kolawulo kunye noxinzelelo. Sekunjalo, izigulane ezininzi azifumani ulwazi olwaneleyo kumacandelo ezonyango; ukuqonda kwabo uhlobo lwesifo kunye neenjongo zonyango zihlala zihluphekile; abaninzi bakholelwa ukuba baya kuphiliswa. Ukukhawulelwa kwexesha kunye nezibonelelo kwiinkqubo ze-oncology ezixakekile zingabangela intetho yegulane engagulanga isigulane, kuquka nenye indlela "ulwalamano-uyazi kakuhle" unxibelelwano. Izigulana zixela ukudideka malunga nemithombo ethembekileyo yolwazi. " UKatherine Crawford-Grey, uMlawuli weMetastatic Breast Cancer Alliance.
Uluntu: Nangona kukho ulwazi olusasazekayo lomhlaza wesifuba ngenxa yemilayezo ebonakalayo kwiTV nakwi-radiyo, kwaye kwimidiya yokushicilela, le miyalezo igxininisa kwisifo somhlaza wesifuba sokuqala , kungekhona isigaba se-IV, umhlaza wesibeletho se-metastatic.
Sekunjalo, uqikelelo lubonisa inani lezigulana eziphila ngesifo se-metastatic phakathi kwama-150,000 kunye nama-250,000 e-US ngamnye Unyaka, izigulane ezingama-40,000 zifa ngenxa yesifo. Phantse iipesenti ezingama-6-10 zazo zonke iintsholongwane zentsholongwane. Phakathi kwama-20-30 ekhulwini kuwo onke amachiza omhlaza uya kuba semastasti, eqhubekayo 5, 10, 15+ iminyaka emva kokunyanga kwintsholongwane yomhlaza wesifuba.
Umhlaza wesibeletho seMetastatic yisona esona siphumelele kakhulu kwisifo somhlaza wesifuba, nomhlaza usasaze ngaphaya kwesifuba kwizitho ezikude ezifana nemiphunga, isibindi, ingqondo kunye namathambo. Nangona uphathwe, awuphilwanga.
Akuhambelani "nemizwa emihle" ngemiyalezo ngokusasaza komhlaza wesibeleko odlalwa rhoqo kumabonwakude, kwirediyo nakusasazo.
Ngenxa yokuba izigulane zeemetastatic zihlala kwinkcubeko apho kuqhutyelwa ingqondo njengokuba isiphumo esiqhelekileyo emva kokuzalisa unyango, abaninzi abanesifo se-metastatic baziva ngathi bangaphandle kwintsholongwane yomhlaza wesifuba. Bavame ukucelwa yintsapho kunye nabahlobo ukuba bachaze ukuba kutheni kufuneka babe kunyango bonke ubomi babo.
Ngokutsho kweMatricatic Breast Cancer (MBC), ukuthunyelwa komyalezo malunga nomhlaza webele webele kunye nokunyamekela kuninzi kangangokuba abantu abaxilongwa kwiSigaba IV abanomdlavuza webele we-metastatic bangaxhatshazwa ngoluvo lokuba bahlulekile ukunyamekela ngokwabo okanye abahlolwayo ngonyaka.
Ubume beProjekthi yeCastus Breast Metastatic
UMarianne Gandee, uMlawuli oNcedisayo, uMboneleli weMfundo, i-ACCC, uchaza iprojekthi ngokuthi, "Inkqubo yethu yemfundo ye-Canast yeMastastatic ifuna ukuxhobisa izigulane ze-MBC ngokunika ababoneleli ngoncedo lwempilo kunye nezixhobo zokujongana nezikhalazo ekunyamekeleni nasekuphuculeni uxhulumano phakathi kwezigulane kunye nababoneleli. "U
Iprojekthi iya kunika:
- Ukutyelelwa kwiindawo kwiindawo ezibonisa iinkqubo ezifanelekileyo zokonyango kunye nokuphathwa kwezigulane.
- Ukwabelana ngolwazi ngokubhekiselele kwimeko yangoku yesifo somhlaza wesifo se-metastatic and management management.
- Ikhasi lewebhu kunye ne-app
- Izixhobo zemfundo ezifanele ukusetyenziswa ngabo bonke amalungu eqela lokunyamekela umdlavuza.
- Incwadi yomsebenzi kwiindlela ezisebenzayo zokunyamekela izigulane zomhlaza zesifuba se-metastatic.
- Ukufikelela kwi-Registry Support Community Cancer Registry: I-Canast Metastatic Breast Cancer.
- Ngo-2007, ukuphuhliswa kwezicwangciso zokusebenza ukuncedisa iinkqubo zelungu le-ACCC ziphucula unyango kunye nokuphathwa kwabasetyhini kunye namadoda anomhlaza wesibeletho.
Umbutho weZiko leNgcaciso yeCancer, i-national advocacy and education organization ukususela ngowe-1974, iforamu yokujongana nemiba echaphazela iinkqubo zomhlaza wesizwe kulo lonke. Ngaloo ndlela, i-ACCC ingasebenzisa izibonelelo zayo kunye namaqabane ayo kwiProjekthi yeCataltic Breast yaseMetastatic ukufikelela kunye nokunceda amalungu ayo ekujonganeni neemfuno zonxibelelwano zezigulane zomhlaza wesisu se-metastatic. Amalungu aquka abaqeqeshi bamanyango abangaphezu kwama-22,000 abavela kwizibhedlele ezi-2,000 kunye nezenzo kulo lonke. Abahlali be-oncologists baphatha ngaphezu kweepesenti ezingama-75 zezigulane zomhlaza.
UMongameli we-ACCC uJennie R. Crews, MD, i-MMM, i-FACP yathi, "Njengoko silwela ukunikezela ngononophelo olusisigxina, kufuneka sixhobise izigulane ukuba zithathe inxaxheba ngokupheleleyo kwiingxoxo ezimbini kunye nababoneleli babo." Iprojekthi yeCastry Breast Metastatic Project yenzelwe ukwenza oko nje ngokwandisa ingxoxo yomhlaza wengomso yangoku ukujongana nezikhalazo zokunxibelelana phakathi kwezifo zakuqala kunye nezidumbu; kunye nokuphucula unxibelelwano malunga nophatho kunye nokulawulwa komhlaza wesifo se-metastatic kwi-setting ye-oncology yoluntu.
Inxaxheba yoMlingani kwiProjekthi yeCastry Breast Metastatic
"I-Avon Breast Cancer Crusade abakhukhumeleyo ukunceda ukukhanya okukhanyayo kwiimfuno ezikhethekileyo zezigulane ze-MBC kunye neentsapho zabo kunye nokuqhubela phambili ukukwazi ukuhlangabezana nezilwanyana, "kusho uCarolyn Ricci, uMlawuli weProgram, u-Avon Breast Cancer Crusade.
"I-Metastatic Breast Cancer Alliance iyakholelwa ukuba intsebenziswano, njengaleyo esinayo kunye noMbutho weZiko loLuntu lweCancer Project yeProjekthi yeCataltic Breast Breast, ibaluleke kakhulu ukuba sichaphazele ukuba utshintsho olukhulu olukhokelela ekuphuculeni umgangatho nobungakanani bomi abantu abaphila nomhlaza wesibeletho sebele. Indima yethu ekusebenzeni ne-ACCC kukuzisa ubuchule bamalungu ethu kuphando nophuhliso lwamanyathelo. Enye yeenzuzo zeManyano kukuba siyakuqonda kangcono iimfuno zonxibelelwano zeekliniki zomhlaza zentlalo kwaye, sinethemba lokuba, sinokuthatha inxaxheba enkulu ekusebenzeni namaziko ukuhlangabezana nale mfuno.
I-Alliance imisele uDkt Corrine Ellsworth Beaumont ukuba acinge imingcipheko yoqhagamshelwano olukhoyo kwaye aphakamise iindlela ezintsha zokujongana nazo. Njengomphumo weSigaba esisodwa salolu cwaningo, sihlola iComputer Tool Kit esekelwe kwindlela yokubonwa ngumbonakalo kunye nesicatshulwa esincinci. Ubambiswano bethu ne-ACCC kwiProjekthi yeCataltic Breast yaseMetastatic inceda ekubambeni ubulungu babo ngolwazi kunye nokufikelela kule ncedisi, "utshilo uKatherine Crawford-Gray, uMlawuli weMetastatic Breast Cancer Alliance.
I-Cancer Support ye-Cancer Experience Registry, i-registry kuphela yohlobo lwayo, ivumela izigulane kunye nabanonophelo ukuba babelane ngamava abo ahlukileyo ukuba bancede ekuphuculeni umgangatho wobomi kubantu abaphila nokuhlaselwa ngumhlaza. Icandelo elikhethekileyo leRejistri linikezelwa ekuqondeni iimfuno zoluntu nezemvakalelo zabantu abaphila nomhlaza wesibeletho se-metastatic. Ulwazi olususwe kwiRejistri luya kunika amaqabane aneendlela zokukhawuleza ezijongene nemingeni ehambelana nomdlavuza webele we-metastatic. Ezi ziphumo ziza kunceda ekuphuhlisweni kwezibonelelo kunye nezixhobo kunye nokuncedisa ukunyamekela ngononophelo lwengqondo, "kusho uJoanne Buzaglo, oyi-PhD, uMlawuli oyiNtloko kaMongameli, iNkcazo yophando kunye noQeqesho lweCancer Support Community.
ILizwi
Ukuba unomdlavuza webele we-metastatic, udinga kwaye unelungelo leqela lokunyamekela umdlavuza ovulekile ukuphendula imibuzo yakho kwaye uthatha ixesha lokuphulaphula indlela ozivakalelwa ngayo. Ukuba usanda kutshatyalaliswa, ngaphandle kokuba ube nolwalamano olwanelisayo kunye ne-oncologist oye waphatha unyango lwakho kwisifo somhlaza wesifuba sangaphambili, kuya kufuneka ufumane i-oncologist yezokwelapha. Ingqiqo enhle ukudibana nabaninzi okanye ngaphezulu kwi-oncologists ngaphambi kokukhetha ngubani oya kulawula ukunakekelwa kwakho okuqhubekayo.
Ukongeza kokuthetha ngesicwangciso sakho sonyango, ezi ntla nganiso ziya kukunika ithuba lokujonga izinga lakho lokuthuthuzela kunye ne-oncologist nganye njengoko uya kuba yinxalenye ebalulekileyo yokhathalelo lwakho. Kufuneka uzive ukuba unokuthetha ne-oncologist yakho yezokwelapha kunye namanye amalungu eqela lakho lokukhathalela malunga naziphi na zonke iinkxalabo ezichaphazela umgangatho wobomi.
Ukujoyina iqela loxhaso lwezigulane zomhlaza zesisu se-metastatic ziza kunceda ukunciphisa ukuhlukaniswa okungathi unokuvakalelwa. Kuya kukunika ithuba lokuxelela nabanye abangakwazi ukuqonda malunga noko uhlangabezana nayo.
Ukujoyina iCandelo lamaRejista yeRegress yabasetyhini kunye namadoda ahlala nesifo sesifo se-metastatic yindlela efanelekileyo yokuxelela amava akho, izixhobo zokufikelela kunye nokufunda kwabanye ngomhlaza wesibeletho se-metastatic. Ikhululekile, iyimfihlelo, kwaye ifumaneka kunoma ubani ofunyanwe nomhlaza okanye ungumkhathaleli wesigulane somhlaza.
> Imithombo:
> I-ACCC-Launches-Initiative-to-Address-I-Communications-Inselele-Ejongene ne-Metastatic-Breast-Cancer-Patients, News Release, ngoJuni 2016
> MBC Alliance. Ukutshintsha indawo yokuhlala kubantu abaphila ngeCastral Breast Metastatic Breast Cancer. Uhlalutyo lomhlaba weCarcer Breast: INgxelo yoPhando, ngo-Oktobha 2014,
> E-Office Ethnographic Study, exhasiwe yi-Pfizer Oncology, ngo-2014