Sangano reMunharaunda yeCancer Centers (ACCC) Chirongwa cheMastastatic Breast Cancer chirongwa chekudzidzisa chinotarisana nezvinodiwa zvekutaurirana uye nyaya dzevakadzi nevarume vanogara nekenza yepamusoro yepabonde. Icho chinangwa chekutanga chekuita izvi chiri kuwedzera kurapwa uye kutungamirirwa kwekenza yepamusoro yepabonde mumagariro evanhu. Avon Breast Cancer Crusade, Cancer Support Community, uye Metastatic Breast Cancer Alliance iri kugoverana unyanzvi hwavo nehutano seAACC vashandi mune izvi, nekubhadhara mari uye rubatsiro runopiwa nePfizer Oncology.
"ACCC Metastatic Breast Cancer Project inotaura zvakananga nezvido zvinoonekwa sechikamu cheChirwere cheBabonde redu : A Story Half Told chiito -chido chekuita hurukuro dzinobatsira pakati pechiremba nevarwere vane kenza yepamusana," akadaro Julia Perkins Smith, MD, North America Medical Medical Lead, Pfizer Oncology. "Pfizer yakanyatsozvipira kubatsira kusangana nezvinhu zvakasiyana-siyana zvevanhu veMDC, uye isu tinofara kutsigira basa idzva ACCC iri kuita munzvimbo ino.Kana ACCC, tariro yedu ndeyokuti basa iri richaita kuti varwere vane MBC vawane zviri nani kunzwisisa kwechirwere chavo uye vane izwi rakasimba mukugadzirisa kwavo kurapa. "
Kukurukurirana Matambudziko
Kune varwere: Kuongororwa kwekenza yemasasa inokonzera mazamu kune nyaya dzese dzekutaurirana; inowanzosanzwisiswa. Dzimwe nguva, kunyange varwere vanoomerwa nokunzwisisa apo avo oncologist vanotaura navo pamusoro pezvirwere zvavo zvemasastatic, chido chekurarama kwenguva refu, vanotarisira migumisiro, uye kuti chirwere chavo chichaita sei pauhupenyu hwavo uye tarisiro yehupenyu.
Pakutanga, varwere vazhinji vanovhiringidzika nekuongorora kwavo uye zvavari kuudzwa; ivo vanozeza kubvunza mibvunzo. Kunyange apo varwere vanoramba vari mukurapa, vamwe varwere havatauri kutya kwavo nhengo dzeboka ravo rekutarisira kana kukumbira rubatsiro rwemweya rwavanoda. Vanowanzovhara kukurukurirana kwavo nevanachiremba oncologist pakugadzirisa migumisiro, pamwe nekubudirira kwehuwandu hwekurapa ikozvino.
Maererano neshumo rekuongorora muInternet rinotungamirirwa neCancer Support Community, ruzhinji rwevarwere vekenza yemasasa rinotaura nezvekukurukurirana kwakanaka neboka ravo rekutarisira utano. Asi vaviri pavashanu varwere vakati havana kutaurirana zvinetso zvakadzama pamusoro pehutano hwavo hwepfungwa, kurapwa, zviratidzo, uye hupenyu hwehupenyu.
"Ruzivo rwomunhu mumwe nomumwe nezvekenza yepamusoro yepamuviri ndiyo inonyanya kukosha kuti uwane ruzivo rwekuita kurapwa kwekutora. Ruzivo runoitawo basa rinokosha rehupenyu mukuderedza kusava nechokwadi, kusava nekudzivirira uye kutambudzika. Asi, varwere vakawanda havawani ruzivo rwakakwana kubva kumapoka avo ezvehutano; kunzwisisa kwavo nezvehutano hwechirwere uye zvinangwa zvekurapa zvinowanzoshata; vazhinji vanotenda kuti vacharapwa. Kukanganisa kwemazuva uye zvigadziro muhutano hwemaitiro ehutachiona hunogona kukonzera varwere-varwere kukurukurirana, kusanganisira nzira imwe chete "chiremba-anoziva-nani" kutaurirana. Varwere vanotaura zvakare kuvhiringidzika pamusoro pezvinyorwa zvinovimbika zvemashoko. "Yakashuma Katherine Crawford-Grey, Mutungamiriri weMetastatic Breast Cancer Alliance.
Kune vanhu vose: Kunyange zvazvo kune vanhu vakawanda vanoziva nezvekenza yebonde semugumisiro wemashoko ari kuonekwa paTV nemavhidhiyo, uye mune zvinyorwa zvinyorwa, mashoko aya anowanzotarisa pachirwere chepakutanga chepabonde , kwete Chikamu IV, kenza yemazamu ematenda.
Asi, kuongororwa kuisa nhamba yevarwere vanorarama nechirwere chemasastatic pakati pe 150,000 ne 250,000 muUnited States Gore roga roga, 40 000 varwere vematenda vanofa nehosha. Inenge 6-10 kubva muzana yevana vese vachangobva kuongororwa nekenza yemazamu inonzi metastatic. Pakati pe20-30 kubva muzana yevamwe mazamu echepiti achava nemastatic, zvichiitika 5, 10, 15+ makore achatevera kurapwa kwekenza yepabonde kare.
Chirwere chemetastatic chepamuti ndicho chikamu chepamusoro zvikuru chekenza yebonde, ine kenza yakapararira mberi kwechifu kune nhengo dziri kure zvakadai semapapu, chiropa, uropi uye bone. Kunyange zvazvo ichirapa, haisi kupora.
Iyo haina kukodzera ne "kunzwa zvakanaka" nezvemashoko ekurarama nekenza yebonde inowanzotaurwa kune terevhizheni, redhiyo uye mumutsara.
Zvichipa kuti varwere vanoita zvirwere vanogara mune tsika umo kuchengetedza kunofungidzirwa sechiitiko chinowanzoitika mushure mekupedzisa kurapwa, vazhinji vane chirwere chemasastatic vanonzwa sevari kunze mukati memukati wekenza yemazamu. Vanowanzobvunzwa nemhuri nemhuri neshamwari kuti vatsanangure kuti nei vachifanira kuva mukurapa kwehupenyu hwavo hwose.
Maererano neMetastatic Breast Cancer (MBC) Alliance, mharidzo yevanhu pamusoro pekenza yemazamu 'kurapa' uye kuponesa kwakazara zvokuti vanhu vanorwara muChechi IV vane chirwere chemazamu chemastasti vanogona kushorwa nekunzwisisa kuti vakundikana kutarisira ivo pachavo kana kuongororwa kwegore negore.
Kuratidzwa kweMatastatic Breast Cancer Project
Marianne Gandee, Mutevedzeri Mutevedzeri, Mupi weZvikoro, ACCC, anorondedzera Project sekuti, "Purogiramu yedu yepamusoro yeChristmas Breast inoshusha kupa simba kuvarwere veMC kuburikidza kupa vashandi vavo vezvigadzirwa zvehutano zvishandiso uye zvigadziro kugadzirisa zvipfeko mukutarisira nekuvandudza kukurukurirana pakati pevarwere nevatapi. "
Iyo Project ichapa:
- Site inoshanyira zvivako zvine mapurogiramu anoratidza maitiro anobudirira mukurapa uye kurwara kwehutano.
- Kugoverana kwemashoko maererano nehuwandu huno huri hwehutano hwekenza yepamusoro uye hutano hwehutano.
- Peji yewebhu uye app
- Dzidzo yezvidzidzo zvakakodzera kushandiswa nevose vese veboka rekuchengetedza kenza.
- Bhuku rebasa pamusoro pekuita maitiro ekuchengetedza varwere vemazamu echechi yepamusoro.
- Kusvikirwa neCancer Support Community's Cancer Experience Registry: Metastatic Breast Cancer.
- Muna 2007, kukurudzirwa kwezvirongwa zvekushandisa kubatsira zvikamu zveAACC zvinowedzera kurapwa uye kutungamirirwa kwevakadzi nevarume vane kenza yepamusasa yepabonde.
Sangano reMunharaunda yeCancer Centers, sangano rekukurudzira uye sangano rekudzidzisa kubva muna 1974, ndiro musangano wekugadzirisa nyaya dzinobatsira zvirongwa zvekenza yemunharaunda munyika yose. Sezvo zvakadaro, ACCC inogona kushandisa zvayo uye yevashandi varo muMetastatic Breast Cancer Project kuti vasvike uye vabatsire nhengo dzayo mukugadzirisa zvinotarisirwa zvinotarisirwa nevarwere vane kenza yepamusasa yemasasa. Nhengo dzinosanganisira vanopfuura 22 000 vanochengetedza kenza kubva kune zvipatara 2 000 uye maitiro munyika yose. Community oncologists vanobata vanopfuura 75 muzana yekenza varwere.
ACCC Mutungamiri Jennie R. Crews, MD, MMM, FACP vakati, "Sezvatinoedza kurwira munhu wega, kutaridzika kwepamusoro-soro, tinofanira kupa varwere kuti vabatanidze zvizere mukutaurirana nemaviri nevatapi vavo." Chirongwa cheMastastatic Breast Cancer Project yakagadzirirwa kuita izvo chete nekuwedzera kamuti yekenza yenguva ino yemazamu kugadzirisa matanho ekukurukurirana pakati pepakutanga uye zvirwere zvechirwere; uye kuvandudza kutaurirana pamusoro pekurapa uye kutungamirirwa kwekenza yepamusoro yepamuviri munharaunda yemascology.
Vabatsiri Mabasa muMetastatic Breast Cancer Project
"Avon Breast Cancer Crusade ndeye vanozvikudza kuti vabatsire kupenya chiedza chakajeka pane zvinodiwa zvakasiyana-siyana zvevarwere veMMC nemhuri dzavo uye kufambisa mberi kwehutano hwemagariro echepamu rezamu kuti zvive nani kuti zvizadzise zvido izvi, "akadaro Carolyn Ricci, Mutungamiriri wePurogiramu, Avon Breast Cancer Crusade.
"Chirwere cheMetastatic Breast Cancer Alliance chinotenda kuti ushamwari, hwakadai sehwo hwatinahwo neChishanu yeCancer Centers Project nokuda kweMastastatic Breast Cancer Project, inokosha kana tichizochinja humwe hutano hunoita kuti tive nekuvandudza hutano uye huwandu hwehupenyu hwe vanhu vanorarama nekenza yemasitamende. Basa redu mukushanda neAACC nderekuunza hutano hwemitezo edu mukutsvakurudza uye kubudirira kwezvirongwa. Chimwe chezvibatsiro zveAlliance ndeyekuti tichazonzwisisa zviri nani zvido zvekukurukurirana zvemakiriniki evanhu vemunharaunda uye, tariro, kuti tive nekukwanisa kuita zvakanyanya mukushanda pamwe nenzvimbo kuti tiwane zvido izvi.
IAlliance yakagadza Dr. Corrine Ellsworth Beaumont kuti aongorore zvipingamupinyi zvekukurukurirana izvo zviripo uye ape nzira itsva dzekutarisana nazvo. Somugumisiro weChikamu cheChimwe chekutsvakurudza uku, tiri kuongorora imwe Shanduro Tool Kit inotarisana nezvinoonekwa nekugadzirisa zvinyorwa. Kubatana kwedu neCACC muMastastatic Breast Cancer Project inobatsira kuti hutungamiri hwavo huve neruzivo uye ruzivo rwezvinhu izvi zvitsva, "akadaro Katherine Crawford-Gray, Mutungamiriri weMetastatic Breast Cancer Alliance.
ICancer Support Community's Cancer Experience Registry, iyo yega registry yeerudzi rwayo, inobvumira varwere nevatarisi kuti vagovere zviitiko zvavo zvakasiyana-siyana kuti vabatsire kuvandudza hupenyu hwevanhu vanorarama nekenza kuongorora. Chikamu chinokosha cheRegridzi chinotsvakirwa kuti uchinzwisise zvinodiwa zvehutano uye zvepfungwa zvevanhu vanogara nekenza yepamusoro yepabonde. Mashoko anotsvaga kubva kuRejistory achapa vashandi pamwe nekucheka-tsika maitiro anotarisana nematambudziko anokonzerwa nekenza yematenda emuviri. Izvi zvichange zvichitibatsira mukuvandudzirwa kwezvinhu zvakagadziriswa uye zvishandiso uye kubatsira kubatsira mberi kwekuchengetedzwa kwevarwere, "akadaro Joanne Buzaglo, PhD, Senior Vice President, Research and Training Institute yeCancer Support Community.
Shoko Rinobva
Kana uine kenza yemasasa, unoda uye unofanirwa neboka rekuchengetedza kenza iyo yakasununguka kupindura mibvunzo yako uye inotora nguva yekuteerera manzwiro ako. Kana iwe uchangobva kuongororwa, kunze kwekuti iwe uine ukama hunogutsa newe oncologist uyo akakwanisa kurapwa kwako kune kenza yepamberi kare, iwe uchada kuwana chiremba wezvokurapa. Icho chirevo chakanaka chokusangana neveviri kana kupfuura pane oncologists musati musarudza ndiani achaita basa rako rekuchengeta.
Mukuwedzera pakutaura pamusoro peurongwa hwehutano hwako, misangano iyi ichakupa mukana wekutsvaga kunyaradza kwako pamwe newesecologist sezvaanenge ari chikamu chinokosha chekutarisira kwako. Iwe unofanirwa kunzwa kuti iwe unogona kutaura newachiremba wako oncologist nedzimwe nhengo dzeboka rako rekutarisira pamusoro peizvi uye zvese zvinonetsa izvo zvinokonzera pauhu hwehupenyu hwako.
Kubatana neboka rinotsigira revarwere vekenza yemasasa kunobatsira kuderedza kusarura iwe unganzwa. Ichakupai mukana wekutaurirana nevamwe vanogona kufanana nezvamuri kutambura.
Kubatana neCcercer Experience Registry chikamu chevakadzi nevarume vanogara nehutachiona hwepabonde inzira yakanaka yekugovana zviitiko zvenyu, kuwana ruzivo, uye kudzidza kubva kune vamwe vane kenza yepamusoro yepabonde. Registry is community online. Izvo zviri pachena, zvakavanzika, uye zvinowanikwa kune ani zvake akave akaonekwa ane kenza kana ari mutarisiri wegwere rekenza.
> Sources:
> ACCC-Launches-Initiative-ku-Address-Communications-Matambudziko-Kutarisana-Metastatic-Breast-Cancer-Patients, News Release, June 2016
> MBC Alliance. Kuchinja Mamiriro Evanhu Vaya Vanorarama neAtastatic Breast Cancer. Metastatic Breast Cancer Mamiriro ekuongorora: Research Report, October 2014,
> In-Office Ethnographic Study, yakatsigirwa nePfizer Oncology, 2014