Ingaba umntwana wakho une-brain tumor engaqhelekanga efana nale? Masithethe nge-AT/RT (Atypical Teratoid/Rhabdoid Tumor)

Njengomzali, enye yezona ndaba zinzima nezibuhlungu onokuziva kukufunda ukuba umntwana wakho unomhlaza. Kuqhelekile ukuba noloyiko, uxhalabile, kwaye ube lusizi xa usiva ngomhlaza ongaqhelekanga nonzima njenge-AT/RT (i-atypical teratoid/rhabdoid tumor). Kodwa kubalulekile ukukhumbula ukuba awuwedwa kolu hambo lunzima. Iqela lezonyango lomntwana wakho linawe kuyo yonke inyathelo.

Yintoni i-AT/RT (i-Atypical Teratoid/Rhabdoid Tumor)?

Ngamafutshane, i-AT/RT luhlobo lomhlaza olukhula ngokukhawuleza kwaye luqala kwinkqubo yemithambo-luvo ephakathi (CNS). Inkqubo yethu yemithambo-luvo ephakathi yenziwe yingqondo kunye nomqolo. Ezi seli zomhlaza ziqala kwingqondo okanye kumqolo. Kwisiqingatha sabantu abane-AT/RT, iqala kwi-cerebellum okanye kwi-brainstem. Le meko ichaphazela kakhulu abantwana abancinci.

Iimpawu zinokuvela ngequbuliso. Ekuqaleni, ungacinga ukuba umntwana wakho unesifo esincinci, njengomkhuhlane oqhelekileyo. Kodwa ezi mpawu azipheli ngokuhamba kwexesha okanye ngonyango oluqhelekileyo. Kulapho ugqirha aya kuyalela khona uvavanyo lokufumanisa ukuba yintoni engalunganga ngomntwana wakho. Nje ukuba i-AT/RT ifunyaniswe, ugqirha wakho uya kuthetha nawe malunga neendlela zonyango ezilungileyo zemeko yomntwana wakho.

Inyaniso kukuba, iziphumo zolu hlobo lomhlaza azisoloko zilungile. Kuba lusasazeka ngokukhawuleza, kwaye ngamanye amaxesha kunzima ukulususa ngokupheleleyo. Ngenxa yoko, ixesha lokuphila komntwana linokufinyezwa. Nangona kunjalo, ayinguye wonke umntu onesiphumo esibi. Abaphandi bahlala bezama ukufumana unyango olutsha ukwandisa amathuba okusindisa abantwana.

Kuqhelekile ukuba nemibuzo emininzi kunye nokungaqiniseki xa ufunyaniswa ukuba unomhlaza, ingakumbi umhlaza ongaqhelekanga ofana ne-AT/RT. Kodwa khumbula, iqela lezonyango lomntwana wakho linawe kulo lonke olu hambo. Kukho inkxaso eninzi kusapho nakubanakekeli.

Loluphi uhlobo lomhlaza i-AT/RT?

I-AT/RT luhlobo olungaqhelekanga kakhulu lomhlaza wobuchopho oluchaphazela inkqubo yemithambo-luvo ephakathi (CNS), oko kukuthi, ingqondo kunye nomqolo.

Kunqabile kangakanani oku?

Uphononongo olwenziwe eMelika lufumanise ukuba ngabantu abangama-470 kuphela abaphila ne-AT/RT. Oko kuthetha ukuba ngabantu abangama-73 kuphela abafunyaniswa benesi sifo minyaka le. Okumangalisayo kukuba, kwabo bangama-73, ngabantu abadala abane kuphela. Ngoko ke ungacinga ukuba sichaphazela kangakanani na abantwana abancinci, kwaye sinqabile kangakanani na.

Zithini iimpawu ze-AT/RT?

Iimpawu ze-AT/RT zingahluka kumntu nomntu. Zixhomekeke kwizinto ezifana nobudala bomntwana kunye nendawo ekuyo ithumba. Nangona kunjalo, ezi mpawu zinokuvela ngequbuliso kwaye zibe qatha ngokukhawuleza:

• Intloko ebuhlungu:Oku kuqheleke kakhulu kusasa. Ngamanye amaxesha kuyaphela emva kokuhlanza.
• Isicaphucaphu nokuhlanza: Isicaphucaphu nokuhlanza rhoqo.
• Ukudinwa: Umntwana uziva ediniwe ngalo lonke ixesha.
• Utshintsho kwinqanaba lomsebenzi: Akubaleki kwaye adlale njengangaphambili, uzive udiniwe.
• Ubunzima bokuhamba, ukugcina ulungelelwano, kunye nokulungelelanisa: Kuvakala ngathi awulungelelani xa uhamba, kwaye kunzima ukubamba izinto.

Khawucinge nje, kangangeentsuku ezimbalwa ngoku, umntwana wakho omncinci ebevuka kusasa esithi, "Mama, intloko yam ibuhlungu," okanye ehlanza. Uyonqena kakhulu ukwenza umsebenzi wesikolo, kwaye ubonakala elele ngalo lonke ixesha. Ukuba umntwana wakho, owayeqhele ukubaleka edlala, ngoku uzama ukuhlala kwindawo enye, oko kungaba luphawu lwento efana nale.

Kwiintsana ezincinci, eli thumba lingenza intloko ibonakale inkulu kancinci. Nangona kunjalo, kubantwana abadala, lisenokungabonakali kangako.

Yintoni ebangela i-AT/RT?

Eyona nto ibangela i-AT/RT kukuguquka kwenye yezakhi zofuzo ezimbini, nokuba yi-SMARCB1 okanye i-SMARCA4. Ezi zibizwa ngokuba yi- "tumor suppressor genes." Ngamafutshane, ezi zakhi zofuzo zenza iproteni elawula isantya kunye nobukhulu beeseli emzimbeni wethu. Ngoko ke, ukuba kukho utshintsho okanye isiphene kwezi zakhi zofuzo, iiseli ziqala ukukhula ngokukhawuleza nangokungalawulekiyo. Yiyo loo nto la mathumba enziwa.

Ingaba le yinto yemfuza?

Ewe, ezinye iimeko ze-AT/RT zinokuba zezemfuza. Oku kuthetha ukuba utshintsho lwe-germline olubangela lo mhlaza lunokufunyanwa kubazali ukuya emntwaneni. Nangona kunjalo, kwiimeko ezininzi, aluzuzisi. Oku kuthetha ukuba utshintsho lunokwenzeka rhoqo emntwaneni, nokuba akukho mntu kusapho lwakhe owayekhe waba nale meko ngaphambili.

Ngubani osengozini enkulu?

I-AT/RT idla ngokuchaphazela abantwana abangaphantsi kweminyaka emi-3 ubudala. Nangona kunjalo, kubalulekile ukukhumbula ukuba inokukhula kubantwana bayo nayiphi na iminyaka, okanye kubantu abadala.

Ifunyaniswa njani i-AT/RT?

Ugqirha uxilonga i-AT/RT ngokwenza uvavanyo lomzimba, uvavanyo lwemithambo-luvo, kunye nezinye iimvavanyo ezimbalwa ezikhethekileyo. Ngexesha lovavanyo lokuqala, ugqirha uza kukubuza ngeempawu zomntwana wakho, imbali yakhe yezonyango, kunye nokuba kukho nabani na kusapho lwakho okhe waba nale meko.

Ukongeza, iimvavanyo ezenziweyo zezi:

• Iskeni ye-MRI (Magnetic Resonance Imaging): Oku kungathatha imifanekiso eneenkcukacha zobuchopho kunye nomqolo. Oku kunokunceda ekumiseleni indawo echanekileyo kunye nobukhulu bethumba.
• Ukubhoboza i-Lumbar: Oku kuquka ukuthatha isampuli encinci yolwelo olujikeleze umqolo (ulwelo lwe-cerebrospinal) uze uluvavanye ukuze ubone ukuba iiseli zomhlaza zisasazekile na.
• Uvavanyo lwemfuza:Olu vavanyo lwenziwa ukuze kubonwe ukuba kukho naluphi na utshintsho kwiijini ze-SMARCB1 okanye ze-SMARCA4 ezikhankanyiweyo ngaphambili.
• I-Biopsy: Oku kuquka ukuthatha iqhekeza elincinci lethumba uze ulihlolisise phantsi kwe-microscope ukuqinisekisa uhlobo lomhlaza.

Ziziphi iindlela zonyango ze-AT/RT?

Ugqirha womntwana wakho unokucebisa oku kulandelayo njengonyango lwe-AT/RT:

Utyando lokususa ithumba

Ugqirha wemithambo-luvo uza kuyisusa ithumba kangangoko kunokwenzeka ngotyando. Nangona kunjalo, unyango lwe-chemotherapy kunye ne-radiation lunokufuneka ukuze kutshatyalaliswe naziphi na iiseli zomhlaza eziseleyo emva kotyando.

Unyango ngamakhemikhali

Olu luhlobo lonyango olubulala iiseli zomhlaza okanye oluzithintela ukuba zingahlukani. Ngamanye amaxesha eli yeza linikwa ngomlomo okanye njengenaliti emthanjeni okanye kwimisipha (i-systemic chemotherapy). Enye indlela kukufaka iyeza ngqo kulwelo olujikeleze umqolo (i-intrathecal chemotherapy).

Unyango lweMisebe

Oku kusebenzisa ii-X-reyi ezinamandla aphezulu ukubulala iiseli zomhlaza okanye ukuzithintela ukuba zingakhuli. Umatshini uqondisa le misebe yemitha ngqo kwithumba. Abantwana abangaphantsi kweminyaka emi-3 ubudala banikwa unyango lwemitha ngemitha ephantsi kakhulu kuba lunokuchaphazela ukukhula nophuhliso lwabo.

Ukufakelwa kweeseli zeStem

Emva konyango lwe-chemotherapy oluphezulu, kwenziwa utyando lwe-stem cell ukuze kuthathelwe indawo iiseli ezilahlekileyo emzimbeni womntwana. Ngaphambi kokuba kuqalwe unyango lwe-chemotherapy, oogqirha bathatha ezinye iiseli ze-stem kumntwana baze bazigcine. Emva koko, xa unyango lwe-chemotherapy luphelile, iiseli zibuyiselwa emntwaneni ngomthambo (ngaphakathi).

Unyango olujoliswe kulo

Olu lunyango olutsha lwe-AT/RT olukwizilingo zeklinikhi okwangoku. Kule meko, amayeza athile asebenza ngokuthintela izinto ezithile ezinceda iiseli zomhlaza zikhule kwaye zahlukane.

Unyango lwe-immunotherapy

Olu lunyango olusetyenziswa ngoku kwizilingo zeklinikhi ze-AT/RT. Lusebenza ngokunceda amajoni omzimba omntwana ukuba alwe nomhlaza.

Ukhathalelo lwe-Palliative

Oku kwenzelwa ukunciphisa iimpawu zomntwana, ukunciphisa iintlungu, ukunika isiqabu, nokuphucula umgangatho wobomi bakhe.

Kubalulekile: Ugqirha uza kwenza zonke ezi mvavanyo aze agqibe ukuba loluphi unyango olulungele umntwana wakho. Ngamanye amaxesha kunokunikwa unyango olungaphezu kolunye. Kubalulekile ukuqhubeka uphantsi kweliso logqirha kwaye wenze iimvavanyo emva konyango. Le yindlela onokubona ngayo ukuba unyango luphumelele na kwaye ukuba umhlaza ubuyile.

Ngubani okwiqela lezonyango lomntwana wakho?

Ungabona oogqirha abahlukeneyo kunye nababoneleli beenkonzo zempilo xa unyanga i-AT/RT. Iqela lezonyango lomntwana wakho lingabandakanya:

• Oogqirha bezingane okanye oogqirha bosapho (oogqirha bezonyango oluphambili)
• Iingcali zotyando lwengqondo
• Iingcali zomhlaza wemitha
• Iingcali ze-Neurology
• Abacebisi ngemfuza

Ngaba kukho naziphi na iziphumo ebezingalindelekanga zonyango?

Ewe, iziphumo ebezingalindelekanga zinokwenzeka kuzo zonke iindlela zonyango lwe-AT/RT. Ugqirha womntwana wakho uza kukuchazela ukuba zeziphi ezi ziphumo ebezingalindelekanga kunye noko kufuneka ukuqaphele ngexesha lonyango. Ezinye iziphumo ebezingalindelekanga zingenzeka ngoko nangoko, ngelixa ezinye zisenokungabonakali de kube ziinyanga kamva. Ukuba unemibuzo, ungathandabuzi ukubuza ugqirha wakho.

Iyintoni iMbono/Ingqikelelo ye-AT/RT?

I-AT/RT luhlobo lomhlaza oluhlaselayo kakhulu nolusasazeka ngokukhawuleza, kwaye ukuba unyango alunyangeki ngokupheleleyo, ubomi bomntwana bunokuphela ngokukhawuleza. Nangona kunjalo, oku kuyahluka kakhulu kumntu nomntu. Umzekelo, ukuba ithumba linokususwa ngokupheleleyo ngotyando, kukho ithuba lokunyangwa.

Imbonakalo ixhomekeke kwizinto ezininzi:

• Ubudala bomntwana wakho.
• Ilifa lemfuza.
• Ingasuswa njani ngokukhuselekileyo ithumba ngotyando?
• Ingaba umhlaza usasazeke na kwezinye iindawo zomzimba.

Ngugqirha wakho kuphela onokukunika ulwazi oluchanekileyo malunga noqikelelo lomntwana wakho. Ukuba unemibuzo, thetha neqela lezonyango lomntwana wakho.

Ingakanani izinga lokusinda kunye nokuphiliswa kwe-AT/RT?

Ngenxa yokuba i-AT/RT luhlobo lomhlaza olungaqhelekanga, akukho datha yaneleyo yokuqikelela ngokuchanekileyo amazinga okusinda kunye nokunyangwa kwesi sifo. Ugqirha womntwana wakho uya kukwazi ukukunika ulwazi lwamva nje malunga nemeko yomntwana wakho.

Ngaba i-AT/RT ingathintelwa?

Ngelishwa, okwangoku akukho ndlela yokuthintela i-AT/RT. Ukuba unethemba lokuba nomnye umntwana, kungaba ngumbono olungileyo ukuthetha nomcebisi wezemfuza ukuze ufumane ukuba wena okanye iqabane lakho ninotshintsho lwezemfuza olunokubangela i-AT/RT kunye nomngcipheko wokuba umntwana wakho ayifumane njengelifa.

Yeyiphi imibuzo omele uyibuze ugqirha womntwana wakho?

Kuqhelekile ukuba nemibuzo emininzi engqondweni yakho emva kokufunda nge-AT/RT. Qiniseka ukuba ubuza ugqirha womntwana wakho le mibuzo:

• Iphi ithumba emzimbeni womntwana wam?
• Luhlobo luni lonyango olucetyiswayo?
• Ngaba kukho naziphi na iziphumo ebezingalindelekanga zonyango?
• Ngaba unyango luza kuchaphazela ukukhula nophuhliso lomntwana wam?
• Ithini ingqikelelo yomntwana wam?

Okokugqibela, eyona nto ibalulekileyo (Umyalezo Wokuya Ekhaya)

"Umntwana wakho unomhlaza." La ngamanye amazwi anzima umzali anokuwava. Usenokuba nexhala malunga nokuba kuza kwenzeka ntoni emva koko, malunga nekamva lomntwana wakho. Nangona kukho ukungaqiniseki okuninzi okuza nomhlaza, khumbula ukuba iqela lezonyango lomntwana wakho linawe kuyo yonke inyathelo. Baza kukunceda uhambe kunyango, ulawule iimpawu, kwaye unyamekele umntwana wakho ubomi bakhe bonke. Uphando luyaqhubeka nokufunda okungakumbi malunga ne-AT/RT (i-atypical teratoid/rhabdoid tumor) kwaye ufumane iindlela ezintsha zokuyinyanga. Ngoko ke, ungaze ulahle ithemba.

` I-AT/RT, umhlaza wobuchopho, umhlaza wobuntwana, iimpawu zomhlaza, unyango lomhlaza, utshintsho lwemfuza, inkqubo yemithambo-luvo