Ingabe ingane yakho inesimila sobuchopho esingavamile njengalesi? Ake sixoxe nge-AT/RT (Atypical Teratoid/Rhabdoid Tumor)

Njengomzali, enye yezindaba ezinzima kakhulu nezibuhlungu kakhulu ongazizwa ukufunda ukuthi ingane yakho inomdlavuza. Kuvamile ukuzizwa wesaba, ukhathazekile, futhi udabukile uma uzwa ngomdlavuza ongavamile, ongathi sína njenge-AT/RT (isimila esingajwayelekile se-teratoid/rhabdoid). Kodwa kubalulekile ukukhumbula ukuthi awuwedwa kulolu hambo olunzima. Ithimba lezokwelapha lengane yakho linawe kuzo zonke izinyathelo zendlela.

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

Kalula nje, i-AT/RT uhlobo lomdlavuza olukhula ngokushesha kakhulu futhi luqale ohlelweni lwezinzwa oluphakathi (CNS). Uhlelo lwethu lwezinzwa oluphakathi lwakhiwe ubuchopho kanye nomgogodla. Lawa maseli omdlavuza aqala ebuchosheni noma emgogodleni. Cishe engxenyeni yabantu abane-AT/RT, iqala ku-cerebellum noma ku-brainstem. Lesi simo sithinta kakhulu izingane ezincane.

Izimpawu zingavela ngokuzumayo. Ekuqaleni, ungase ucabange ukuthi ingane yakho inesifo esincane, njengomkhuhlane ovamile. Kodwa lezi zimpawu azipheli ngokuhamba kwesikhathi noma ngokwelashwa okuvamile. Yilapho udokotela eyoyala khona ukuhlolwa ukuze athole ukuthi yini engalungile ngempela ngengane yakho. Uma i-AT/RT isitholakele, udokotela wakho uzokhuluma nawe ngezinketho zokwelapha ezingcono kakhulu zesimo sengane yakho.

Uma ngikhuluma iqiniso, imiphumela yalolu hlobo lomdlavuza ivame ukungabi mihle kakhulu. Ngoba isakazeka ngokushesha kakhulu, futhi ngezinye izikhathi kunzima ukuyisusa ngokuphelele. Ngakho-ke, isikhathi sokuphila kwengane singafinyezwa. Kodwa-ke, akuwona wonke umuntu othola umphumela omubi. Abacwaningi bahlala bezama ukuthola izindlela ezintsha zokwelapha ukwandisa amathuba okusindisa izingane.

Kuvamile ukuzizwa unemibuzo eminingi nokungaqiniseki lapho utholakala unomdlavuza, ikakhulukazi umdlavuza ongavamile njenge-AT/RT. Kodwa khumbula, ithimba lezokwelapha lengane yakho linawe kulo lonke lolu hambo. Kunokusekelwa okuningi komndeni nabanakekeli.

Uhlobo luni lomdlavuza i-AT/RT?

I-AT/RT uhlobo olungavamile kakhulu lomdlavuza wobuchopho oluthinta uhlelo lwezinzwa oluphakathi (i-CNS), okungukuthi, ubuchopho kanye nomgogodla.

Kungavamile kangakanani lokhu?

Ucwaningo olwenziwe e-United States luthole ukuthi abantu abangu-470 kuphela abaphila ne-AT/RT. Lokho kusho ukuthi cishe abantu abangu-73 kuphela abatholakala benalesi simo minyaka yonke. Ngokumangalisayo, kulabo abangu-73, abane kuphela abadala. Ngakho ungacabanga ukuthi kuthinta kangakanani izingane ezincane, nokuthi kungavamile kangakanani.

Ziyini izimpawu ze-AT/RT?

Izimpawu ze-AT/RT zingahluka kumuntu nomuntu. Ziya ngezici ezifana nobudala bengane kanye nendawo lapho isimila sikhona. Kodwa-ke, lezi zimpawu zingavela ngokuzumayo futhi zibe zimbi ngokushesha:

• Ikhanda elibuhlungu:Lokhu kuvame kakhulu ekuseni. Ngezinye izikhathi kuyaphela ngemva kokuhlanza.
• Isicanucanu nokuhlanza: Isicanucanu nokuhlanza okuvamile.
• Ukukhathala: Ingane izizwa ikhathele ngaso sonke isikhathi.
• Izinguquko ezingeni lomsebenzi: Ukungagijimi nokudlala njengakuqala, ukuzizwa ukhathele.
• Ubunzima bokuhamba, ukugcina ibhalansi, kanye nokuxhumana: Kuzwakala sengathi awulingani kahle lapho uhamba, futhi kunzima ukubamba izinto.

Cabanga nje, sekuphele izinsuku ezimbalwa manje, ingane yakho encane ivuka ekuseni ithi, "Mama, ikhanda lami liyabuhlungu," noma ihlanza. Ivilapha kakhulu ukwenza umsebenzi wesikole, futhi ibonakala ilele ngaso sonke isikhathi. Uma ingane yakho, eyayivame ukugijima idlale, manje izama ukuhlala endaweni eyodwa, lokho kungaba uphawu lwento efana nale.

Ezinganeni ezincane, lesi simila singenza ikhanda libonakale likhulu kancane. Kodwa-ke, ezinganeni ezindala, kungase kungabi sobala kangako.

Yini ebangela i-AT/RT?

Imbangela eyinhloko ye-AT/RT ukuguquka kwesinye sezakhi zofuzo ezimbili, kungaba yi-SMARCB1 noma i-SMARCA4. Lezi zibizwa ngokuthi "izakhi zofuzo ezicindezela ithumba." Kalula nje, lezi zakhi zofuzo zakha iphrotheni elawula ijubane nobukhulu bamaseli emzimbeni wethu. Ngakho-ke, uma kukhona ushintsho noma iphutha kulezi zakhi zofuzo, amaseli aqala ukukhula ngokushesha nangokungalawuleki. Yingakho la mathumba akheka.

Ingabe lokhu kuyindaba yofuzo?

Yebo, ezinye izimo ze-AT/RT zingaba yizakhi zofuzo. Lokhu kusho ukuthi ukuguquka kwe-germline okubangela lo mdlavuza kungadluliselwa kubazali kuya enganeni. Kodwa-ke, ezimweni eziningi, akulona ufuzo. Lokhu kusho ukuthi ukuguquka kungenzeka ngezikhathi ezithile enganeni, noma ngabe akekho emndenini oke waba nalesi simo ngaphambili.

Ubani osengozini enkulu?

I-AT/RT ivame ukuthinta izingane ezingaphansi kweminyaka emi-3. Kodwa-ke, kubalulekile ukukhumbula ukuthi ingakhula ezinganeni zanoma yimuphi ubudala, noma kubantu abadala.

I-AT/RT ihlolwa kanjani?

Udokotela uxilonga i-AT/RT ngokwenza ukuhlolwa ngokomzimba, ukuhlolwa kwezinzwa, kanye nezinye izivivinyo ezimbalwa ezikhethekile. Phakathi nalezi zivivinyo zokuqala, udokotela uzokubuza ngezimpawu zengane yakho, umlando wezokwelapha odlule, nokuthi ngabe kukhona yini emndenini wakho oke waba nalesi simo.

Ngaphezu kwalokho, izivivinyo ezenziwe yilezi:

• Iskena se-MRI (Magnetic Resonance Imaging): Lokhu kungathatha izithombe ezinemininingwane zobuchopho kanye nomgogodla. Lokhu kungasiza ekutholeni indawo eqondile kanye nosayizi wesimila.
• Ukubhoboza i-Lumbar: Lokhu kuhilela ukuthatha isampula encane yoketshezi oluzungeze umgogodla (uketshezi lwe-cerebrospinal) bese uluhlola ukuze ubone ukuthi amangqamuzana omdlavuza asasakazekile yini.
• Ukuhlolwa kofuzo:Lokhu kuhlolwa kwenziwa ukuze kubonakale ukuthi kukhona yini izinguquko ezizakhi zofuzo ze-SMARCB1 noma ze-SMARCA4 okukhulunywe ngazo ngaphambilini.
• I-Biopsy: Lokhu kuhilela ukuthatha ingxenye encane yesimila bese uyihlola ngaphansi kwesibonakhulu ukuqinisekisa uhlobo lomdlavuza.

Yiziphi izindlela zokwelapha i-AT/RT?

Udokotela wengane yakho angase asikisele okulandelayo njengokwelashwa kwe-AT/RT:

Ukuhlinzwa kokususa isimila

Udokotela ohlinzayo wezinzwa uzosusa isimila ngangokunokwenzeka ngokuhlinzwa. Kodwa-ke, ukwelashwa ngamakhemikhali kanye nemisebe kungadingeka futhi ukuze kubhujiswe noma yimaphi amangqamuzana omdlavuza asele ngemva kokuhlinzwa.

Ukwelashwa ngamakhemikhali

Lolu uhlobo lomuthi olubulala amangqamuzana omdlavuza noma oluwavimba ukuthi angahlukani. Ngezinye izikhathi lomuthi unikezwa ngomlomo noma njengomjovo emthanjeni noma emisipheni (i-systemic chemotherapy). Enye indlela ukufaka umuthi ngqo oketshezini oluzungeze umgogodla (i-intrathecal chemotherapy).

Ukwelashwa Ngemisebe

Lokhu kusebenzisa ama-X-ray anamandla amakhulu ukubulala amangqamuzana omdlavuza noma ukuwavimba ekukhuleni kwawo. Umshini uqondisa le misebe yemisebe ngqo esimila. Izingane ezingaphansi kweminyaka emi-3 ubudala zinikezwa ukwelashwa ngemisebe ngemithamo ephansi kakhulu ngoba kungathinta ukukhula kwazo kanye nentuthuko yazo.

Ukufakelwa Kwamaseli Esiqu

Ngemva kokwelashwa ngamakhemikhali aphezulu, kwenziwa ukufakelwa kweseli eliyisisekelo ukuze kufakwe amaseli alahlekile emzimbeni wengane. Ngaphambi kokuba kuqale ukwelashwa ngamakhemikhali, odokotela bathatha amanye amaseli okuqala enganeni bawagcine. Ngemuva kwalokho, lapho ukwelashwa ngamakhemikhali sekuphelile, amaseli abuyiselwa enganeni ngomthambo (ngomjovo).

Ukwelashwa Okuqondiwe

Lokhu kuyindlela entsha yokwelapha i-AT/RT esezivivinyweni zemitholampilo okwamanje. Kulokhu, imithi ethile isebenza ngokuvimba izinto ezithile ezisiza amangqamuzana omdlavuza ukuba akhule futhi ahlukane.

Ukwelashwa nge-immunotherapy

Lokhu futhi kuyindlela yokwelapha esezivivinyweni zezokwelapha ze-AT/RT okwamanje. Kusebenza ngokusiza amasosha omzimba engane ukuthi alwe nomdlavuza.

Ukunakekelwa Kwe-Palliative

Lokhu kwenzelwa ukunciphisa izimpawu zengane, ukunciphisa ubuhlungu, ukunikeza impumuzo, nokuthuthukisa ikhwalithi yempilo yayo.

Okubalulekile: Udokotela uzokwenza zonke lezi zivivinyo bese enquma ukuthi yikuphi ukwelashwa okungcono kakhulu enganeni yakho. Ngezinye izikhathi ukwelashwa okungaphezu kokukodwa kunganikezwa. Kubalulekile ukuqhubeka uqashwe udokotela futhi uhlolwe ngemva kokwelashwa. Lena yindlela ongabona ngayo ukuthi ukwelashwa kuphumelele yini nokuthi umdlavuza ubuyile yini.

Ubani oseqenjini lezokwelapha lengane yakho?

Ungabona odokotela abahlukahlukene kanye nabahlinzeki bezempilo lapho welapha i-AT/RT. Ithimba lezokwelapha lengane yakho lingafaka:

• Odokotela bezingane noma odokotela bomndeni (Odokotela bezingane abayinhloko)
• Odokotela abahlinza izinzwa
• Odokotela be-radiation oncologists
• Odokotela bezinzwa
• Abeluleki bezofuzo

Ingabe ikhona imiphumela emibi yokwelashwa?

Yebo, imiphumela emibi ingenzeka kuzo zonke izindlela zokwelapha ze-AT/RT. Udokotela wengane yakho uzokuchazela ukuthi iyini le miphumela emibi nokuthi yini okufanele uyiqaphele ngesikhathi sokwelashwa. Eminye imiphumela emibi ingase ivele ngokushesha, kanti eminye ingase ingabonakali kuze kube ngemva kwezinyanga ezimbalwa. Uma unemibuzo, ungangabazi ukubuza udokotela wakho.

Iyini i-Outlook/Prognosis ye-AT/RT?

I-AT/RT uhlobo lomdlavuza olunamandla kakhulu nolusakazeka ngokushesha, futhi uma ukwelashwa kungelapheki ngokuphelele, impilo yengane ingaphela ngokushesha. Kodwa-ke, lokhu kuyahlukahluka kakhulu kumuntu nomuntu. Isibonelo, uma isimila singasuswa ngokuphelele ngokuhlinzwa, kunethuba lokwelashwa.

Umbono unqunywa yizici eziningana:

• Ubudala bengane yakho.
• Ifa lezakhi zofuzo.
• Ingasuswa kanjani ithumba ngokuphepha ngokuhlinzwa?
• Ukuthi umdlavuza ususakazekele yini kwezinye izingxenye zomzimba.

Udokotela wakho kuphela ongakunikeza ulwazi olunembile kakhulu mayelana nokubikezela kwengane yakho. Uma unemibuzo, khuluma nethimba lezokwelapha lengane yakho.

Lingakanani izinga lokusinda kanye nokwelashwa kwe-AT/RT?

Ngenxa yokuthi i-AT/RT uhlobo lomdlavuza olungavamile, ayikho idatha eyanele yokubikezela ngokunembile amazinga okusinda kanye nokwelashwa kwalesi simo. Udokotela wengane yakho uzokwazi ukukunikeza ulwazi lwakamuva mayelana nesimo sengane yakho.

Ingabe i-AT/RT ingavinjelwa?

Ngeshwa, okwamanje ayikho indlela yokuvimbela i-AT/RT. Uma unethemba lokuba nomunye umntwana, kungaba ngumqondo omuhle ukukhuluma nomeluleki wezakhi zofuzo ukuze uthole ukuthi wena noma umlingani wakho nine-genetic mutation engabangela i-AT/RT nokuthi iyini ingozi yokuthi ingane yakho iyithole njengefa.

Yimiphi imibuzo okufanele uyibuze udokotela wengane yakho?

Kuvamile ukuba nemibuzo eminingi engqondweni yakho ngemva kokufunda nge-AT/RT. Qiniseka ukuthi ubuza udokotela wengane yakho le mibuzo:

• Ikuphi ithumba emzimbeni wengane yami?
• Hlobo luni lokwelashwa olunconywayo?
• Ingabe ikhona imiphumela emibi yokwelashwa?
• Ingabe ukwelashwa kuzothinta ukukhula nokukhula kwengane yami?
• Kuyini ukubikezela kwengane yami?

Okokugcina, into ebaluleke kakhulu (Umyalezo Wokuya Ekhaya)

"Ingane yakho inomdlavuza." Lawa amanye amazwi anzima kakhulu umzali angawezwa. Ungase ukhathazeke ngokuthi kuzokwenzekani ngokulandelayo, ngekusasa lengane yakho. Nakuba kunezinto eziningi ezingaqiniseki ezihambisana nomdlavuza, khumbula ukuthi ithimba lezokwelapha lengane yakho linawe kuzo zonke izinyathelo zendlela. Bazokusiza ukuthi ubhekane nokwelashwa, uphathe izimpawu, futhi unakekele ingane yakho kukho konke ukuphila kwayo. Ucwaningo luyaqhubeka nokufunda kabanzi nge-AT/RT (isimila esingajwayelekile se-teratoid/rhabdoid) futhi uthole izindlela ezintsha zokuselapha. Ngakho-ke, ungalokothi ulahle ithemba.

` I-AT/RT, umdlavuza wobuchopho, umdlavuza wobuntwana, izimpawu zomdlavuza, ukwelashwa komdlavuza, izinguquko zofuzo, uhlelo lwezinzwa