I fa hian hetiang thluaka tumor danglam tak hi a nei em? AT/RT (Atypical Teratoid/Rhabdoid Tumor) chungchang hi han sawi ila

Nu leh pa i nih angin chanchin harsa leh lungchhiatthlak ber pakhat i hriat chu i fain cancer a vei tih i hriat hi a ni. AT/RT (atypical teratoid/rhabdoid tumor) ang chi cancer hlauhawm tak, hlauhawm tak i hriat hian hlauhna, lungngaihna leh lungngaihna pawh hi thil pangngai a ni. Mahse, he zinkawng harsa takah hian nangmah chauh i ni lo tih hriat reng a pawimawh. I fa medical team te chu i kalna apiangah an awmpui reng a ni.

AT/RT (Atypical Teratoid/Rhabdoid Tumor) hi eng nge ni?

A awlsam zawngin AT/RT hi cancer chi khat a ni a, a thang chak hle a, central nervous system (CNS) atanga intan a ni. Kan central nervous system hi thluak leh ruhro atanga siam a ni. Heng cancer cell te hi thluak emaw, ruhro emaw atanga tan a ni. AT/RT vei zinga a chanve vel ah chuan cerebellum emaw brainstem emaw atanga tan a ni. Hetiang dinhmun hian naupang tê tête a nghawng tam ber.

Symptoms a lo lang nghal thei. A tirah chuan i fa hian natna tenau tak, khawsik pangngai ang chi a nei niin i ngai mai thei. Mahse heng symptoms te hi hun kal zelah emaw, enkawl dan pangngai emaw chuan a reh lo. Chutih hunah chuan doctor chuan i fa chunga thil dik lo tak tak hriat tumin test a order ang. AT/RT hmuhchhuah a nih veleh i doctor chuan i fa dinhmun enkawlna tha ber berte a sawipui ang che.

Dik tak chuan he cancer chi hi a rah chhuah hi a tha vak lo fo thin. A chhan chu a darh chak em em a, a chang chuan paih kim vek a harsa thin. Chuvang chuan naupang dam rei zawng hi a tawi thei a ni. Mahse, mi zawng zawng hian result tha lo kan nei vek lo. Zirchiangtute chuan naupang chhanchhuahna chance tihpun nan enkawlna thar zawng an tum fo thin.

Cancer i vei tih hmuhchhuah a nih hian zawhna leh rinhlelhna tam tak i neih hi thil pangngai a ni a, a bik takin AT/RT ang cancer hmuh tur awm lo tak hi a ni. Mahse, he zinkawng chhung zawng hian i fa medical team te chu i hnenah an awm reng tih hre reng ang che. Chhungkaw leh enkawltu tanpuina a tam hle.

AT/RT hi eng cancer chi nge ni?

AT/RT hi thluak cancer chi khat, a tlem hle a, central nervous system (CNS), chu chu thluak leh ruhro (spinal cord) a nghawng a ni.

Hei hi engtiang chiahin nge a tlem?

United States-a zirchianna pakhatah chuan mi 470 chauh AT/RT neiin an khawsa tih hmuhchhuah a ni. Chumi awmzia chu kum tin mi 73 vel chauhvin he natna hi an vei tih hmuhchhuah a ni tihna a ni. Mak tak maiin, chu mi 73 zingah chuan mi 4 chauh chu puitling an ni. Chuvangin naupang tête a nghawng nasa zâwk tih i ngaihtuah thei a, a tlemzia pawh i ngaihtuah thei bawk.

AT/RT natna lan chhuah dan chu engte nge ni?

AT/RT natna lan chhuah dan hi mi hrang hrangah a inang lo thei. Naupang kum leh tumor awmna hmun ang chi thil hrang hrangah an innghat a ni. Mahse, heng symptoms te hi a lo lang nghal thei a, a na nghal vat thei bawk:

• Lu na:Hei hi zing lamah a tam hle. A chang chuan luak chhuah hnuah a reh thin.
• Nausea leh vomiting: Nausea leh luak chhuak fo thin.
• Chauhna: Naupang chu a chau hle tih a hria.
• Activity level inthlak danglamna: A hma ang khan tlan leh khelh loh, lethargic tih hriat.
• Kal harsa, balance vawn leh coordination: Kal laiin off balance ang maiin a lang a, thil man pawh a harsa hle.

Ngaihtuah teh, ni engemaw zat kalta atang khan i fa te chu zing lamah "Mommy, ka lu a na," emaw, a thawk chhuak emaw a ni. Sikul hna thawk tur chuan a rilru a hah lutuk a, a muhil reng reng niin a lang. I fa, tlan kual leh inkhelh thin kha tunah chuan hmun khatah awm a tum a nih chuan chu pawh chu hetiang thil chhinchhiahna a ni thei bawk.

Naute tê têah chuan he tumor hian lu chu a lian deuhin a lang thei a ni. Mahse, naupang kum upa zawkah chuan chutiang chuan a lang lo mai thei.

Eng thilin nge AT/RT hi a thlen?

AT/RT thlentu ber chu gene pahnih zinga pakhat, SMARCB1 emaw SMARCA4 emaw a mutation vang a ni. Chungte chu "tumor suppressor genes" an ti a. A awlsam zawngin, heng gene-te hian kan taksaa cell tlan chakna leh lian tham tak control thei protein an siam a. Chuvangin, heng genes-ah hian inthlak danglamna emaw, chhiatna emaw a awm chuan, cell te chu rang tak leh thunun theih lohvin an thang tan thin. Chuvang chuan heng tumor te hi a lo piang ta a ni.

Hei hi genetic thil a ni em?

Ni e, AT/RT vei thenkhat chu genetic a ni thei. Chumi awmzia chu he cancer thlentu germline mutation hi nu leh pa atanga naupang hnenah rochun theih a ni tihna a ni. Mahse, a tam zawkah chuan thlahtu a ni lo. Chumi awmzia chu naupang pakhatah hian mutation hi a awm fo thei tihna a ni a, chhungkuaah hian he natna hi tu mahin an la nei lo a nih pawhin a thleng thei tihna a ni.

Tu nge hlauhawm ber?

AT/RT hian naupang kum 3 hnuai lam a nghawng tam ber a, mahse, naupang kum eng pawhah, a nih loh leh puitlingah pawh a lo awm thei tih hriat reng a pawimawh.

Engtin nge AT/RT hi hmuhchhuah a nih?

Doctor chuan AT/RT hi taksa enfiahna, thluak enfiahna leh specialized test dang tlemte tih hmangin a hmuchhuak thin. Heng test hmasa ber neih chhung hian doctor chuan i fate natna lan chhuah dan te, a hmaa a damdawi lam chanchin te, leh i chhungte zingah he natna hi an nei tawh em tih te a zawt ang che.

Hei bakah hian test an tih te chu:

• MRI (Magnetic Resonance Imaging) scan: Hei hian thluak leh ruhro (spinal cord) chipchiar takin thlalak a la thei. Hei hian tumor awmna hmun dik tak leh a lian zawng hriat theih nan a pui thei a ni.
• Lumbar puncture: Hei hi ruh (spinal cord) vel a tui sample te tak te (cerebrospinal fluid) lak a, cancer cell a darh em tih enfiah a ni.
• Genetic testing neih dan tur: 1.1.He test hi a hmaa kan sawi tawh SMARCB1 emaw SMARCA4 genes-ah hian danglamna a awm em tih hriat nan tih a ni.
• Biopsy: Hei hi tumor chi hrang hrang lak a, microscope hmanga enfiah a, cancer chi hrang hrang finfiah a ni.

AT/RT enkawl dan tur chu engte nge ni?

I fa doctor chuan AT/RT enkawlna atan a hnuaia mi hi a rawn rawt thei ang:

Surgery hmanga tumor lakchhuah a ni

Neurosurgeon chuan operation hmangin a theih ang angin tumor chu a la chhuak ang. Mahse, operation hnua cancer cell la awm zawng zawng tihchhiat nan chemotherapy leh radiation therapy a ngai thei bawk.

Chemotherapy hmanga enkawl a ni

Hei hi damdawi chi khat, cancer cell thattu emaw, inthen darh thei lo emaw a ni. A châng chuan he damdawi hi hmui emaw, vein emaw muscle emaw-a injection angin emaw (systemic chemotherapy) pek a ni. Kawng dang chu damdawi chu ruhro (spinal cord) vel tuiah direct-a inject (intrathecal chemotherapy) a ni.

Radiation hmanga enkawlna a ni

Hei hian high-energy X-ray hmangin cancer cells te chu a that emaw, an thanlenna tur a titawp emaw a ni. Machine pakhat chuan heng radiation beam te hi tumor lam hawiin chiang takin a kaihruai thin. Naupang kum 3 hnuai lam chu radiation therapy hi a tlem hle a, a chhan chu an thanlenna leh an thanlenna a nghawng thei a ni.

Stem Cell thlak danglam a ni

High-dose Chemotherapy hnuah naupang taksa atanga cell bo tawhte thlak nan stem cell transplant an ti thin. Chemotherapy an tan hmain doctor-te chuan naupang stem cell thenkhat chu an la a, an dahkhawm thin. Tichuan, chemotherapy a zawh chuan cell te chu vein (intravenously) hmangin naupang chhungah an lut leh ta a ni.

Targeted Therapy hmanga tih a ni

Hei hi AT/RT enkawlna thar a ni a, tunah hian clinical trial neih mek a ni. Hetah hian damdawi thenkhat chuan cancer cell te lo thanglian leh inthen darh tura puitu thil thenkhat chu block in hna an thawk thin.

Immunotherapy hmanga enkawl a ni

Hei hi tunah hian AT/RT enkawlna clinical trial neih mek a ni bawk. Naupangin a taksa hriselna (immune system) a cancer do theihna tura puitu hmangin hna a thawk a ni.

Palliative Care hmanga enkawl a ni

Hei hi naupang natna lanchhuahna tihziaawmna tur, natna tihziaawmna tur, hahdamna pekna tur leh an nunphung tihchangtlun nan tih a ni.

Pawimawh: Doctor chuan heng test zawng zawng hi a ti vek ang a, i fa tan eng enkawlna nge tha ber tih a rel ang. A chang chuan enkawlna pakhat aia tam pek theih a ni bawk. Damdawi enkawlna hnuaia awm chhunzawm zel a pawimawh a, enkawl hnuah pawh test neih a pawimawh. Hetiang hian enkawlna a hlawhtling em tih leh cancer a lo let leh tawh em tih i hmu thei ang.

I naute medical team-ah hian tute nge awm?

AT/RT enkawl hian doctor leh healthcare provider hrang hrang i hmu thei ang. I fate medical team-ah hian:

• Naupang enkawltu emaw chhungkaw doctor emaw (Primary care physician) emaw .
• Neurosurgeon te an ni
• Radiation hmanga oncologist te an ni
• Neurologist te an ni
• Genetic counselor te an ni

Enkawlna hian side effect a nei em?

Ni e, AT/RT enkawlna zawng zawngah hian side effect a awm thei. I fa doctor chuan heng side effects te hi eng nge ni tih leh enkawl lai hian eng nge fimkhur tur tih a hrilhfiah ang che. Side effect thenkhat chu a awm nghal thei a, thenkhat erawh chu thla tam tak hnuah chauh a lang lo thei bawk. Zawhna i neih chuan doctor zawh hreh suh.

AT/RT hi eng nge a Outlook/Prognosis?

AT/RT hi cancer chi a ni a, a nasat em em a, a darh chak hle a, enkawlna a tihdam kim loh chuan naupang nun hi a tawp thuai thei a ni. Mahse, hei hi mi tinah a inang lo hle. Entirnan, operation hmanga tumor chu lakchhuah vek theih a nih chuan a dam theihna chance a awm.

Outlook hi thil engemaw zatin a hril a:

• I fa kum zat.
• Genetic inheritance atanga lo chhuak a ni.
• Engtiang chiahin nge him taka tumor hi operation hmanga lakchhuah theih ang?
• Cancer hian taksa peng dangah a darh tawh em tih.

I fate prognosis chungchang dik ber chu i doctor chauhvin a pe thei che a ni. Zawhna i neih chuan i fa medical team te nen inbia ang che.

AT/RT natna damchhuah leh damchhuah zat chu engzat nge ni?

AT/RT hi cancer chi khat hmuh tur awm lo tak a nih avangin he natna damchhuahna leh damchhuah zat dik taka sawi theihna tur data a tlem hle. I fa doctor chuan i fa dinhmun chungchangah thu thar ber ber a pe thei ang che.

AT/RT hi ven theih a ni em?

Vanduaithlak takin tun dinhmunah chuan AT/RT ven dan tur a awm lo. Fa dang neih i beisei a nih chuan, nangmah emaw, i kawppui emaw hian AT/RT thlen thei genetic mutation i nei em tih leh i fain a rochun theihna tur hlauhawmna chu eng nge ni tih hriat tumin genetic counselor nen inbiakna neih a tha mai thei.

I naute doctor hnenah eng zawhna nge i zawh tur?

AT/RT chungchang i zir zawh hnua i rilruah zawhna tam tak awm hi thil pangngai tak a ni. I fa doctor hnenah heng zawhnate hi zawt ngei ang che:

• Khawiah nge ka fa taksaah hian tumor chu a awm?
• Eng ang enkawlna nge i rawt?
• Enkawlna hian side effect a nei em?
• Enkawlna hian ka fa thanlenna leh thanlenna a nghawng dawn em?
• Ka fate prognosis chu eng nge ni?

A tawp berah chuan a pawimawh ber (Take-Home Message) .

"I fa hian cancer a nei a ni." Heng thute hi nu leh pa hriat harsa ber pawl an ni. A hnua thil thleng tur te, i fa hmalam hun tur te i ngaihtuah a ni mai thei. Cancer natna chungchangah hian thil chiang lo tam tak a awm laiin, i fate medical team chu i kalna apiangah i bulah an awm tih hre reng ang che. Anni hian enkawlna kawng zawh dan tur te, symptoms enkawl dan tur te, leh i fate an dam chhung zawnga enkawl dan tur te an pui ang che. Research chuan AT/RT (atypical teratoid/rhabdoid tumor) chungchang leh a enkawl dan thar a hmuchhuak chhunzawm zel a ni. Chuvangin, beiseina chu bansan ngai suh.

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