Yu pikin gɛt wan ɔnusual bren tumor lɛk dis? Lɛ wi tɔk bɔt AT/RT (Atypical Teratoid/Rhabdoid Tumor) .

As mama ɔ papa, wan pan di nyus we at ɛn we kin mek yu at pwɛl na fɔ no se yu pikin gɛt kansa. Na nɔmal tin fɔ fil frayd, wɔri, ɛn ivin sɔri we yu yɛri bɔt wan rare, siriɔs kansa lɛk AT/RT (atypical teratoid/rhabdoid tumor). Bɔt i impɔtant fɔ mɛmba se nɔto yu wan de pan dis tranga waka. Yu pikin in mɛdikal tim de wit yu ɛvri step na di rod.

Wetin na AT/RT (Atypical Teratoid/Rhabdoid Tumor)?

Fɔ tɔk am simpul wan, AT/RT na wan kayn kansa we de gro kwik kwik wan ɛn bigin na di sɛntral nɛvɔ sistɛm (CNS). di sεntri nεv sεstem na di bren εn di spεnal kכd. Dɛn kansa sɛl ya kin bigin na di bren ɔ di spɛnal kɔd. pan lεk af pan pipul dεm we gεt AT/RT, i kin stat na di sεribεl כ bren stεm. Dis sik kin afɛkt yɔŋ pikin dɛn mɔ.

Di sayn dɛm kin apia wantɛm wantɛm. Fɔs, yu kin tink se yu pikin gɛt smɔl sik, lɛk kɔmɔn kol. Bɔt dɛn sik ya nɔ kin dɔn wit tɛm ɔ we dɛn de trit am ɔltɛm. Na da tɛm de dɔktɔ go ɔda fɔ mek dɛn du tɛst fɔ no wetin rili bad wit yu pikin. Wae dɛn dɔn no se yu gɛt AT/RT, yu dɔktɔ go tɔk to yu bɔt di bɛst tritmɛnt fɔ yu pikin in kɔndishɔn.

Fɔ tɔk tru, bɔku tɛm di tin dɛn we kin apin to dis kayn kansa nɔ kin rili fayn. Na bikɔs i kin skata kwik kwik wan, ɛn sɔntɛnde i nɔ kin izi fɔ pul am kɔmɔt kpatakpata. So, di pikin in layf kin shɔt. Bɔt, nɔto ɔlman kin gɛt bad tin fɔ du. Risach pipul dɛn kin tray ɔltɛm fɔ fɛn nyu tritmɛnt fɔ mek dɛn gɛt mɔ chans fɔ sev pikin dɛn.

Na nɔmal tin fɔ fil bɔku kwɛstyɔn ɛn nɔr shɔ we dɛn no se yu gɛt kansa, mɔr lɛk kansa wae nɔr kin bɔrku lɛk AT/RT. Bɔt mɛmba se yu pikin in mɛdikal tim de wit yu ɔl dis waka. Plɛnti sɔpɔt de fɔ di famili ɛn di wan dɛn we de kia fɔ dɛn.

Us kayn kansa na AT/RT?

AT/RT na wan kayn kansa na di bren we nɔ kin apin so ɔltɛm we kin afɛkt di sɛntrɔl nɛvɔ sistɛm (CNS), dat na di bren ɛn di spɛnal kɔd.

Aw dis nɔ kin apin so ɔltɛm?

Wan stɔdi na Amɛrika sho se na 470 pipul dɛn nɔmɔ de liv wit AT/RT. Dat min se na lɛk 73 pipul dɛn nɔmɔ dɛn kin no se gɛt dis sik ɛvri ia. I sɔprayz fɔ no se pan dɛn 73 pipul dɛn de, na 4 nɔmɔ na big pipul dɛn. So yu kin imajin aw i kin afɛkt yɔŋ pikin dɛn mɔ, ɛn aw i nɔ kin apin so ɔltɛm.

Wetin na di sayn dɛm fɔ AT/RT?

Di sayn dɛm fɔ AT/RT kin difrɛn frɔm wan pɔrsin to ɔda pɔrsin. Dɛn kin dipen pan tin dɛn lɛk di pikin in ej ɛn usay di tumbu de. Bɔt dɛn sayn ya kin apin wantɛm wantɛm ɛn dɛn kin tranga kwik kwik wan:

• Ed de at:Dis kin apin mɔ na mɔnin. Sɔntɛnde, i kin stɔp afta yu dɔn vɔmit.
• Nɔs ɛn vɔmit: Nɔs ɛn vɔmit ɔltɛm.
• Taya: Di pikin kin fil taya ɔltɛm.
• Chenj na di aktiviti lɛvɛl: Nɔ de rɔn ɛn ple lɛk bifo, fil lɛk se yu nɔ gɛt bɛtɛ trɛnk.
• I nɔ kin izi fɔ waka, fɔ mek yu balans, ɛn fɔ wok togɛda: I kin tan lɛk se yu nɔ balans we yu de waka, ɛn i nɔ kin izi fɔ ol tin dɛn.

Imajin, fɔ sɔm dez naw, yu smɔl pikin dɔn de wek na mɔnin de se, "Mama, mi ed de at," ɔ trowe. I tu les fɔ du skul wok, ɛn i tan lɛk se i de slip ɔltɛm. If yu pikin we bin de rɔn rawnd ɛn ple, tray naw fɔ de na wan ples, dat kin bi sayn bak fɔ sɔntin lɛk dis.

pan sכm pikin dεm, dis tכmכro kin mek di ed luk big sכmtεm. Bɔt pan pikin dɛn we dɔn big, i nɔ kin klia so.

Wetin kin mek pɔsin gɛt AT/RT?

di men kכz fכ AT/RT na di mכtεshכn insay wan pan tu jin dεm, we na SMARCB1 כ SMARCA4. dεn kכl dεn tin ya "tכmכr supεrshכn jin dεm." Fɔ tɔk am simpul wan, dɛn jin ya de mek wan prɔtin we de kɔntrol di spid ɛn saiz fɔ di sɛl dɛn na wi bɔdi. So, if chenj ɔ difrɛns de na dɛn jin ya, di sɛl dɛn kin bigin fɔ gro kwik kwik wan ɛn dɛn nɔ kin ebul fɔ kɔntrol dɛn. Na dat mek dɛn tumbu ya kin fɔm.

Yu tink se dis na tin we pɔsin kin gɛt?

Yes, sɔm kes dɛm fɔ AT/RT kin bi jɛnɛtik. dis min se di jεmlayn mכtεshכn we de mek dis kεnsar kin kכmכt frכm di mama εn papa to di pikin. Bɔt bɔku tɛm, i nɔ kin kɔmɔt frɔm dɛn mama ɛn papa. Dis min se di muteshon kin apin wan wan tɛm pan pikin, ivin if nɔbɔdi na di famili nɔ bin dɔn gɛt dis sik bifo.

Udat dɛn de pan denja pas ɔlman?

AT/RT kin afɛkt pikin dɛn we nɔ rich 3 ia yet.Bɔt i impɔtant fɔ mɛmba se i kin kam pan pikin dɛn we ol ɛni ej, ɔ pan big pipul dɛn.

Aw dɛn kin no se pɔsin gɛt AT/RT?

Dɔktɔ kin no if pɔsin gɛt AT/RT bay we i de du ɛgzam pan in bɔdi, ɛgzam fɔ di nyurolɔjik, ɛn sɔm ɔda spɛshal tɛst dɛn. We dɛn de du dɛn fɔs tɛst ya, di dɔktɔ go aks yu bɔt di sik dɛn we yu pikin gɛt, di mɛrɛsin we i bin dɔn gɛt trade, ɛn if ɛnibɔdi na yu famili dɔn gɛt dis sik.

Apat frɔm dat, di tɛst dɛn we dɛn kin du na:

• MRI (Magnetic Resonance Imaging) scan: Dis kin tek ditayli pikchɔ dɛn bɔt di bren ɛn di spɛnal kɔd. Dis kin ɛp fɔ no di rayt say ɛn di sayz we di tumbu de.
• lכmba pankshכn: Dis na fכ tek sכm sכm sεmpl fכ di wata we de rawnd di spεnal kכd (sεribrospεnal fכluid) εn tεst am fכ si if di kεnsar sεl dεm dכn spre.
• Tɛst fɔ di jɛnɛtiks:dis tεst dεn de du fכ si if εni chenj de na di SMARCB1 כ SMARCA4 jin dεm we wi bin dכn tכk bכt.
• Bayopsi: Dis na fɔ tek wan smɔl pat pan di tumbu ɛn chɛk am ɔnda maykroskɔp fɔ no di kayn kansa.

Wetin na di tritmɛnt dɛm fɔ AT/RT?

Yu pikin in dɔktɔ kin tɔk bɔt dɛn tin ya as tritmɛnt fɔ AT/RT:

Ɔpreshɔn fɔ pul di tumbu

Nyurosɔjɔn go pul di tumbu as i pɔsibul wit ɔpreshɔn. Bɔt dɛn kin nid bak fɔ tek kimotɛrapi ɛn redyushɔn tɛrapi fɔ pwɛl ɛni kansa sɛl we lɛf afta dɛn dɔn du di ɔpreshɔn.

Kimotɛrapi

Dis na wan kayn mɛrɛsin we de kil di kansa sɛl dɛn ɔ stɔp dɛn fɔ sheb. Sɔntɛnde dɛn kin gi dis mɛrɛsin bay mɔt ɔ as injɛkshɔn na vein ɔ mɔsul (systemic chemotherapy). wan ɔda we na fɔ injɛkt di mɛrɛsin dairekt insay di wata we de rawnd di spɛshal kɔd (intrathecal chemotherapy).

Rɛdieshɔn Tɛrapi

Dis kin yuz ɛkstrem rayt we gɛt bɔku ɛnaji fɔ kil di kansa sɛl dɛn ɔ fɔ stɔp dɛn fɔ gro. Wan mashin de dayrɛkt dɛn raytin bim dɛn ya jɔs to di tumbu. Dɛn kin gi pikin dɛn we nɔ rich 3 ia yet redyushɔn tɛrapi pan rili smɔl dos bikɔs i kin afɛkt dɛn growth ɛn divɛlɔpmɛnt.

Stem Sεl Transplantεshכn

Afta dɛn dɔn tek bɔku kemotɛrapi, dɛn kin transplant stem sɛl fɔ tek di sɛl dɛn we dɔn lɔs na di pikin in bɔdi. Bifo di kemotɛrapi bigin, dɔktɔ dɛn kin tek sɔm stem sɛl dɛn frɔm di pikin ɛn kip dɛn. Dɔn, we di kemotɛrapi dɔn, dɛn kin gi di sɛl dɛn bak insay di pikin tru wan vein (intravenously).

Tɛrapi we dɛn de tɔk bɔt

Dis na nyu tritmɛnt fɔ AT/RT we de na klinik trial naw. Insay dis, sɔm mɛrɛsin dɛn kin wok bay we dɛn kin blok sɔm tin dɛn we kin ɛp di kansa sɛl dɛn fɔ gro ɛn sheb.

Imyunotɛrapi

Dis na tritmɛnt bak we dɛn de du klinik trial naw fɔ AT/RT. I de wok bay we i de ɛp di pikin in yon imyun sistɛm fɔ fɛt di kansa.

Palliative Care we dɛn kin gi pɔsin

Dɛn kin du dis fɔ mek di pikin nɔ gɛt bɛtɛ sik, fɔ mek i nɔ fil pen, fɔ mek i fil fayn, ɛn fɔ mek dɛn liv bɛtɛ layf.

Impɔtant: Di dɔktɔ go du ɔl dɛn tɛst ya ɛn disayd us tritmɛnt go fayn fɔ yu pikin. Sɔntɛnde, dɛn kin gi pas wan tritmɛnt. I impɔtant fɔ kɔntinyu fɔ de ɔnda dɔktɔ in sɔpɔtishɔn ɛn fɔ gɛt tɛst afta dɛn dɔn trit yu. Dis na aw yu kin si if di tritmɛnt dɔn wok fayn ɛn if di kansa dɔn kam bak.

Udat de na yu pikin in mɛdikal tim?

Yu kin si difrɛn dɔktɔ ɛn pipul dɛn we de kia fɔ wɛlbɔdi biznɛs we yu de trit AT/RT. Yu pikin in mɛdikal tim kin gɛt:

• Pikin dɛn ɔ famili dɔktɔ dɛn (Praymari kia dɔktɔ dɛn) .
• Nyurosɔjɔn dɛn
• Di wan dɛn we de stɔdi bɔt rɛdyushɔn ɔnkɔlɔji
• Di wan dɛn we de stɔdi bɔt nyurolɔji
• Di wan dɛn we de advays pipul dɛn bɔt di jɛnɛtiks

Ɛni bad tin de we di tritmɛnt kin du?

Yes, sayd ifekt kin apin wit ɔl di tritmɛnt fɔ AT/RT. Yu pikin in dɔktɔ go ɛksplen to yu wetin na dɛn sayd ɛfɛkt ya ɛn wetin fɔ wach fɔ we yu de trit am. Sɔm sayd ɛfɛkt kin apin wantɛm wantɛm, ɛn ɔda wan dɛn nɔ kin apin te sɔm mɔnt afta dat. If yu gɛt ɛni kwɛstyɔn, nɔ shek fɔ aks yu dɔktɔ.

Wetin na di Outlook/Prognosis fɔ AT/RT?

AT/RT na wan kayn kansa we kin rili agresiv, we kin skata kwik kwik wan, ɛn if di tritmɛnt nɔ kin wɛl ɔl, di pikin in layf kin dɔn kwik kwik wan. Bɔt dis kin difrɛn bad bad wan frɔm wan pɔsin to ɔda pɔsin. Fɔ ɛgzampul, if dɛn ebul fɔ pul di tumbu kpatakpata wit ɔpreshɔn, chans de fɔ mek i wɛl.

Bɔku tin dɛn de sho di we aw pipul dɛn de si tin:

• Yu pikin in ej.
• Jɛnɛtik inhɛritɛshɔn.
• Aw sef wan dɛn go ebul fɔ pul di tumbu tru ɔpreshɔn?
• If di kansa dɔn skata to ɔda pat dɛn na di bɔdi.

Na yu dɔktɔ nɔmɔ go ebul fɔ gi yu di kɔrɛkt infɔmeshɔn bɔt aw yu pikin go bifo. If yu gɛt ɛni kwɛstyɔn, tɔk to yu pikin in mɛdikal tim.

Wetin na di sɔvayv ɛn mɛn rit fɔ AT/RT?

Bikɔs AT/RT na so wan kayn kansa we nɔ kin bɔku, nɔto inɔf data de fɔ kɔrɛkt wan fɔ prɛdikt di rit we pɔsin go liv ɛn di rit we i go mɛn fɔ dis kɔndishɔn. Yu pikin in dɔktɔ go ebul fɔ gi yu di nyu tin bɔt yu pikin in kɔndishɔn.

Yu tink se dɛn kin mek dɛn nɔ gɛt AT/RT?

I sɔri fɔ no se naw, no we nɔ de fɔ mek dɛn nɔ gɛt AT/RT. If yu de op fɔ gɛt ɔda pikin, i go fayn fɔ tɔk to pɔsin we de advays yu bɔt yu jɛnɛtiks fɔ no if yu ɔ yu patna gɛt jɛnɛtik muteshon we kin mek yu gɛt AT/RT ɛn wetin na di risk fɔ mek yu pikin gɛt am.

Us kwɛstyɔn dɛn yu fɔ aks yu pikin in dɔktɔ?

Na nɔmal tin fɔ gɛt bɔku kwɛstyɔn na yu maynd afta yu dɔn lan bɔt AT/RT. Mek shɔ se yu aks yu pikin in dɔktɔ dɛn kwɛstyɔn ya:

• Usay di tumbu de na mi pikin in bɔdi?
• Us kayn tritmɛnt yu kin advays?
• Ɛni bad tin de we di tritmɛnt kin du?
• Yu tink se di tritmɛnt go afɛkt di we aw mi pikin de gro ɛn di we aw i de gro?
• Wetin na mi pikin in prɔgnosis?

Fɔ dɔn, di tin we impɔtant pas ɔl (Take-Home Message) .

"Yu pikin gɛt kansa." Dis na sɔm pan di wɔd dɛn we at fɔ mama ɛn papa kin yɛri. Yu kin wɔri bɔt wetin go apin nɛks, bɔt yu pikin in tumara bambay. Pan ɔl we bɔku tin dɛn de we nɔ kin shɔ bɔt kansa, mɛmba se yu pikin in mɛdikal tim de wit yu ɛvri step na di rod. Dɛn go ɛp yu fɔ no aw fɔ trit yu, fɔ kɔntrol di sik dɛn we yu de gɛt, ɛn fɔ kia fɔ yu pikin ɔl in layf. Risach de kɔntinyu fɔ lan mɔ bɔt AT/RT (atypical teratoid/rhabdoid tumor) ɛn fɛn nyu we fɔ trit am. So, nɔ ɛva giv ɔp op.

` AT/RT, bren kansa, pikin kansa, kansa simptom, kansa tritmεnt, jεnεtik mכtεshכn, nεv sεstem