Mama ɛn papa, na big lod pan yu at ɛn sɔntin we yu nɔ ivin want fɔ tink bɔt we yu smɔl pikin kam fɔ no se dɛn gɛt kansa. Bɔt sɔntɛnde, pikin dɛn kin gɛt sik dɛn we wi nɔ de ɛkspɛkt. Tide wi go tɔk bɔt wan kayn kansa we nɔ kin bɔku, we kin prɛd kwik kwik wan we kin ambɔg pikin dɛn, mɔ di yɔŋ pikin dɛn. Dɛn kɔl dis
Rhabdoid Tumor . Yu go fil strenj smɔl we yu yɛri dis nem, bɔt lɛ wi ɛksplen am simpul wan.
Wetin na Rhabdoid Tumor? Fɔ tɔk am simpul wan...
Rhabdoid Tumor na
wan kayn kansa we nɔ kin bɔku ɛn we kin gro kwik kwik wan . I kin mɔs bi pan
yɔŋ pikin dɛn ɛn bebi dɛn . We dɛn luk dɛn kansa sɛl dɛn ya wit maykroskɔp, dɛn tan lɛk
rhabdomyoblasts , we na wan kayn sɛl we de mek mɔsul dɛn. Na dat mek dɛn kɔl am "rhabdoid." dis kεnsar kin kam na pikin in kidni, sכft tisu, כ sεntri nεv sεstem (bren εn spεnal kכd).
Bɔt i sɔri fɔ no se dis kansa kin skata kwik kwik wan, ɛn dis kin mek i nɔ izi fɔ trit am. Difrɛn kayn Rhabdoid Tumor de?
Yɛs, sɔm men kayn dɛn de fɔ dis kansa dipen pan usay i kin apin. Lɛ wi si wetin dɛn bi.
1. Rhabdoid Tumɔr na di Kidni (RTK) .
Dis na rhabdoid tumor
na di kidni na pikin. Sɔntɛnde dɛn kin shɔt am as ``(RTK)``.
2. Ekstrakranial ɔ Ekstra rεnal Malignant Rhabdoid Tכmכr dεm
Dis kayn kansa kin kam na di pikin in
sɔft tisu ɛn ɔda pat dɛn lɛk in liva, in lɔng, ɛn in skin. Dɛn kin kɔl am bak
malignant rhabdoid tumors (MRT) . "Malignant" min kansa.
3. Atipik Tεratoyd Rhabdoid Tכmכr (ATRT) .
dis kayn rabdoid kansa de divεlכp na di pikin in
sεntri nεv sεstem, di bren εn di spεnal kכd. pan dis kayn kansa, di kansa sεl dεm fכs fכm na di pikin in bren כ in spεnal kכd.
bכt 50% pan dεn (ATRT) kεnsar dεm ya de divεlכp na di
sεribεl (we de kכntro di muvmεnt εn bεlε) כ
di bren stεm ( we de kכntro tin dεm lεk fכ brith εn di at rεt).
Udat kin gɛt Rhabdoid Tumors mɔ?
I kin mɔs afɛkt
bebi dɛn ɛn pikin dɛn we rili yɔŋ , mɔ di wan dɛn
we ol bitwin 11 ɛn 18 mɔnt . Big pipul dɛn nɔ kin gɛt dis sik pasmak.
Dis nɔr kin so ɔltɛm, sɔm stɔdi dɛm se i kin apun pan less dan wan pan wan milyɔn pipul dɛm.Dɛn se dis kansa kin apin smɔl smɔl. Dat min se na sik we nɔ kin apin so ɔltɛm.
Wetin mek dɛn rabdoid tumor ya kin divɛlɔp? Wetin na di kɔz?
Bɔku tɛm, di men tin we kin mek pɔsin gɛt rabdoid kansa na
di jɛnɛtik muteshɔn na di SMARCB1 jin . Imajin se smɔl gad de na wi bɔdi we de kɔntrol di we aw di sɛl dɛn de gro. Dis SMARCB1 jin na
wan tumor suprεsכr jin . I de mek wan prɔtin we de kɔntrol di we aw di sɛl dɛn de gro. Lɛk trafik polisman, i de stɔp di sɛl dɛn fɔ mek dɛn nɔ sheb tu kwik. So, if difεkt de, dat na, mכtεshכn, insay dis SMARCB1 jin, dat kכntrכl de lכs
εn di sεl dεm de sheb tu kwik, we de mek dεn gεt kansa . rεli, dεn kεnsar dεm ya kin divεlכp bak bikoz fכ wan mכtεshכn insay כda tכmכro sכpresכr jin we dεn kכl SMARCA4. Pan ɔl we sɔm pikin dɛn kin gɛt dis jin we dɔn chenj frɔm dɛn mama ɛn papa,
bɔku tɛm dɛn kansa ya kin apin bikɔs ɔf wan nyu jɛnɛtik we kin apin we nɔ gɛt ɛni famili histri . Dis min se ivin if nɔbɔdi na di famili nɔ bin dɔn gɛt di muteshon bifo, di pikin in sɛl dɛn kin gɛt dis muteshon bay chans. We dɛn de trit di pikin, dɛn kin du
wan jenɛtik ɛvalueshɔn fɔ luk fɔ dis jin muteshon.
Wetin na di sayn dɛm fɔ Rhabdoid Tumor?
Di sayn dɛm
kin difrɛn fɔ di pikin in ej ɛn usay di kansa de . Bɔrku tɛm, di sayn dɛm kin bigin na di say we di kansa de gro. Dɛn tin ya kin bi se di pikin in nerv dɛn kin pwɛl, i nɔ kin izi fɔ blo, ɔ i kin gɛt smɔl smɔl smɔl smɔl smɔl smɔl smɔl smɔl smɔl smɔl smɔl smɔl smɔl smɔl smɔl smɔl smɔl smɔl smɔl smɔl smɔl smɔl smɔl smɔl smɔl smɔl smɔl smɔl smɔl smɔl smɔl smɔl smɔl smɔl smɔl smɔl smɔl smɔl smɔl smɔl smɔl smɔl smɔl smɔl smɔl smɔl smɔl smɔl smɔl smɔl smɔl smɔl smɔl smɔl smɔl.
Bikɔs dis kansa kin skata kwik kwik wan, di sayn dɛm kin sho kwik kwik wan. Ɔda sayn dɛn kin bi:
If yu pikin gɛt wan ɔ mɔ pan dɛn sik ya,
i rili impɔtant fɔ go to dɔktɔ wantɛm wantɛm. Aw?Aw dɛn kin no dis Rhabdoid Tumor?
Di dɔktɔ we de chɛk yu pikin go fɔs du in bɔdi ɛgzam ɛn aks yu bɔt di sik dɛn we yu pikin gɛt. Dɔn dɛn go ɔda fɔ du sɔm tɛst fɔ no if dɛn dɔn no di sik. Dɛn tin ya kin bi:
- כltra saund skan: dis de yuz sawnd wev dεm we gεt hכy εnεji fכ mek wan pikchכ (sonogram) fכ di pikin in insay כgan dεm.
- CT skan: Dis kin yuz X-ray ɛn kɔmpyuta fɔ mek wan tri-dimɛnshɔnal (3D) pikchɔ fɔ di pikin in sɔft tisu ɛn bon dɛn.
- MRI skan: Dis kin yuz magnet, redio wev, ɛn kɔmpyuta fɔ mek ditayli pikchɔ dɛn bɔt say dɛn lɛk di pikin in bren ɛn in spɛnal kɔd.
- Nyurolɔjik ɛgzam: Dis kin tɛst di pikin in bren, in spɛshal kɔd, ɛn aw in nɛv de wok.
- di lכmba pankshכn / spεnal tap: insay dis, dεn de tek sεmpl sεribrospεnal fכluid (CSF) frכm di pikin in spεnal kכd εn dεn de egzamin am כnda maykroskכp fכ si if εni kεnsar sεl dεm de.
Bɔt dɛn skan ya kin sho rhabdoid tumor dɛn we tan lɛk ɔda kayn kansa. So bɔku tɛm, dɔktɔ dɛn kin tek
di tisu sɛmpul dɛn ɛn ɔda fɔ mek dɛn du ɔda tɛst dɛn. Dɛn tɛst ya na:
- jεnεtik tεst: dεn tek sεmpl fכ di pikin in bכdi כ tisu εn tεst fכ mכtεshכn insay di jin dεm `SMARCB1` εn `SMARCA4`.
- Bayopsi: Insay dis prosidur, di dɔktɔ kin yuz nidul fɔ tek smɔl sampul pan di tumbu. Dɔn wan dɔktɔ we de mɛn sik dɛn kin luk am ɔnda maykroskɔp fɔ si if ɛni kansa sɛl de. If dɛn fɛn kansa sɛl dɛn, dɛn kin pul bɔku pan di tumbu we dɛn de du di ɔpreshɔn ɔ we dɛn de du di ɔpreshɔn leta.
- Immunohistochemistry: Dis na wan rili spεsifi k tεst. i de yuz antibodi dεm fכ luk fכ sכm mak dεm/antijen dεm na wan sεmpl fכ yu pikin in tisu. Dɛn mak ya kin ɛp fɔ no if na rabdoid kansa ɔ ɔda kayn kansa.
Aw dɛn kin trit Rhabdoid Tumor?
Wan dɔktɔ we de mɛn pikin dɛn we gɛt kansa kin tek di lid fɔ trit pikin. I de wok wit wan tim we gɛt ɔda spɛshal pipul dɛn fɔ mek wan tritmɛnt plan we go fayn fɔ di pikin. Dɛn kin yuz sɔm difrɛn tritmɛnt dɛn togɛda fɔ trit rabdoid kansa. Bikɔs dis kansa kin skata kwik kwik wan, stɔdi dɔn sho se
if yu yuz bɔku tritmɛnt dɛn togɛda, i go kil di kansa sɛl dɛn pas fɔ yuz jɔs wan.
- Ɔpreshɔn: If di bayɔpsi nɔ pul di kansa, di fɔs tin we dɛn fɔ du, if i pɔsibul, na fɔ du ɔpreshɔn fɔ pul bɔku pan di kansa, sɔntɛm ɔl di kansa.
- Kimotɛrapi (Kɛmo): Dis kin min fɔ gi mɛrɛsin fɔ stɔp di kansa sɛl dɛn we de gro. Dɛn mɛrɛsin ya kin kil sɔm kansa sɛl dɛn ɛn stɔp ɔda wan dɛn fɔ sheb. Bɔt dɛn mɛrɛsin ya nɔ kin ebul fɔ no di difrɛns bitwin gud sɛl ɛn kansa sɛl, so dɛn kin mek pɔsin gɛt bad bad tin dɛn.
- Ay doz kemotɛrapi wit stem sɛl transplant: Ay doz kemotɛrapi kin kil mɔ kansa sɛl dɛn. Bɔt i kin kil bak di sɛl dɛn we gɛt wɛlbɔdi, lɛk di sɛl dɛn we de mek blɔd na di bon mɛrɔ. Fɔ sɔlv dis, dɛn kin tek sɔm pan di pikin in bon mɛro ɛn kip am bifo dɛn gi am ay doz kemotɛrapi. afta dεn trit am, dεn kin gi di bon mכro bak to di pikin fכ tek di sεl dεm we dεn dכn pwεl.
- Radieshɔn tɛrapi: Dis kin yuz ɛkstrem rayt we gɛt bɔku ɛnaji fɔ mek di kansa sɛl dɛn smɔl ɔ pwɛl. Bɔt bikɔs redyushɔn tɛrapi kin afɛkt di pikin in grow ɛn in bren divɛlɔpmɛnt, dɛn kin ajɔst di doz akɔdin to di pikin in ej ɛn saiz.
- Klinik trial: Di dɔktɔ kin tɛl yu bak fɔ du nyu klinik trial (nyu kayn kemotɛrapi, targeted therapy, ɔ immunotherapy drugs) fɔ trit yu pikin in kansa.
Wetin na di sayd ɛfɛkt dɛm we di tritmɛnt kin gɛt?
Di tritmɛnt fɔ kansa, mɔ di kemotɛrapi, kin mek i gɛt sayd ɛfɛkt. Dis na bikɔs di mɛrɛsin dɛn we dɛn kin yuz fɔ kil di kansa sɛl dɛn kin kil di sɛl dɛn we gɛt wɛlbɔdi bak. Bɔt
bɔku pan di sayd ɛfɛkt dɛn kin go afta dɛn dɔn stɔp di tritmɛnt . Yu kin wok wit yu pikin in mɛdikal tim fɔ kɔntrol dɛn sayd ɛfɛkt ya. Di kɔmɔn sayd ɛfɛkt dɛn na:
- Di ia we de lɔs `(Alopecia)` .
- Di it nɔ de te.
- Banbɛlɛ.
- Rɔnbɛlɛ.
- Nɔs ɛn vɔmit.
- Sɔl na di trot ɛn mɔt.
- Swɛlin `(Ɛdima)` .
- Nɔ ebul slip.
- We pɔsin taya pasmak .
- Prɔblɛm fɔ mɛmba tin dɛn.
Yu tink se dɛn kin mek dɛn nɔ gɛt Rhabdoid Tumors?
Bɔt i sɔri fɔ no se dɛn kansa ya kin kam bikɔs ɔf di tin dɛn we de apin na di jɛnɛtiks, so
no we nɔ de fɔ mek dɛn nɔ gɛt dɛn . Bɔt if sɔmbɔdi na yu famili dɔn gɛt rabdoid kansa ɔ ɔda kansa, ɛn yu de op fɔ gɛt pikin, i go fayn fɔ tɔk to yu dɔktɔ bɔt aw fɔ
advays yu bɔt yu jɛnɛtiks . Jɛnɛtik kɔyl kin ɛp yu fɔ ɔndastand yu risk fɔ gɛt jenɛtik kɔndishɔn na yu pikin.
Yu tink se dɛn kin mɛn Rhabdoid Tumor? Aw di pikin in tumara bambay go tan lɛk?
Di dɔktɔ we de trit yu pikin kin gi yu di rayt ansa to dis kwɛstyɔn. Bɔt,
I sɔri fɔ no se bɔku pikin dɛn we gɛt malignant rhabdoid tumor nɔ kin liv pas sɔm ia. Bɔt if dɛn no se di pikin gɛt di sik afta i dɔn ol 2 ia , di prɔgnosis kin bɛtɛ smɔl. Di rεt fɔ liv fɔ dis kansa de dipεnd pan sɔm tin dεm:- Di pikin in ej.
- Usay di kansa de na di pikin in bɔdi.
- If di kansa dɔn skata to ɔda pat dɛn na di bɔdi.
- Aw bɔku pan di kansa dɛn bin pul bay we dɛn du ɔpreshɔn.
- Aw di pikin go ansa to di tritmɛnt dɛn we dɛn kin gi di kansa.
Bikɔs malignant rhabdoid carcinoma nɔ kin bɔku, di statystik fɔ layf ɛkspɛkteshɔn de bays pan wan rili smɔl nɔmba pan di sik pipul dɛn. So, di rial layf we pikin kin liv kin difrɛn. stכdi dεm sho se di fayv ia sכvayv rεt fכ rhabdoid carcinoma of the kidney (RTK) de bitwin 20% εn 25% . Dis min se bitwin 20% ɛn 25% pan di pipul dɛm we dɛn no se gɛt RTK stil de alayv fayv ia afta dɛn dɔn no se dɛn gɛt RTK. di fayv ia sכvayv rεt fכ atypical teratoid rhabdoid carcinoma (ATRT) de bitwin 32% εn 50%. Na nɔmal tin fɔ fil big big lod ɛn sɔri we yu yɛri sɔntin lɛk dis. Bɔt mɛmba se nɔto yu wangren de.
Wetin a fɔ aks di dɔktɔ?
Na nɔmal tin fɔ gɛt bɔku kwɛstyɔn dɛn we yu kam fɔ no se yu pikin gɛt kansa. Na sɔm kwɛstyɔn dɛn we yu fɔ mɛmba fɔ aks da tɛm de:- Us kayn kansa mi pikin gɛt?
- Wetin na di stej we mi pikin gɛt kansa?
- Us tɛst dɛn mi pikin fɔ du?
- Wetin na di tritmɛnt opshɔn dɛm fɔ mi pikin in kansa?
- Wetin na di chans fɔ mek dis tritmɛnt go bifo?
- Us klinik trial dɛn de fɔ mi pikin fɔ tek pat pan?
- Aw wi go no if di tritmɛnt dɔn wok fayn?
Aw dɛn kin du fɔ fala di tritmɛnt we dɛn de du ɛn afta dɛn dɔn trit am?
Insay ɔl di tɛm we yu pikin de mɛn kansa, dɛn go nid fɔ ripit sɔm pan di tɛst dɛn we dɛn go yuz fɔ no if i gɛt di sik. Dɛn kin yuz dɛn tɛst ya fɔ no aw di tritmɛnt de wok fayn fayn wan. Bay di rizɔlt fɔ dɛn tɛst ya, yu mɛdikal tim go wok wit yu fɔ disayd us nɛks step yu fɔ tek. Dis kin min fɔ kɔntinyu, chenj, ɔr stɔp di tritmɛnt. Afta yu pikin dɔn dɔn fɔ gɛt kansa tritmɛnt, dɛn go nid fɔ kam bak fɔ mek dɛn du am fɔ fala di ɛgzam ɛn tɛst dɛn wan wan tɛm . We dɛn de du dɛn fɔlɔp ya, yu dɔktɔ go chɛk fɔ si if yu pikin in kɔndishɔn dɔn bɛtɛ ɔ if di sik dɔn kam bak. Dis fɔlɔp kin las fɔ sɔm ia afta dɛn dɔn trit am. Fɔ dɔn, mɛmba... (Tek-Home Message)
Wi no se i kin mek yu at pwɛl fɔ yɛri di nyus se yu pikin gɛt kansa. Bɔt i impɔtant fɔ mɛmba se nɔto yu wangren de.. Di wan ol tim we de trit yu pikin, inklud dɔktɔ ɛn nɔs, de ya fɔ ɛp yu ɛn yu famili insay dis tranga tɛm. Tritmɛnt dɛn de fɔ rabdoid tumor, ɛn op de fɔ yu pikin . Tɔk to yu pikin in dɔktɔ bɔt aw fɔ jɔyn kansa sɔpɔt grup fɔ mama ɛn papa ɔ famili. Yu kin gɛt bɔku kɔmfɔt ɛn ɛnkɔrejmɛnt bay we yu de sheb yu stori ɛn yɛri bɔt ɔda pipul dɛn ɛkspiriɛns.
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