Yu dɔn yɛri bɔt dis kansa we nɔ kin bɔku we dɛn kɔl DSRCT? (Desmoplastic Small Round Cell Tumor) Lɛ wi tɔk ditayli!

Tide wi go tɔk bɔt wan kayn kansa we kɔmplikt ɛn we nɔ kin bɔku. Dɛn kɔl am Desmoplastic Small Round Cell Tumor, ɔ DSRCT lɛk aw dɔktɔ dɛn kin kɔl am. Sɔntɛm yu nɔr dɔn yɛri bɔt dis nem bifo, bikɔs na sik we kin ambɔg smɔl pipul dɛn. Bɔt fɔ no bɔt dɛn kayn tin ya kin rili impɔtant to wi ɛn di wan dɛn we wi lɛk.

So wetin na dis DSRCT?

Fɔ tɔk am simpul wan, DSRCT na sik we kin mek pɔsin gɛt kansa we kin gro kwik kwik wan . Dis de insay di kategori we gɛt sɔft tisu sarkoma . Dis min se dɛn tumbu ya kin apin na di saf pat dɛn na wi bɔdi we nɔ gɛt bon, lɛk mɔsul, fat, ɛn nɛv. כltu, insay DSRCT, dεn tכmכro dεm ya de mεntal divεlכp na di mεmbran we de kכba wi bכdi kכva (pεritכniכm) . Tink bɔt am, dis na tin we de protɛkt ɔgan dɛn lɛk di liva ɛn di insay wi bɛlɛ. So na dis say dɛn kansa sɛl dɛn de kin sheb kwik kwik wan ɛn bigin fɔ mek tumbu dɛn.

Pan ɔl we dis sik kin kam pan ɛnibɔdi, dɛn kin si am mɔ pan yɔŋ man dɛn we ol bitwin 20 ɛn 30 ia. Tritmɛnt de fɔ dis, ɛn sɔmtɛm di sayn dɛm kin dɔn ɛn dɛn kin si di sik pan tɛst, dat na, we dɛn de rɛmishɔn . Bɔt di tin we sɔri na dat di sik we dɛn dɔn ridyus dis kayn we kin apin bak, dat na fɔ kam bak .

Aw dis sik nɔ kin bɔku we dɛn kɔl DSRCT?

I so rare yu nɔ kin ivin imajin. Frɔm we di wan dɛn we de stɔdi bɔt dis sik bin fɔs no bɔt dis sik insay 1989, dɛn dɔn ripɔt am pan lɛk 1 pan ɛvri wan bilyɔn pipul dɛn ɔlsay na di wɔl. Dat min se, we yu kɔmpia am to di pipul dɛn na Sri Lanka, i at fɔ fɛn pɔsin ivin wan tɛm ɛvri sɔm ia. Na dat rare.

Wetin na di sayn dɛm fɔ DSRCT?

Bɔrku tɛm, di tɔŋ dɛm we de gro insay di bɛlɛ nɔ kin kɔz ɛni big big sayn te dɛn tu big, tek ples na di bɛlɛ, ɛn afɛkt di dijestiv sistɛm. Bɔt sɔm kɔmɔn sayn dɛn de we yu kin si:

• Bɛlɛ pen: Na pen we de kɔntinyu fɔ de na yu bɛlɛ, sɔm tɛm dɛn de i kin wɔs.
• Kɔnstipɛshɔn: I nɔ kin izi fɔ mek yu gɛt bɔdi ɔltɛm.
• Dayarɛa: Na fɔ vɔmit.
• Bεlε we distεnd: di bεlε de sho se i big εn swεla.
• Nɔs ɛn vɔmit: Nɔ kin want fɔ it we kin kam wit nɔs ɛn vɔmit.
• We yu nɔ ebul fɔ ɛksplen am: We yu de lɔs yu wet wantɛm wantɛm we yu nɔ gɛt ɛni patikyula tin we yu fɔ it.

Naw luk, dɛn tin ya lɛk kɔnstipɛshɔn, dayarɛa, ɛn nɔys kin si bak pan smɔl smɔl sik dɛn we wi kin gɛt, nɔto so? So e nɔr fayn fɔ frayd fɔ gɛt siriɔs sik jɔs bikɔs yu gɛt dɛn sik ya.Bɔt if dɛn sik ya kɔntinyu fɔ de fɔ pas sɔm dez ɔ i go wɔs, i go fayn fɔ mek yu go to dɔktɔ.

Wetin mek dis DSRCT kin apin? Wetin na di rizin?

Risach pipul dεn dכn fכnshכn se DSRCT de kכz fכ chenj na di kromozom dεm na wi sεl dεm. dis chenj de mek wan abnכmal jin we dεn kכl EWS-WT1 . Dis jin de mek di kansa sɛl dɛn gro. Bɔt dɛn stil nɔ no di rayt tin we mek dɛn kromozom ya kin chenj dis we. Dat na di tin we kin mek dɛn sik dɛn ya nɔ izi fɔ dɛn.

Aw dɔktɔ dɛn kin no dis DSRCT kɔndishɔn?

Fɔ no dis, dɔktɔ dɛn kin jɔyn bɔku tɛst dɛn fɔ kam fɔ no se:

• Fɔ chɛk yu bɔdi: Fɔs, di dɔktɔ go fil yu bɛlɛ fɔ si if yu go ebul fɔ fil ɛnitin, lɛk we yu de fil lɛk yu bɛlɛ.
• Imej tɛst: Dɛn tin ya na CT skan , MRI skan , ɛn ɔltra saund tɛst . Dɛn tin ya kin ɛp fɔ no if tumbu dɛn de na di bɛlɛ, aw dɛn big, ɛn if dɛn dɔn skata to ɔda say dɛn.
• Jεnεtik tεst dεm: dεn tεst ya de εp fכ kכnfכm if di EWS-WT1 jεnεtik mכtεshכn we wi bin dכn tכk bכt de. Dis na wetin kin no kɔrɛkt wan if na DSRCT.

Wetin na di tritmɛnt dɛm fɔ DSRCT?

Dɔktɔ dɛn kin yuz bɔku we dɛn fɔ trit DSRCT. Di men wan dɛn na:

• Ɔpreshɔn: Dɛn kin du ɔpreshɔn fɔ pul bɔku bɔku kansa tumbu dɛn.
• HIPEC (Hyperthermic Intraperitoneal Chemotherapy): Dis na tritmɛnt we spɛshal smɔl. Afta dɛn dɔn ɔpreshɔn di tumbu, dɛn kin put kemotɛrapi drɔgs we dɛn dɔn ɔt insay di bɛlɛ fɔ pwɛl ɛni kansa sɛl we lɛf.
• Kimotɛrapi: Na pawaful mɛrɛsin we dɛn kin gi di bɔdi fɔ pwɛl di kansa sɛl dɛn.
• Radieshɔn tɛrapi: Na di we aw dɛn de yuz rayt we gɛt bɔku ɛnaji fɔ pwɛl di kansa sɛl dɛn.

Dɛn tritmɛnt ya kin put di sik na rɛmishɔn , we min se nɔr simptom nɔr de ɛn nɔr tɛst nɔr kin no di sik. Bɔt bɔku tɛm, dis rɛmishɔn nɔ kin las fɔ lɔng tɛm. Dis sik kin kam bak , so dɛn kin nid fɔ bigin fɔ yuz nyu tritmɛnt ɔ difrɛn we fɔ trit am.

Impɔtant: I nɔ mata us tritmɛnt yu gɛt, palliativ kia frɔm yu mɛdikal timMek shɔ se yu aks bɔt am. Dɛn kin du dis fɔ ridyus di pen na yu bɔdi ɛn maynd strɛs wae de sik kin kam wit ɛn fɔ gi yu de mɛdikal, sɔshal, ɛn saykilɔjik sɔpɔt wae yu nid fɔ liv wit dis sik fayn fayn wan. Dis nɔto tritmɛnt we de mɛn kansa, bɔt i kin rili ɛp yu fɔ liv yu layf.

Ɛni bad tin de we di tritmɛnt kin du?

Yɛs, ɔpreshɔn, kemotɛrapi, ɛn redyushɔn tɛrapi ɔl kin mek pɔsin gɛt sayd ɛfɛkt. Afta dɛn du ɔpreshɔn fɔ pul di DSRCT tumbu dɛn, yu kin gɛt sayd ɛfɛkt dɛn lɛk we yu gɛt riakshɔn to jenɛral anestezi ɔ we yu de blɔd. Di kɔmɔn sayd ɛfɛkt dɛn we redyushɔn tɛrapi ɛn kemotɛrapi kin gɛt na:

• Rɔnbɛlɛ
• Taya
• Nɔs ɛn vɔmit

Dɛn sayd ɛfɛkt ya nɔ kin apin di sem we fɔ ɔlman, sɔm pipul dɛn kin gɛt smɔl, sɔm kin gɛt mɔ. Yu dɔktɔ go tɛl yu bɔt dis.

Wetin na di pɔsin in prɔgnosis na DSRCT?

Dis na di tin we at fɔ tɔk bɔt, ɛn na wan we ɔlman want fɔ no. Prɔgnosis na wetin dɔktɔ dɛn se yu kin ɛkspɛkt afta tritmɛnt. Dɛn kin disayd fɔ du dis bay tin dɛn lɛk usay di kansa de, if i dɔn skata, ɛn ɔmɔs pan am dɛn bin pul we dɛn bin de du di ɔpreshɔn.

Bikɔs DSRCT na kansa we nɔ kin bɔku, nɔto bɔku risach dɛn de du bɔt am. So i nɔ kin izi fɔ mek dɔktɔ dɛn tɔk di rayt tin we yu go ebul fɔ ɛkspɛkt ɔ aw lɔng yu go ebul fɔ liv. Dis kin rili mek wi at pwɛl.

di data we de naw sho se di fayv ia sכvayv rεt fכ DSRCT afta dεn no di sik de bitwin 15% εn 38% . Dis min se nɔto ɔlman go wɛl. Bɔt wan analisis dɔn sho se smɔl pasɛnt pan di wan dɛn we gɛt mɛtastas DSRCT kin wɛl kɔmplit wan wit tritmɛnt. Dɔn bak, lɛk 60% pan di wan dɛn we dɛn trit bifo di kansa skata kin de alayv afta fayv ia. So, yu kin si aw i impɔtant fɔ no am kwik ɛn bigin fɔ trit am kwik, nɔto so?

Aw a kin tek kia ɔf misɛf wit dis sik?

DSRCT na kansa we nɔ kin bɔku ɛn we kin rili siriɔs. E kin kam bak sɔm mɔnt ɔr ia afta dɛn dɔn trit am. Fɔ liv wit de fred fɔ mek di kansa kam bak nɔr izi. Bɔt sɔm tin dɛn de we go ɛp yu fɔ du dis waka:

• Ɔndastand yu kɔndishɔn: Bikɔs DSRCT nɔ kin bɔku, i kin at fɔ fɛn kɔrɛkt, ɔp-to-dɛt infɔmeshɔn bɔt am. So, nɔ ɛva shem fɔ aks yu mɛdikal tim wetin fɔ ɛkspɛkt. Dɛn no yu ɛn yu kɔndishɔn pas ɔlman.
• Aks bɔt fɔ tek pat pan klinik trial dɛn:Risach pipul dɛn de tɛst nyu we fɔ trit DSRCT. Aks yu dɔktɔ if yu kin tek pat pan wan klinik trial .
• Tink bɔt aw pɔsin kin sev frɔm kansa: Frɔm di de we dɛn kam fɔ no se yu gɛt am, yu dɔn de fɛt ɛn yu dɔn sev fɔ di res ɔf yu layf. Aks yu mɛdikal tim bɔt spɛshal program fɔ pipul dɛm wae gɛt kansa wae de kam bak.
• Gɛt sɔpɔt: Aks yu mɛdikal tim bɔt sɔpɔt grup fɔ pipul dɛm wae gɛt kansa wae nɔr kin bɔrku. If yu spɛn tɛm ɛn tɔk to pipul dɛm wae de go tru di sem tin dɛm wae yu kin gɛt, ɔr wae gɛt di sem kayn ɛkspiriɛns, kin ɛp fɔ ridyus sɔm pan de wan wae kin kam wae yu de liv wit DSRCT.

Ustɛm a fɔ go to mi dɔktɔ bak?

DSRCT na wan sik we kin kam bak bɔku tɛm. So, yu dɔktɔ kin tɛl yu fɔ du imej tɛst (lɛk CT skan) ɛvri tri to siks mɔnt fɔ chɛk if nyu tumbu dɛn de na di layn na di bɛlɛ ɔ ɔdasay. I rili impɔtant fɔ mek yu nɔ mis dɛn fɔlɔp chɛk- ap ya.

Us kwɛstyɔn dɛn a fɔ aks mi dɔktɔ?

Na tɛm lɛk dis, yu go gɛt bɔku kwɛstyɔn dɛn. I at fɔ ɔndastand ɔltin wan tɛm. Nɔ panik, lan ɔl dis smɔl smɔl. Na sɔm kwɛstyɔn dɛn we yu kin aks fɔ bigin:

• Aw a go no fɔ tru se na dis sik we dɛn kɔl DSRCT de mek mi sik?
• Yu tink se dis kin wɛl ɔltogɛda wit tritmɛnt?
• Us tritmɛnt dɛn yu kin advays?
• Wetin na di bad tin dɛn we dɛn tritmɛnt dɛn de kin du?
• A fɔ tink bɔt fɔ tek pat pan wan klinik trial?

If dɛn no se yu gɛt DSRCT, i kin bi sɔntin we kin chenj yu layf. Yu kin fil se yu de fil bad bad wan. Yu kin wɔri bɔt wetin go apin nɛks, aw di tritmɛnt go tan lɛk, ɛn aw yu go gɛt tumara bambay. I kin mek yu at pwɛl bak fɔ fɛn infɔmeshɔn bɔt wan sik we de ambɔg smɔl pipul dɛn nɔmɔ na di wɔl.

Yu mɛdikal tim ɔndastand ɔl dɛn filin ya. Dɛn go gi yu bɔku tɛm we yu nid fɔ ɔndastand wetin de apin to yu ɛn wetin go apin nɛks. Nɔ fred fɔ tɔk to dɛn ɛn aks ɛni kwɛstyɔn we yu gɛt.

Faynal Mɛsej fɔ Tek-Hom

Na nɔmal tin fɔ fil bad we yu lan bɔt dis sik we dɛn kɔl DSRCT. Bɔt, mɛmba dɛn pɔynt ya:

• DSRCT na kansa we nɔ kin bɔku ɛn we kin rili siriɔs. I impɔtant fɔ no dat fɔs.
• Yu fɔ no bɔt di sayn dɛn we de sho se yu gɛt dis sik. If yu bɛlɛ de pen ɔltɛm, yu de blo, ɔ yu de lɔs yu bɔdi wet, go to dɔktɔ.
• I impɔtant fɔ no am kwik kwik wan ɛn fɔ trit am kwik kwik wan. Dis kin chenj di kɔs fɔ di sik to sɔm mak.
• Nɔto yu wan de.Di mɛdikal tim, famili, ɛn sɔpɔt grup dɛn de fɔ ɛp yu.
• Fɔ tru, tink bɔt palliative care. Dis kin mek yu layf bɛtɛ bad bad wan.
• Nɔ fred fɔ aks kwɛstyɔn. Mek shɔ se yu yɛri ɔltin klia wan frɔm yu dɔktɔ.

Wi op se dis infɔmeshɔn dɔn ɛp yu fɔ ɔndastand sɔm kayn tin bɔt dis sik wae nɔr kin bɔrku. Mɛmba se, fɔ no na di big tin we go mek yu ebul fɔ bia wit ɛni prɔblɛm.

` DSRCT, Desmoplastic Smɔl Raun Sɛl Tumɔr, Kansa, Bɛb Kansa, Rare Kansa, Kansa Simptom, Kansa Tritmɛnt, Pɛritoniɔm Kansa