Ua lohe anei ʻoe i kēia maʻi kanesa laha ʻole i kapa ʻia ʻo DSRCT? (Desmoplastic Small Round Cell Tumor) E kamaʻilio kākou me nā kikoʻī!

I kēia lā, e kamaʻilio mākou e pili ana i kahi ʻano maʻi kanesa paʻakikī a kakaʻikahi loa. Ua kapa ʻia ʻo ia ʻo Desmoplastic Small Round Cell Tumor, a i ʻole DSRCT e like me ka mea i kapa ʻia i waena o nā kauka. ʻAʻole paha ʻoe i lohe i kēia inoa ma mua, no ka mea, he maʻi ia e hoʻopilikia ana i ka poʻe kakaikahi. Akā, ʻo ka ʻike ʻana i ia mau kūlana he mea nui loa ia no mākou a me kā mākou poʻe aloha.

No laila he aha kēia DSRCT?

I ka ʻōlelo maʻalahi, ʻo DSRCT kahi maʻi e hoʻoulu ai i nā puʻupuʻu kanesa e ulu wikiwiki ana . No kēia ka māhele o ka sarcoma ʻiʻo palupalu . ʻO ia hoʻi, hiki i kēia mau puʻupuʻu ke loaʻa i nā ʻāpana palupalu o ko mākou kino ʻaʻohe iwi, e like me nā ʻiʻo, ka momona, a me nā aʻalolo. Eia nō naʻe, ma DSRCT, ulu nui kēia mau puʻupuʻu i loko o ka membrane e uhi ana i ko mākou lua ʻōpū (peritoneum) . E noʻonoʻo e pili ana, he membrane lahilahi kēia e pale ana i nā ʻōpū e like me ke akepaʻa a me nā ʻōpū i loko o ko mākou ʻōpū. No laila, ʻo kēia kahi e māhele wikiwiki ai kēlā mau hunaola kanesa a hoʻomaka e hana i nā puʻupuʻu.

ʻOiai hiki ke ulu kēia maʻi i loko o kekahi, ʻike pinepine ʻia ia i nā kāne ʻōpio ma waena o 20 a me 30 mau makahiki. ʻAʻole anei he mea kupaianaha kēlā? Aia nā lāʻau lapaʻau no kēia, a i kekahi manawa nalowale nā ​​​​hōʻailona a hiki ke loaʻa ka maʻi i nā hoʻokolohua, ʻo ia hoʻi, i ka hoʻomaha ʻana . Eia naʻe, ʻo ka mea kaumaha, ʻo ka maʻi i hoʻemi ʻia ma kēia ʻano e ʻoi aku ka nui o ka hiki ke hoʻi hou mai, ʻo ia hoʻi, e hoʻi hou mai .

Pehea ka laha ʻole o kēia maʻi i kapa ʻia ʻo DSRCT?

He mea laha ʻole ia ʻaʻole hiki iā ʻoe ke noʻonoʻo. Mai ka wā i ʻike mua ai nā kānaka noiʻi i ka maʻi i ka makahiki 1989, ua hōʻike ʻia ma kahi o 1 i loko o 1 biliona kānaka ma ka honua holoʻokoʻa. ʻO ia hoʻi, i ka hoʻohālikelike ʻia me ka heluna kanaka o Sri Lanka, he paʻakikī ke loaʻa i kekahi i hoʻokahi manawa i kēlā me kēia mau makahiki. He mea laha ʻole ia.

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He aha nā hōʻailona o DSRCT?

ʻO ka hapa nui o ka manawa, ʻaʻole nā ​​puʻupuʻu e ulu ana i loko o ka ʻōpū e hōʻike i nā hōʻailona nui a hiki i ka wā e nui loa ai, e noho ana i kahi i loko o ka ʻōpū, a hoʻopilikia i ka ʻōnaehana hoʻoheheʻe. Eia nō naʻe, aia kekahi mau hōʻailona maʻamau e ʻike ʻia:

• ʻEha ʻōpū: He ʻeha ʻōpū mau, a i kekahi manawa e ʻoi aku ka ʻino.
• Paʻa ʻōpū: Paʻakikī i ka neʻe ʻana o ka ʻōpū maʻamau.
• Ka luaʻi ʻana: Ka luaʻi ʻana.
• ʻŌpū palahalaha: Ke ʻike ʻia nei ua nui a pehu ka ʻōpū.
• Ka luaʻi a me ka nausea: Ka nalowale o ka makemake e ʻai pū me ka luaʻi a me ka luaʻi.
• ʻO ka pohō kaumaha i wehewehe ʻole ʻia: ʻO ka pohō kaumaha koke me ka ʻole o nā kapu meaʻai kikoʻī.

E nānā, hiki ke ʻike ʻia kēia mau mea e like me ka paʻa ʻana o ka ʻōpū, ka maʻi kahe, a me ka nausea i nā maʻi liʻiliʻi a mākou e loaʻa pinepine ai, ʻeā? No laila, ʻaʻole ia he manaʻo maikaʻi e makaʻu i kahi maʻi koʻikoʻi no ka mea wale nō he mau hōʻailona kēia.Eia nō naʻe, inā hoʻomau kēia mau hōʻailona no nā lā he nui a ʻoi aku paha ka ʻino, he mea naʻauao ke nīnau aku i ke kauka.

No ke aha i hana ʻia ai kēia DSRCT? He aha ke kumu?

Ua ʻike nā kānaka noiʻi ua hoʻokumu ʻia ʻo DSRCT e kahi loli o nā chromosomes i loko o kā mākou mau cell. Hoʻokumu kēia loli i kahi gene ʻano ʻē i kapa ʻia ʻo EWS-WT1 . ʻO kēia gene ke kuleana no ka ulu ʻana o nā cell cancer. Eia naʻe, ʻaʻole maopopo loa ke kumu e loli ai kēia mau chromosomes ma kēia ʻano. ʻO ia ka ʻaoʻao paʻakikī loa o kēia mau maʻi.

Pehea e ʻike ai nā kauka i kēia kūlana DSRCT?

No ka hoʻomaopopo ʻana i kēia, hoʻohui nā kauka i kekahi mau hoʻokolohua e hiki ai i ka hopena:

• Hoʻokolokolo kino: ʻO ka mea mua, e hoʻopā ke kauka i kou ʻōpū e ʻike inā hiki iā ʻoe ke manaʻo i kekahi mea, e like me nā puʻupuʻu.
• Nā hoʻāʻo kiʻi: ʻO kēia nā scan CT , nā scan MRI , a me nā hoʻāʻo ultrasound . Hiki i kēia ke kōkua i ka hoʻoholo ʻana inā he mau puʻupuʻu i loko o ka peritoneum, pehea ko lākou nui, a inā ua pālahalaha lākou i nā wahi ʻē aʻe.
• Nā hoʻāʻo hoʻoilina: Kōkua kēia mau hoʻāʻo i ka hōʻoia ʻana inā loaʻa ka hoʻololi hoʻoilina EWS-WT1 i ʻōlelo mua ʻia. ʻO kēia ka mea hiki ke haʻi pololei inā he DSRCT ia.

He aha nā lāʻau lapaʻau no DSRCT?

Hoʻohana nā kauka i kekahi mau ʻano hana e mālama ai iā DSRCT. ʻO nā mea nui:

• ʻOki kino: Wehe ʻana i nā puʻupuʻu kanesa he nui e like me ka hiki.
• HIPEC (Hyperthermic Intraperitoneal Chemotherapy): He ʻano lapaʻau kūikawā iki kēia. Ma hope o ka wehe ʻia ʻana o ka puʻupuʻu ma ke ʻoki ʻana, hoʻokomo ʻia nā lāʻau chemotherapy wela i loko o ka lua ʻōpū e luku i nā hunaola kanesa i koe.
• Chemotherapy: He lāʻau lapaʻau ikaika i hāʻawi ʻia i ke kino e hoʻopau i nā hunaola kanesa.
• Radiation therapy: ʻO ka hoʻohana ʻana i nā kukuna ikehu kiʻekiʻe e luku i nā hunaola kanesa.

Hiki i kēia mau lāʻau lapaʻau ke hoʻopau i ka maʻi, ʻo ia hoʻi, ʻaʻohe hōʻailona a ʻaʻohe hoʻokolohua e hiki ke ʻike i ka maʻi. Eia nō naʻe, ʻaʻole pinepine kēia hoʻopau ʻana i ka lōʻihi. Hiki ke hoʻi hou mai ka maʻi, no laila pono e hoʻomaka ʻia nā lāʻau lapaʻau hou a i ʻole nā ​​ʻano lāʻau like ʻole.

He mea nui: ʻOiai ke ʻano o ka lāʻau lapaʻau āu e loaʻa ai, mālama palliative mai kāu hui lapaʻauE hōʻoia e nīnau e pili ana i ia mea. Hana ʻia kēia e hōʻemi i ka ʻeha kino a me ke kaumaha noʻonoʻo i hoʻokumu ʻia e ka maʻi a hāʻawi iā ʻoe i ke kākoʻo lapaʻau, pilikanaka, a me ka noʻonoʻo āu e pono ai e ola me kēia maʻi e like me ka hiki. ʻAʻole kēia he lāʻau lapaʻau e ho'ōla ai i ka maʻi kanesa, akā hiki iā ia ke hoʻomaikaʻi nui i kou ʻano ola.

Aia kekahi mau hopena ʻaoʻao o ka lāʻau lapaʻau?

ʻAe, hiki i ke ʻoki kino, chemotherapy, a me ka radiation therapy ke hana i nā hopena ʻaoʻao. Ma hope o ke ʻoki kino e wehe i nā ʻōpū DSRCT, hiki iā ʻoe ke loaʻa nā hopena ʻaoʻao e like me ka hopena i ka anesthesia laulā a i ʻole ke kahe koko. ʻO nā hopena ʻaoʻao maʻamau o ka radiation therapy a me ka chemotherapy:

• Ka maʻi pākī
• Luhi
• Ka luaʻi a me ka luaʻi

ʻAʻole like kēia mau hopena ʻaoʻao no nā kānaka a pau, hiki i kekahi poʻe ke ʻike iki aʻe, a ʻoi aku ka nui o kekahi. Na kāu kauka e hoʻomaopopo iā ʻoe e pili ana i kēia.

He aha ka wānana o ka mea maʻi ma DSRCT?

ʻO kēia ka mea paʻakikī loa e kamaʻilio e pili ana, a ʻo ia hoʻi ka mea a nā mea a pau e makemake ai e ʻike. ʻO ka wānana ka mea a nā kauka e ʻōlelo ai hiki iā ʻoe ke manaʻo ma hope o ka mālama ʻana. Hoʻoholo lākou i kēia ma muli o nā mea e like me kahi o ke kanesa, inā ua pālahalaha, a me ka nui o ia mea i wehe ʻia i ka wā o ke ʻoki kino.

No ka mea, he maʻi ʻaʻai laha ʻole ka DSRCT, ʻaʻohe nui o ka noiʻi ʻana ma luna o ia mea. No laila, he paʻakikī i nā kauka ke ʻōlelo pololei i ka mea hiki iā ʻoe ke manaʻo a i ʻole pehea ka lōʻihi o kou ola ʻana. He mea kaumaha maoli kēia.

Hōʻike ka ʻikepili o kēia manawa ʻo ka nui o ke ola ʻana o ʻelima mau makahiki no DSRCT ma hope o ka ʻike ʻana ma waena o 15% a me 38% . ʻO ke ʻano kēia, ʻaʻole e ola nā kānaka a pau. Eia nō naʻe, ua hōʻike kekahi loiloi ua ho'ōla loa ʻia kahi pakeneka liʻiliʻi o nā maʻi me ka metastatic DSRCT me ka lāʻau lapaʻau. Eia kekahi, ma kahi o 60% o ka poʻe i mālama ʻia ma mua o ka laha ʻana o ke kanesa e ola ana ma hope o ʻelima mau makahiki. No laila, hiki iā ʻoe ke ʻike i ke koʻikoʻi o ka ʻike mua ʻana a hoʻomaka koke i ka lāʻau lapaʻau, ʻeā?

Pehea wau e mālama ai iaʻu iho me kēia maʻi?

He maʻi kanesa koʻikoʻi a laha ʻole ka DSRCT. Hiki iā ia ke hoʻi hou mai i nā mahina a i ʻole nā ​​makahiki ma hope o ka mālama ʻia ʻana. ʻAʻole maʻalahi ka noho ʻana me ka makaʻu i ka hoʻi hou ʻana mai o ke kanesa. Eia nō naʻe, aia kekahi mau mea e hiki ke kōkua iā ʻoe ma kēia huakaʻi:

• E hoʻomaopopo i kou kūlana: No ka mea he mea kakaikahi ka DSRCT, hiki ke paʻakikī ke loaʻa ka ʻike pololei a hou e pili ana i ia mea. No laila, mai kānalua e nīnau i kāu hui lapaʻau i ka mea e manaʻo ai. ʻIke maikaʻi lākou iā ʻoe a me kou kūlana.
• E nīnau e pili ana i ke komo ʻana i nā hoʻokolohua lapaʻau:Ke hoʻāʻo nei nā kānaka noiʻi i nā ala hou e mālama ai iā DSRCT. E nīnau i kāu kauka inā hiki iā ʻoe ke komo i kahi hoʻokolohua lapaʻau .
• E noʻonoʻo i ke ola ʻana i ka maʻi kanesa: Mai ka lā i ʻike ʻia ai ʻoe, he mea hakakā ʻoe a he mea ola no ke koena o kou ola. E nīnau i kāu hui lapaʻau e pili ana i nā papahana kūikawā no ka poʻe me ka maʻi kanesa e hoʻi hou ana.
• E kiʻi i ke kākoʻo: E nīnau i kāu hui lapaʻau e pili ana i nā hui kākoʻo no ka poʻe me nā maʻi ʻaʻai kakaikahi. ʻO ka hoʻolilo ʻana i ka manawa a me ke kamaʻilio ʻana me ka poʻe e hele nei i nā ʻike like me ʻoe, a i ʻole ka poʻe i loaʻa nā ʻike like, hiki ke kōkua i ka hōʻemi ʻana i kekahi o ka mehameha o ka noho ʻana me DSRCT.

Āhea wau e ʻike hou ai i kaʻu kauka?

He kūlana ka DSRCT e hiki ke hoʻi hou mai. No laila, hiki i kāu kauka ke ʻōlelo aku i nā hoʻokolohua kiʻi (e like me ka CT scan) i kēlā me kēia ʻekolu a ʻeono mahina e nānā i nā puʻupuʻu hou i loko o ka ʻōpū a i ʻole ma kahi ʻē aʻe. He mea nui loa ia ʻaʻole e poina i kēia mau nānā ʻana .

He aha nā nīnau e pono iaʻu e nīnau aku i kaʻu kauka?

I ka manawa e like me kēia, nui paha kāu mau nīnau. He paʻakikī ke hoʻomaopopo i nā mea āpau i ka manawa hoʻokahi. Mai hopohopo, e aʻo iki i kēia mau mea a pau. Eia kekahi mau nīnau hiki iā ʻoe ke nīnau i mea hoʻomaka:

• Pehea e hiki ai iaʻu ke ʻike maopopo ua hoʻokumu ʻia koʻu mau hōʻailona e kēia ʻano i kapa ʻia ʻo DSRCT?
• Hiki ke ho'ōla loa ʻia kēia me ka lāʻau lapaʻau?
• He aha nā lāʻau lapaʻau āu e paipai nei?
• He aha nā hopena ʻaoʻao o kēlā mau lāʻau lapaʻau?
• Pono anei iaʻu e noʻonoʻo e komo i kahi hoʻokolohua lapaʻau?

Inā ua ʻike ʻia ʻoe me DSRCT, hiki ke lilo i mea hoʻololi ola. Hiki iā ʻoe ke manaʻo ua kaumaha ʻia e nā manaʻo. Hiki iā ʻoe ke hopohopo no ka mea e hiki mai ana, pehea ke ʻano o ka lāʻau lapaʻau, a me ke ʻano o kou wā e hiki mai ana. Hiki ke hoʻonāukiuki hoʻi ka loaʻa ʻana o ka ʻike e pili ana i kahi maʻi e hoʻopilikia wale ana i kahi pakeneka liʻiliʻi o ka poʻe ma ka honua.

Hoʻomaopopo kāu hui lapaʻau i kēia mau manaʻo a pau. E hāʻawi lākou iā ʻoe i ka manawa e pono ai e hoʻomaopopo i ka mea e hana nei iā ʻoe a me ka mea e hiki mai ana. Mai makaʻu e kamaʻilio me lākou a nīnau i kāu mau nīnau.

Leka Hoʻihoʻi Hope Loa

He mea maʻamau ke kaumaha ke lohe ʻoe e pili ana i kēia maʻi i kapa ʻia ʻo DSRCT. Eia nō naʻe, e hoʻomanaʻo i kēia mau manaʻo:

• He maʻi ʻaʻai laha ʻole a koʻikoʻi hoʻi ka DSRCT. He mea nui e ʻike mua i kēlā.
• E makaʻala i nā hōʻailona. Inā loaʻa iā ʻoe ka ʻeha mau o ka ʻōpū, ka pehu ʻana, a i ʻole ka pohō kaumaha, e ʻimi i ke kōkua lapaʻau.
• He mea nui ka ʻike mua ʻana a me ka mālama koke ʻana. Hiki i kēia ke hoʻololi i ke ala o ka maʻi i kekahi ʻano.
• ʻAʻole ʻoe hoʻokahi.Aia ke kime lapaʻau, ka ʻohana, a me nā hui kākoʻo e kōkua iā ʻoe.
• E noʻonoʻo pono i ka mālama palliative. Hiki i kēia ke hoʻomaikaʻi nui i kou kūlana ola.
• Mai makaʻu e nīnau. E hōʻoia e lohe pono ʻoe i nā mea a pau mai kāu kauka mai.

Lana ko mākou manaʻo ua kōkua kēia ʻike iā ʻoe e loaʻa kahi ʻike o kēia maʻi laha ʻole. E hoʻomanaʻo, ʻo ka ʻike ka ikaika nui loa e kū ai i kekahi pilikia.

ʻO DSRCT, ʻŌpū Kelepona Poepoe Liʻiliʻi Desmoplastic, Kanesa, Kanesa ʻŌpū, Kanesa Kakaikahi, Nā Hōʻailona Kanesa, Lapaʻau Kanesa, Kanesa Peritoneum