Ua lohe paha ʻoe i ka inoa ʻo 'Chordoma'? ʻAʻole paha. No ka mea, he mea laha ʻole loa ia, ʻo ia hoʻi, he maʻi ʻino i ʻike pinepine ʻole ʻia. Hoʻomohala kēia puʻupuʻu kanesa ma nā wahi koʻikoʻi ʻelua o ko kākou kino. ʻO kekahi ko kākou iwi kuamoʻo, a ʻo kekahi ke kumu o ko kākou iwi poʻo. He mea kūpono ke manaʻo iki i ka makaʻu ke ʻōlelo ʻia ka huaʻōlelo kanesa ma ia wahi. Akā, mai hopohopo. E kamaʻilio mākou e pili ana i nā mea āpau ma ke ʻano maʻalahi, maopopo, a maopopo hoʻi no ʻoe.
I ka ʻōlelo maʻalahi, he aha ʻo Chordoma?
He maʻi ʻaʻai ka Chordoma e ulu ana i loko o ko kākou mau iwi. I ka pololei, no kahi hui o nā maʻi ʻaʻai i kapa ʻia ʻo sarcomas. He maʻi ʻaʻai lohi loa ia e ulu ana. ʻO ia hoʻi, hiki ke noho asymptomatic no ka manawa lōʻihi.
Hiki i kēia maʻi kanesa ke ulu ma nā wahi āpau o ka iwi kuamoʻo, akā aia ʻekolu mau wahi maʻamau:
- ʻO ke kiko haʻahaʻa loa o ka iwi kuamoʻo (Sacrum): Ma kahi o 35% o nā chordomas āpau e ulu ana ma kēia wahi.
- Kumu iwi poʻo: Hoʻomohala ʻia kekahi 35% o nā hihia ma ʻaneʻi. Ua kapa ʻia ka iwi ma kēia wahi ʻo 'clivus'. Ua kapa ʻia hoʻi kēia ʻano ʻo 'clival chordomas'.
- Nā iwi kuamoʻo ʻē aʻe o ka iwi kuamoʻo: ʻO ke koena 30% e loaʻa ana ma nā ʻāpana ʻē aʻe o ka iwi kuamoʻo. ʻOi aku ka maʻamau o lākou ma ka lua o ka iwi kuamoʻo cervical, ukali ʻia e nā iwi kuamoʻo lumbar a me thoracic.
ʻO ka pilikia nui me kēia maʻi kanesa, ʻoiai e ulu mālie ana, komo ia i nā ʻāpana koʻikoʻi o ka ʻōnaehana nerve a puni. ʻO ia hoʻi, hiki iā ia ke hōʻino i nā wahi koʻikoʻi loa e like me ka lolo a me ke kaula spinal.
ʻO kekahi mea ʻē aʻe, he kiʻekiʻe kona ʻano e hoʻi hou mai, ʻoiai ma hope o ka mālama ʻia ʻana. Hoʻi pinepine ia ma kahi like me ia ma mua. Eia kekahi, ma kahi o 30% - 40% o nā hihia, hiki i kēia maʻi kanesa ke laha (metastasize) i nā ʻāpana ʻē aʻe o ke kino. Inā hana ia, laha pinepine ia i:
- I nā māmā
- I nā lymph nodes a puni
- I nā iwi ʻē aʻe
- I ke akepaʻa
- I ka ʻili
Aia kekahi mau ʻano o Chordoma?
ʻAe, ua ʻike ka World Health Organization (WHO) i ʻekolu mau ʻano nui o kēia maʻi kanesa. Hoʻokumu ʻia kēia mau hoʻokaʻawale ʻana ma ke ʻano o ke ʻano o nā hunaola kanesa ma lalo o kahi microscope (histology). E nānā kākou i ke ʻano o lākou.
| ʻAno Chordoma | He wehewehe maʻalahi |
|---|---|
| ʻO ke Chordoma Kuʻuna/Kuʻuna | ʻO kēia ke ʻano maʻamau. Hoʻopilikia ia i 80%-90% o nā maʻi. Ua like kona mau ʻāpana me nā "pehu" ma lalo o kahi microscope. ʻO ka chondroid chordoma, ka mea i hana ʻia ma ke kumu o ke poʻo, he ʻano ʻano o kēia ʻano. |
| ʻO Chordoma i hoʻokaʻawale ʻia | He mea kākaʻikahi loa kēia (ʻaʻole i ʻoi aku ma mua o 5%). Hōʻike ʻia ia e kahi hōʻiliʻili ʻano ʻē o nā cell. Ulu wikiwiki ia ma mua o ke ʻano maʻamau, ʻoi aku ka huhū, a ʻoi aku ka nui o ka pilikia o ka laha ʻana (metastasizing) i nā ʻāpana ʻē aʻe o ke kino. |
| ʻO Chordoma i hoʻokaʻawale maikaʻi ʻole ʻia | ʻOi aku ka kakaikahi o kēia. ʻAʻole i hōʻike ʻia ma mua o 60 mau hihia i nā moʻolelo lapaʻau. Hōʻike ʻia kēia ʻano e ka nalowale ʻana o kahi gene i kapa ʻia ʻo SMARCB1 a i ʻole INI1 i loko o nā cell. ʻOi aku ka maʻamau o kēia ʻano i nā keiki a me nā ʻōpio . |
ʻO wai ka mea i loaʻa pinepine i kēia maʻi? Pehea ka maʻamau?
ʻOiai hiki ke ulu ka chondroma i kēlā me kēia makahiki, ʻoi aku ka maʻamau i nā pākeke ma waena o 50 a me 80 mau makahiki. He pakeneka liʻiliʻi, ma kahi o 5%, e ulu ana i loko o nā keiki. Eia kekahi, ʻoi aku ka nui o ka loaʻa ʻana o kēia maʻi i nā kāne ma mua o nā wahine.
He mea kākaʻikahi loa kēia a hoʻokahi wale nō i loko o hoʻokahi miliona (100,000) mau kānaka o ka heluna kanaka e loaʻa i kēia maʻi i kēlā me kēia makahiki . ʻO ke ʻano kēia, ʻoiai ma kahi ʻāina e like me kā mākou, he kakaikahi nā hihia hou i hōʻike ʻia i kēlā me kēia makahiki.
ʻO ka mea nui loa, he maʻi ʻino mau ka Chordoma. ʻAʻohe ʻano ʻaʻole he maʻi kanesa.
He aha nā hōʻailona o kēia?
I ka ulu ʻana o ka chordoma, kau ia i ke kaomi ma luna o ka lolo a puni a i ʻole ke kaula kuamoʻo. Hoʻokumu kēia kaomi i nā hōʻailona. Eia kekahi, hiki ke ʻokoʻa nā hōʻailona ma muli o ka wahi o ka puʻupuʻu.
E nānā kākou ma ka papa ma lalo nei pehea e ʻokoʻa ai nā hōʻailona ma muli o kahi o ka puʻupuʻu.
| Kahi o ka Puʻupuʻu | Nā Hōʻailona Hiki |
|---|---|
| Nā hōʻailona maʻamau e hiki mai ana | ʻEha, nāwaliwali, a me/a i ʻole maneʻo ma ke kua, nā lima, a i ʻole nā wāwae. |
| Nā Inoa Kumu Iwi Poʻo | - ʻIke pālua (diplopia) - ʻIke pōwehiwehi - ʻEha poʻo - ʻEha a mae paha ka maka |
| Ma ka wahi haʻahaʻa loa o ka iwi kuamoʻo (Tailbone/Sacrum) | - He puʻupuʻu i hiki ke ʻike ʻia ma o ka ʻili - Paʻakikī i ka mimi ʻana a i ʻole ka defecating (nalowale ke kaohi ʻana) - ʻEha ma ka ʻūhā a i ʻole ke kua haʻahaʻa |
No ke aha e ulu ai kēia ʻano maʻi kanesa? He aha ke kumu?
ʻAʻole hiki i nā kānaka noiʻi ke kuhikuhi pololei i ke kumu, akā manaʻoʻiʻo lākou he pili nā mutations i loko o kahi gene i kapa ʻia ʻo TBXT .
E noʻonoʻo e pili ana i ia mea, i ka wā e ulu mua ana kahi pēpē i loko o ka ʻōpū o ka makuahine, ma mua o ka ulu ʻana o ke kuamoʻo, e hana ʻia kahi iwi liʻiliʻi i kapa ʻia ʻo ka notochord . ʻO kēia ka mea e ulu aʻe ma hope i loko o ke kaula kuamoʻo. ʻO ka maʻamau, nalowale loa kēia notochord i ka wā e hiki ai ke pēpē i kahi o 8 mau pule.
Akā, he mea kākaʻikahi loa, hiki i kekahi o kēia mau pūnaewele ke noho i loko o ke kumu o ke poʻo a i ʻole i loko o nā iwi o ke kuamoʻo. Ua manaʻoʻiʻo ʻia ma hope aku, inā he loli i loko o ka gene TBXT a mākou i kamaʻilio ai, hiki i kēia mau pūnaewele i koe ke hoʻomaka e ulu me ka ʻole o ke kāohi ʻia a lilo i maʻi ʻaʻai chondroma.
Eia kekahi, ʻoi aku ka nui o ka pilikia o ka poʻe me ke ʻano genetic tuberous sclerosis i ka hoʻomohala ʻana i ka chordoma.
Pehea e ʻike ai i ka maʻi? (Diagnosis)
Inā loaʻa iā ʻoe nā hōʻailona i helu ʻia ma luna, pono ʻoe e ʻike mua i kāu kauka. E nīnau ke kauka iā ʻoe e pili ana i kāu mau hōʻailona a me kou mōʻaukala olakino. A laila, e hana lākou i kahi hoʻokolohua kino a me kahi hoʻokolohua neurological.
Inā kānalua ʻia kahi puʻupuʻu maʻi ʻaʻai, e kuhikuhi ke kauka iā ʻoe no nā hoʻokolohua kiʻi.
- X-ray
- ʻO ke kiʻikuhi Computed Tomography (CT)
- Ke nānā ʻana i ke kiʻi Magnetic Resonance Imaging (MRI)
Ma hope o kēia mau hoʻokolohua, e kuhikuhi ʻia paha ʻoe i ke kauka loea i ka maʻi ʻaʻai iwi. Pono paha nā hoʻokolohua hou aʻe e hōʻoia i ka maʻi a ʻike inā ua laha i nā ʻāpana ʻē aʻe o ke kino.
ʻO ke ala wale nō e maopopo ai he 100% e pili ana i ka maʻi, ʻo ia ka loaʻa ʻana o kahi biopsy , ʻo ia hoʻi ka lawe ʻana i kahi ʻāpana liʻiliʻi o ka ʻiʻo mai ka puʻupuʻu me ka hoʻohana ʻana i kahi nila liʻiliʻi a nānā iā ia ma lalo o kahi microscope.
Pehea e mālama ʻia ai?
ʻO ke ʻoki kino ka lāʻau lapaʻau nui a maikaʻi loa no ka chordoma. Loaʻa nā hopena maikaʻi loa no ka mea maʻi ma ka wehe ʻana i ka nui o ka puʻupuʻu kanesa e like me ka hiki (en bloc resection).
Eia naʻe, ʻaʻole kēia i maʻalahi e like me ka mea i ʻike ʻia no ka mea, e like me kā mākou i kūkākūkā ai ma mua, hana ʻia kēia mau puʻupuʻu kokoke i nā ʻōpū a me nā aʻalolo koʻikoʻi a koʻikoʻi.
- ʻO nā puʻupuʻu ma ke kumu o ke poʻo: He mea paʻakikī loa kēia e wehe loa no ka mea aia lākou ma kahi kokoke i ka lolo, nā aʻalolo koʻikoʻi, a me nā kīʻaha koko.
- Nā puʻupuʻu kuamoʻo: Hiki i kēia mau mea ke hoʻouka i ke kaula kuamoʻo, nā aʻalolo, a me nā kīʻaha koko nui. Inā hōʻino ʻia kēia mau mea i ka wā o ke ʻoki ʻana, hiki ke loaʻa ke kīnā mau loa a i ʻole ka make.
No laila, hoʻāʻo nā neurosurgeons e wehe i ka puʻupuʻu i ka hiki ke hiki me ka ʻole o ka hōʻeha ʻana i ka mea maʻi.
ʻAʻole pane maikaʻi ka maʻi kanesa Chordoma i ka radiation therapy a me ka chemotherapy, no laila ʻaʻole hoʻohana pinepine ʻia kēia mau mea ma ke ʻano he lāʻau lapaʻau mua. Eia nō naʻe, hāʻawi ʻia ka radiation therapy ma hope o ke ʻoki ʻana e luku i nā hunaola kanesa i koe a hōʻemi i ka pilikia o ka hoʻi hou ʻana mai o ke kanesa.
Ke noiʻi nei nā kānaka noiʻi i nā lāʻau lapaʻau hou e like me ka lāʻau lapaʻau i hoʻopaʻa ʻia a me ka immunotherapy.
He aha ka wānana o ka maʻi?
ʻO "Prognosis" kahi wānana o ka hiki ke ho'ōla a me ke ola ʻana mai kahi maʻi. I ke ʻano o ka chondroma, pili kēia i kekahi mau kumu:
- ʻO kahi o ka puʻupuʻu a me ka nui i wehe ʻia i ka wā o ke ʻoki ʻana: Inā ua wehe loa ʻia ka puʻupuʻu, ʻoi aku ka maikaʻi o nā hopena.
- Inā ua pālahalaha ke kanesa (metastasized):Inā ua pālahalaha aku i nā ʻōpū mamao o ke kino, e emi iho ana ka nui o ke ola.
- Makahiki i ka wā i ʻike ʻia ai: Hiki ke haʻahaʻa iki nā hopena i ka poʻe ma luna o 60 mau makahiki.
- ʻAno maʻi ʻaʻai: ʻOi aku ka maikaʻi o nā hopena o nā ʻano maʻamau ma mua o nā ʻano ʻoi aku ka ikaika e like me "Dedifferentiated" a mākou i kūkākūkā ai.
Wahi a kekahi noiʻi, penei nā helu ola o nā maʻi chordoma:
- Ma hope o 3 mau makahiki: 80.5%
- Ma hope o 5 mau makahiki: 68.4%
- Ma hope o 10 mau makahiki: 39.2%
Akā, mai hopohopo i kēia mau helu helu. He mau awelika wale nō kēia mai kahi hui nui o nā maʻi. Hiki ke ʻokoʻa loa kāu mau hopena ma muli o kou kūlana, ke ʻano lapaʻau, a me ke ʻano o ka pane ʻana o kou kino. ʻO kāu hui lapaʻau wale nō ke hāʻawi iā ʻoe i ka ʻike maikaʻi loa e pili ana i kēia. No laila, mai makaʻu e nīnau iā lākou.
Hiki ke pale ʻia kēia maʻi? Āhea wau e ʻike ai i ke kauka?
ʻAʻohe mea hiki iā mākou ke hana e pale aku i ka ulu ʻana o ka chondroma. Loaʻa ka hapa nui o nā hihia ma ke ʻano hūpō. Inā loaʻa kekahi o kou ʻohana i ka chondroma a i ʻole ka tuberous sclerosis, he mea nui e loaʻa iā ʻoe nā nānā lapaʻau maʻamau.
ʻO ka mea nui loa, ʻo ia ka hahai ʻana i ka wā lōʻihi ma hope o ka mālama ʻana. He maʻi ʻaʻai ka Chondroma e hiki ke hoʻi hou mai i nā makahiki he nui ma hope o ka mālama ʻana. No laila, he mea nui e hele i nā nānā mau e like me ka ʻōlelo a kāu hui lapaʻau.
Inā loaʻa iā ʻoe kekahi mau hōʻailona hou a i ʻole inā e ʻoi aʻe ka ʻino o kāu mau hōʻailona, e ʻike koke i kāu kauka.
He mea maʻamau ke makaʻu a me ke kaumaha ke lohe ʻoe e pili ana i kahi maʻi kanesa laha ʻole. Akā e hoʻomanaʻo, e hana pū kāu hui lapaʻau me ʻoe e hoʻomohala i ka hoʻolālā lapaʻau maikaʻi loa nāu a hana i kā lākou mea maikaʻi loa e hoʻomaikaʻi i kou ʻano ola.
Leka Lawe-Home
- He ʻano maʻi ʻaʻai laha ʻole ka Chordoma e ulu ana i loko o nā iwi o ka iwi kuamoʻo a i ʻole ke kumu o ke poʻo.
- Aia nā hōʻailona ma ke wahi o ke kanesa a hiki ke komo pū me ke poʻo ʻeha, ka ʻike pālua, ka ʻeha kua, a me ka maneʻo o nā lālā.
- ʻO ke ʻano lapaʻau nui, ʻo ia ka wehe ʻana i ka puʻupuʻu me ke ʻoki kino, akā hiki ke paʻakikī loa kēia ma muli o kona wahi.
- ʻOiai ma hope o ka mālama ʻia ʻana, aia ka pilikia o ka hoʻi hou ʻana o ke kanesa, no laila he mea nui ka nānā ʻana me kāu kauka i ka wā lōʻihi.
- Mai hopohopo i nā helu helu. He ʻokoʻa kēlā me kēia maʻi. E kamaʻilio me kāu hui lapaʻau no ka ʻike pololei loa e pili ana i kou kūlana.
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