Kua rongo koe i te mate pukupuku onge e kiia nei ko Chordoma? Me kōrero tātou mōna!

Kāore pea koe i rongo i tēnei ingoa "chordoma" i mua. Kāore i te miharo, nā te mea he momo mate pukupuku tino onge tēnei. Heoi, ahakoa he onge, he mea nui kia mōhio koe ki tēnei. Nā te mea, ka puta pea tēnei momo pukupuku i roto i tō tātou tuaiwi, i te pūtake rānei o te angaanga. Nō reira, i tēnei rā, me kōrero taipitopito, me te tino māmā hoki mō te aha tēnei chordoma, me pēhea te whanaketanga, he aha ngā tohu, me ngā maimoatanga.

He aha te Chordoma? Kia mārama tātou!

I te whakarapopototanga, he pukupuku matepukupuku te chordoma e puta mai ana i roto i ngā wheua . Ko te nuinga o te wā ka puta mai i roto i tō tuaiwi, i te pūtake rānei o tō angaanga, arā, ngā wheua i runga ake i tō kaki me raro iho i tō roro. Ka whakarōpūhia e ngā tākuta hei momo matepukupuku e kiia nei ko te sarcoma. Ko te sarcoma he kupu whānui mō ngā matepukupuku e puta mai ana i roto i ngā wheua me ngā kiko ngohengohe (ngā kiko honohono).

He puku puhoi te tipu o ngā chordoma. Heoi, ko te raruraru he uaua ki te rongoā nā te mea kei te tata tonu ki tō tātou pūnaha io, arā, te roro me te taurakira, ā, ka uru ki ngā kiko ngawari e karapoti ana i a rātou.

Ko tētahi atu mea, ahakoa i muri i te maimoatanga, he nui te tūponotanga ka hoki mai anō ēnei pukupuku. I te nuinga o te wā, ka puta tēnei i te wāhi kotahi i noho ai te pukupuku taketake. Waihoki, i roto i te 30% ki te 40% o ngā take, ka horapa ngā pūtau matepukupuku chordoma ki ētahi atu wāhanga o te tinana. Ka kiia tēnei e ngā tākuta he "metastasizing".

Kei hea te horapa o te Chordoma ki ētahi atu wāhanga o te tinana?

Mena ka horapa te chordoma ki ētahi atu wāhanga o te tinana, ko ngā wāhi tino horapa ko:

• Ō pūkahukahu
• Ngā kōpuku lymph e tata ana ki te pukupuku
• Ētahi atu wheua
• Ate
• Kiri

Kei hea te whanaketanga o te chordoma?

Ka taea e te chordoma te puta ki ngā wāhi katoa o tō tuaiwi, engari e toru ngā wāhi e tino kitea ana:

1. Te sacrum: Koinei te wheua tapatoru i waenganui i ō papa. Tata ki te 35% o ngā chordoma ka puta i konei.

2. Turanga angaanga: Ina koa, kei te turanga o tō angaanga, i roto i ngā wheua e tautoko ana i tō roro. Ka kiia hoki ēnei ko ngā "Clival chordomas" nā te mea he maha tonu te wā ka hangaia i roto i te wheua "Clivus", kei konei. E 35% hoki o ngā chordomas katoa tēnei momo.

3. I roto i ngā tuaiwi neke o te tuaiwi (`vertebrae`): Arā, ko ngā tuaiwi i roto i tō kaki, uma, me te tuara. Ka puta ngā chordoma i roto i te 30% o ēnei. Ko te nuinga o ēnei ka puta i roto i te tuaiwi tuarua o te kaki. Ka taea hoki te puta i roto i ngā tuaiwi i te tuara o raro (tuara lumbar) me te uma (tuara thoracic).

He aha ngā momo matua o te chordoma?

Kua wehea e te Whakahaere Hauora o te Ao (WHO) te chordoma kia toru ngā momo matua. Ko ēnei whakarōpūtanga e hangai ana ki te āhua o ngā pūtau matepukupuku i raro i te karuārai ('histology').

1. Chordoma tawhito/tikanga: Koinei te momo tino noa (80% ki te 90% o ngā chordoma katoa). Ko ngā pūtau o tēnei momo he momo pūtau motuhake he āhua "mirumiru" te āhua. Ko te chondroid chordoma tētahi atu momo o tēnei momo. Kei waenganui i te 5% me te 15% o ngā chordoma katoa. Ko te chondroid chordoma te nuinga o te wā ka puta i te pūtake o te angaanga.

2. Te chordoma kua wehea te rerekētanga: He momo tino onge tēnei (iti iho i te 5%). He ranunga pūtau rerekē tōna e tohuhia ana. He tere ake te tipu o tēnei momo, he kaha ake te riri, ā, he nui ake te tūponotanga ka horapa ki ētahi atu wāhanga o te tinana i ētahi atu momo.

3. Chordoma kāore i te tino rerekē: He tino onge hoki tēnei. Neke atu i te 60 ngā tūroro kua tuhia ki ngā pūkete hauora tae noa mai ki tēnei wā. Ko tētahi āhuatanga motuhake o tēnei momo ko te whakakorenga (te mukunga) o tētahi ira e kiia nei ko `(SMARCB1)`, `(INI1)` rānei. Ko tēnei momo chordoma ka kitea pinepinetia i roto i ngā tamariki me ngā taiohi.

Ko wai te mea tino tūpono ka pāngia e te chordoma?

Ka taea te pā te chordoma i ngā tau katoa, i roto i te tangata katoa. Heoi, ko te nuinga o te wā ka pā ki ngā pakeke i waenga i te 50 me te 80 tau. He iti noa ngā take e pāngia ana e ngā tamariki, tata ki te 5% o ngā take katoa.

Kua kitea hoki ko te nuinga o ngā tāne he 1.5 ngā wā ka nui ake te tūponotanga ki te pāngia e te chordoma i ngā wāhine.

He pēhea te noa o tēnei?

He mate pukupuku tino onge te Chordoma. Tata ki te kotahi i roto i te miriona tāngata ka pāngia e ia i ia tau. Ko te tikanga, hei tauira, i te Hononga o Amerika, tata ki te 300 noa iho ngā kēhi hou ka kitea i ia tau.

Kei waenganui i te 1% me te 4% o ngā pukupuku wheua tuatahi katoa ngā chordoma.

He aha ngā tohu o te chordoma?

I te tipu haere o te chordoma, ka taea e ia te pēhi i te taurakira, i te roro rānei e karapoti ana. Ka puta ngā tohu i tēnei pēhanga . Ka rerekē anō hoki ngā tohu i runga i te wāhi kei reira te pukupuku i roto i te tuaiwi.

Ko ngā tohu noa o te chordoma ko te mamae, te ngoikore, me/te māuiui rānei i te tuara, i ngā ringa, i ngā waewae rānei .

Ngā āhuatanga o te chordoma turanga angaanga:

Mena he chordoma kei te pūtake o tō angaanga, kei raro i tō roro, ka pāngia pea koe e ngā tohu penei:

• Te tirohanga takirua (Diplopia)
• Te tirohanga pōuri
• Ānini
• Te māuiui, te mamae rānei o te kanohi

Ngā āhuatanga o te chordoma i roto i te wheua hiku/sacrum:

Mena he chordoma tōu i te pito o raro o tō tuaiwi, e tata ana ki te sacrum, ka pāngia pea koe e ngā tohu penei:

• He puku, he puku rānei e puta mai ana i roto i te kiri
• Te uaua ki te mimi, ki te tutae rānei (te ngoikore o te pūkahukahu, te whēkau rānei)
• Te mamae i te tuara o raro, i te papa rānei

Kia maumahara, i ētahi wā ka pōhēhētia ēnei tohu ki ētahi atu mate hauora noa. Koia te mea nui kia rapu tohutohu hauora mēnā kei a koe ētahi tohumate pumau, rerekē hoki.

He aha te take e whanake ai te Chordoma? He aha ngā take?

Kāore anō kia tino mōhiotia e ngā kairangahau te take o te chordoma, engari e whakapono ana rātou kei roto ngā whakarerekētanga ira i roto i tētahi ira e kiia nei ko te TBXT.

Kua puta ngā pūrongo mō ētahi whānau he chordoma. I te whakamātautau i a rātou, i kitea kua riro mai i a rātou te tāruarua o te ira `(TBXT)`. Waihoki, kua kitea ngā panoni o te ira `(TBXT)` i roto i te hunga he chordoma engari kāore he tangata o te whānau e pāngia ana e te mate.

Ka whanake te Chordoma mai i ngā pūtau i roto i tētahi hanganga e kiia nei ko te "notochord." He hanganga rangitahi tēnei "notochord" he mea tino nui mō te whanaketanga o te taurakira o te kukune i te wā e whanake ana. I te nuinga o te wā, ka ngaro tēnei "notochord" i te waru wiki pea o te haputanga. Heoi, i roto i te tokoiti o te tangata, ka noho pea ētahi o ēnei pūtau "notochord" ki roto i ngā wheua o te tuaiwi, i te pūtake rānei o te angaanga.

Nō reira, ko te tirohanga o nāianei, mēnā he huringa kei roto i te ira `(TBXT)` i whakahuatia i mua ake nei, ka tīmata pea ēnei pūtau `(notochord)` e toe ana ki te tipu rerekē, ka hanga he chordoma.

Waihoki, ko te hunga whai mate ira e kiia nei ko te "Tuberous sclerosis" kei te nui ake te mōrearea ki te whakawhanake i te chordoma. Ka taea e tēnei mate "Tuberous sclerosis" te whakararu i te mate haurangi, te whakaroa i te whanaketanga, me ngā pukupuku i ngā wāhanga rerekē o te tinana. Ka puta tēnei i ngā whakarerekētanga ira i roto i ngā ira e rua e kiia nei ko te "TSC1" me te "TSC2".

Me pēhea te mohio ki te chordoma?

Mena kei a koe ngā tohu o te chordoma, ka pātai tuatahi te tākuta mō ō tohu me tō hītori hauora. Kātahi ka whakahaerehia he whakamātautau tinana me te whakamātautau io.

Ki te whakapae te tākuta he pukupuku kei roto, ka tonoa e ia he whakamātautau whakaahua pēnei i te hihi-X, te matawai rorohiko (CT), te matawai MRI rānei. He maha ngā wā ka āwhina tēnei matawai MRI ki te tautuhi i te chordoma.

Kātahi ka tukuna pea koe e tō tākuta ki tētahi tohunga mate pukupuku wheua hei whakaū i te mate me te tiki whakaaro tuarua. Tērā pea ka whakahaerehia e rātou ētahi atu whakamātautau whakaahua hei whakatau i te wāhi tika o te chordoma, hei tirotiro mēnā kua horapa ki ētahi atu wāhanga o te tinana, me te whakahaere i ētahi atu whakamātautau.

Heoi, ko te huarahi anake hei tautuhi i te chordoma ko te whai i tētahi koiora . Ko te tikanga o tēnei ko te tango i tētahi tauira iti o te puku, mā te whakamahi i tētahi koiora ngira, ka tirotirohia i raro i tētahi karu hiko. Ko reira anake ka taea e te tohunga te tino mōhio mēnā he chordoma.

He aha ngā maimoatanga mō te Chordoma?

Ko te maimoatanga matua me te maimoatanga pai rawa atu mō te chordoma ko te tango i te pukupuku katoa mā te pokanga . Ka kiia tēnei e ngā tākuta ko te "En bloc resection." Mena ka tangohia katoatia te pukupuku i tēnei ara, ka roa te ora o te tūroro.

Heoi, i runga i te wāhi kei reira ngā pukupuku, ka tino uaua pea tēnei mahi. Ina koa, he maha ngā wā kāore e taea te tango katoa i ngā chordoma kei te pūtake o te angaanga.

Nā te mea ka taea e te chordoma i roto i te tuaiwi te kino i tō taurakira me ngā io nui me ngā oko toto e karapoti ana. Mēnā ka pakaru tēnei i te wā o te pokanga, ka taea te whakararuraru mō te wā roa, te mate rānei. Waihoki, he uaua ki te tango katoa i te chordoma i te pūtake o te angaanga nā te mea he tata rawa ki te take roro, ki ngā io angaanga, me te taurakira. Ka ngana ngā taote pokanga roro ki te tango i te nuinga o te pukupuku e taea ana, me te mea he haumaru tonu.

Kāore e pai te urupare a ngā chordomas ki te rongoā irahiko, ki te chemotherapy rānei hei maimoatanga matua. Heoi, i muri i te pokanga, ka tūtohu pea tō tīma hauora i te rongoā irahiko hei ārai i te hokinga mai o te pukupuku.

Kei te rangahau ngā kairangahau i ngā maimoatanga hou mō te chordoma, pērā i te rongoā arotahi me te rongoā ārai mate. Tērā pea he whakamātautau haumanu ka taea e koe te whai wāhi atu.

Ka taea te ārai i te chordoma?

He pono, kāore he mea e taea te mahi hei aukati i te whanaketanga o ngā chordoma. I te nuinga o te wā, ka whanake noa iho.

Heoi, mēnā kua pāngia tētahi o tō whānau e te Chordoma, mēnā rānei he mate tōu e kīia nei ko te "Tuberous sclerosis", he mea nui kia toro atu koe ki te tākuta i ia wā mō ngā tirotiro. Kātahi ka taea e rātou te aroturuki i a koe mō ngā tohu o te Chordoma. Ko te wawe o te tautuhi i tēnei, ko te nui ake o te tūponotanga ka angitu te maimoatanga.

He aha ngā tūponotanga ka ora mai i te chordoma? (Te matapae)

Ko te matapae, te tirohanga rānei, mō te chordoma e whakawhirinaki ana ki ētahi āhuatanga:

• Te wāhi o te puku me te nui ka taea te tango mā te pokanga: Mena ka taea te tango katoa i te puku, he nui te tūponotanga ka ora. Mena ka whakamahia noa ētahi atu maimoatanga me te kore pokanga, he iti te tūponotanga.
• Mena kua horapa te mate pukupuku ki ētahi atu wāhanga o te tinana (kua horapa): Mena kua horapa ki ngā wāhi tawhiti, ka heke pea te maha o ngā oranga.
• Tō tau ina tātaritatia: I te nuinga o te wā, he iti ake te reiti oranga mō te hunga neke atu i te 60 tau te pakeke.
• Ahakoa kua wehea te pūtau mai i te pūtau matua, kāore rānei: He kino ake te āhua o te mate mō ngā momo pēnei i te "Poorly differentiated chordoma" i te "conventional chordoma".

Ka taea e tō tīma hauora te hoatu ki a koe ngā kōrero tino tika mō ngā mea hei tumanakohia i runga i tō āhua, nō reira kaua e wehi ki te pātai atu ki a rātou.

Tērā pea ka mate tēnei?

Ae, ka mate pea te chordoma. I te nuinga o te wā, ka puta te mate i muri i te hokinga mai o te pukupuku, ka whakangaro i ngā kiko i roto i tō taurakira, tō roro, tō kakau roro rānei.

I roto i tētahi rangahau i mahia ki te 357 o ngā tūroro chordoma, i kitea ko ngā reiti oranga penei:

• I muri i ngā tau e toru: 80.5%
• I muri i ngā tau e rima: 68.4%
• Tekau tau i muri mai: 39.2%

Engari kia maumahara, he toharite noa iho ēnei. Ka taea e tō tīma hauora te whakarato i ētahi atu kōrero taipitopito mō ngā reiti oranga i runga i tō āhuatanga motuhake.

He matepukupuku te Chordoma, he puku noa rānei?

He tino kino (he mate pukupuku) te Chordoma. Kāore tētahi o ōna momo e kiia ana ehara i te mate pukupuku.

Āhea ahau me toro atu ki te tākuta?

Ahakoa i muri i te maimoatanga, ka hoki anō pea te chordoma, ahakoa i muri i ngā tau maha. Nō reira, he mea nui te tirotiro tonu me tō tīma hauora mō te wā roa.

Ki te puta he tohu hou ki a koe, ki te kino haere rānei ō tohu o nāianei , me kōrero koe ki tō tākuta.

Hei whakamutunga, ētahi mea hei maumahara (Karere hei tango ki te kāinga)

He mea noa te mataku me te ahotea ina rongo koe he mate pukupuku wheua onge tōu. He mate pukupuku te chordoma e uaua ana ki te rongoā nā tōna wāhi.

Heoi anō, me whakawhirinaki koe ka waihangahia e tō tīma hauora he mahere maimoatanga taipitopito e hāngai ana ki a koe, ā, ka āwhina i a koe ki te rongoā i tō chordoma me te whakapai ake i te kounga o tō oranga .

• He mea nui kia mōhio wawe koe ki ngā tohu: rapu tohutohu hauora mēnā kei te mamae tonu koe, kei te ngoikore, kei te rerekē rānei te tirohanga.
• Rapua he tohutohu hauora mā te tohunga: Nā te mea he mate onge te chordoma, he mea tino nui kia rapu maimoatanga mai i tētahi tīma hauora mātau.
• Ahakoa kua oti te maimoatanga, me whai tonu ngā tirotiro hauora: Nā te mea kei te tūpono te hokinga mai o te mate, me haere ki ngā tirotiro hauora e ai ki ngā tohutohu a ngā tākuta.

Ko tāku tumanako ka kitea e koe he whai hua ēnei mōhiohio. Mēnā he pātai āu, kaua e mangere ki te pātai atu ki tō tākuta.

` Chordoma, mate pukupuku, mate pukupuku wheua, tuaiwi, angaanga, sacrum, clivus