Kua puta he puku rerekē ki tāu tamaiti? Me kōrero tātou mō te Rhabdomyosarcoma

He mea noa te mataku nui ina kite koe i tētahi mea rerekē, pērā i te puku, i te pupuhi rānei, i tō tinana, i te tinana rānei o tāu tamaiti. I ēnei wā, he maha ngā mea e whakaarohia ana e tātou. I tēnei rā ka kōrero tātou mō tētahi momo mate pukupuku pērā pea, engari he onge noa iho. Ko te rhabdomyosarcoma tēnā. Ahakoa he ahua uaua te ingoa ina rongo koe, me kōrero noa iho.

He aha te Rhabdomyosarcoma?

Ki te whakarapopoto, ko te rhabdomyosarcoma he momo mate pukupuku e whanake ana i roto i ngā kiko ngohengohe o tō tātou tinana. Ko te nuinga o te wā ka pā ki ngā uaua e piri ana ki tō tātou angaanga (e kiia nei ko ngā uaua angaanga). He mea tino noa i roto i ngā tamariki me ngā taiohi , engari ka pā hoki ki ngā pakeke. E kiia ana kei waenganui i te 400 me te 500 ngā tāngata i te United States e kitea ana tēnei mate i ia tau. Ko te tikanga he mate pukupuku tino onge . He rerekē ngā momo rhabdomyosarcoma. Ko ētahi momo he tino kaha, arā, ka tere te horapa, ā, he uaua ki te rongoā. Ki te pai te maimoatanga, i ētahi wā ka ngaro katoa te mate (e kiia nei ko te whakamāmā). Heoi, i ētahi wā ka hoki mai te mate pukupuku (e kiia nei ko te hokinga mai o te mate pukupuku).

He aha ngā momo matua o tēnei mate?

He maha ngā momo matua o te rhabdomyosarcoma. Me titiro tātou ki ēnei:

1. Rhabdomyosarcoma o te kukune `(Rhabdomyosarcoma o te kukune)`

Koinei te momo tino noa . Ka pā ki ngā tamariki, kaua ki ngā pakeke. I te nuinga o te wā ka pā ki ngā wāhi huri noa i te mahunga me te kaki. Hei tauira, i roto i ngā kiriuhi e hipoki ana i te roro me te poka kanohi (te wāhi e totohu ana te kanohi). He momo anō hoki. Ka taea e ētahi te whanake i roto i ngā whekau tuwhera pērā i te pūkahukahu me te tara (e kiia nei ko te "Botryoid Rhabdomyosarcoma"). Ka taea e tētahi atu momo te whanake huri noa i ngā testicles (ngā parāoa) o te tamaiti (e kiia nei ko te "Spindle Cell Rhabdomyosarcoma").

2. Rhabdomyosarcoma Alveolar `(Rhabdomyosarcoma Alveolar)`

Ko te nuinga o te wā ka kitea tēnei momo i roto i ngā tamariki pakeke me ngā taiohi, i waenga i te 20 me te 35 tau te pakeke. Ko te nuinga ka puta ki ngā ringa, ki ngā waewae, ki te tinana rānei. He tino kino tēnei momo mate pukupuku, ā, ka tere te horapa . Ka tīmata te horapa tata tonu i muri i te whanaketanga.

3. Te Rhabdomyosarcoma Pleomorphic `(Te Rhabdomyosarcoma Pleomorphic)`

Ko te nuinga o te wā ka kitea tēnei momo i roto i ngā pakeke neke atu i te 50 tau te pakeke. Ahakoa ka taea te whanake i ngā wāhi katoa o te tinana, ko te nuinga ka kitea i ngā waewae . Ka taea hoki te whanake i ngā ringa, te uma, te puku, me ētahi wāhanga o te māhunga me te kaki.

He aha ngā tohu o te rhabdomyosarcoma?

He rerekē ngā tohu o tēnei mate i runga i te wāhi kei reira te mate pukupuku . Hei tauira, ki te mea he pukupuku pēnei kei roto i te taringa o te tamaiti, ka pāngia pea rātou e ngā tohu pēnei i te mamae o te taringa me te wai e rere ana mai i te taringa. Ki te puta he pukupuku i muri i te kanohi, ka puta pea te kanohi he pupuhi, he pupuhi hoki. Anei ētahi atu tauira:

• Mēnā he uaua kei te ringa, kei te waewae rānei: he puku, he pupuhi rānei e haere tahi ana me te mamae.
• Puku (`(Puku)`): mamae o te puku , mate kōroke, ruaki .
• Te pūkahukahu me te ara mimi: He toto i roto i te mimi (`(Hematuria)`), he uaua ki te mimi.
• Te pūngao ihu: He rite ngā tohu ki te toto ihu (`(Epistaxis)`), ngā mate sinus (`(Sinus Infection )`).
• Tenetene: He mea rite ki te puku e puta mai ana i te tenetene o te pēpi.
• Ngā pona o te kōpū : He puku e tere tipu ana i te taha o ngā kōpū o te tamaiti.

He mea nui: I ētahi wā ka puta mai ēnei tohu i ngā mate kāore i te tino kino. Ko ngā mea pēnei i te toto ihu, te ruaki, me ngā puku i roto i te tinana, ehara i te mea nā te rhabdomyosarcoma i ngā wā katoa. Heoi, ki te pāngia koe, tāu tamaiti rānei e ēnei tohu, ki te mau tonu, ki te kino haere rānei, me toro atu koe ki te tākuta .

He aha ngā pūtake o tēnei mate?

Ko te rhabdomyosarcoma ka puta mai i ngā whakarerekētanga ira i roto i ō tātou pūtau uaua (ngā pūtau uaua kāore anō kia pakari) ka meinga kia mate pukupuku, kia tere te wehewehe, ka hanga he pukupuku. Ko ētahi whakarerekētanga ira, pērā i te ira whakakotahitanga PAX/FOX01, ka taea te whakaputa i ētahi momo rhabdomyosarcoma. Waihoki, ko te hunga whai mate tuku iho he nui ake te mōrearea ki te whakawhanake i te mate. Ko ētahi o ēnei mate ko:

• Te mate Li-Fraumeni
• Te mate Beckwith-Wiedemann
• Neurofibromatosis
• Te mate Costello
• Te mate pukupuku ngakau `(Te mate pukupuku ngakau)`

Me pēhea te tautuhi i te rhabdomyosarcoma?

Ina kite koe, tāu tamaiti rānei i te tākuta, ka pātai tuatahi rātou mō ō tohumate. Ka pātai anō hoki rātou mēnā kei roto i tō whānau tētahi o ngā mate tuku iho kua whakahuatia ake nei, nā te mea ka taea e tēnei te hoatu whakaaro ki a koe mō tō tupono ki te pangia e te mate. Kātahi ka tirotirohia e rātou te tinana hei rapu i ngā tohu o te mate, pērā i ngā puku me te pupuhi. Hei tāpiri, ka mahia pea e rātou ēnei whakamātautau hei āwhina i te tautuhi i te mate:

• Matawai CT `(Matawai Tomography Rorohiko (CT))` matawai MRI rānei `(Matawai Whakaahua Aukume (MRI))`
• Matawai PET `(Matawai Tomography Tukunga Positron (PET))`
• Matawai wheua
• Te wero i te uaua o te hope (he whakamātautau e tangohia ai he wai iti mai i te taurakira)
• Te Kohikohi i te Huero Wheua
• He koiora (te tango i tētahi wāhanga iti o te kiko mai i te puku hei tirotiro)
• Ngā whakamātautau kiko motuhake pēnei i te immunohistochemistry
• Ngā whakamātautau cytology

Ka taea te kite i tēnei mā te whakamahi i ngā whakamātautau toto?

Kāo, kāore he whakamātautau toto tika hei tautuhi i te rhabdomyosarcoma. Heoi, ka tono pea tō tākuta mate pukupuku i ngā whakamātautau toto i muri i te tautuhi. Hei tauira, ka taea te mahi i tētahi tatau toto katoa (CBC) hei tirotiro mēnā kua horapa te mate ki te hinu wheua. Ka mahia hoki ngā whakamātautau toto i te wā e rongoatia ana hei tirotiro i te urupare a tō tinana ki te maimoatanga.

Ngā Rōpū Mōrearea Rhabdomyosarcoma

Ina pāngia ngā tamariki e te rhabdomyosarcoma, ka whakarōpūhia e ngā tākuta mate pukupuku te mate ki ngā rōpū mōrearea. E toru ngā āhuatanga matua o tēnei whakarōpūtanga: 1. Te wāhanga o te pukupuku: Ka whakamahia e ngā tākuta tētahi pūnaha e kiia nei ko te Pūnaha Whakatakotoranga TNM hei whakatau i tēnei. Ko te T e pā ana ki te rahi me te wāhi o te pukupuku, ko te N e pā ana ki te horapa o te mate pukupuku ki ngā kōpū lymph, ā, ko te M e pā ana ki te horapa o te mate pukupuku ki ētahi atu wāhanga o te tinana. 2. Rōpū haumanu: Ka whakatauhia tēnei i muri i te koiora, i te pokanga rānei. Hei tauira, ki te taea te tango katoa i te pukupuku mā te koiora, mā te pokanga rānei, ka whakarōpūtia hei Rōpū I. Kei waenga i te 1 ki te 4 ēnei rōpū. 3. Ngā huringa ira: Mena kei te kitea te whakarerekētanga ira whakakotahitanga PAX/FOX01. Ka kiia ēnei kāwai mōrearea he mōrearea iti, he mōrearea waenga, me te mōrearea teitei . Ka whakamahia e te tīma hauora o tāu tamaiti tēnei kāwai mōrearea hei whakamahere maimoatanga, hei whakatau i te tūponotanga ka hoki mai te mate pukupuku i muri i te maimoatanga, me te whakatau i ngā mea hei tumanako i muri i te maimoatanga (matapae).

He uaua te tukanga whakatau i tēnei kāwai mōrearea. Tērā pea kāore koe e mārama tonu ki ngā mōhiotanga katoa e whakamahia ana. Nō reira, kaua e mangere ki te pātai atu ki te tīma hauora o tāu tamaiti mō ētahi whakamārama . Ka koa rātou ki te whakamārama i ngā mea katoa ki a koe.

He aha ngā maimoatanga mō te rhabdomyosarcoma?

He rerekē ngā whiringa maimoatanga i runga i te momo mate. Nā te mea he mate onge te rhabdomyosarcoma, ki te pāngia koe, tāu tamaiti rānei e tēnei mate,Pātai atu ki tō rōpū hauora mēnā ka taea e koe te whai wāhi atu ki tētahi whakamātautau haumanu . Ko ēnei maimoatanga te tikanga a ngā tākuta mate pukupuku:

• Pokanga
• Te Whakaora Irahiko
• Te rongoā matū (te rongoā matū)

Ka taea te whakaora katoa i te rhabdomyosarcoma?

I ētahi wā, āe, ka taea e te maimoatanga te whakaora i te rhabdomyosarcoma . Ka kiia tēnei he "mutunga" o te mate. Ko te tikanga ka ngaro ngā tohu, ā, kāore he pūtau matepukupuku e kitea i ngā whakamātautau. I te nuinga o te wā, he pumau tonu tēnei whakaora, engari i ētahi wā ka hoki mai anō te rhabdomyosarcoma. I te nuinga o te wā, he iti ake te tūponotanga ka ora katoa ngā pakeke i tēnei mate i ngā tamariki .

He aha te roanga o te oranga o te tangata e pāngia ana e te rhabdomyosarcoma?

Kāore he tatauranga tika mō te roa o te oranga o te tangata e pāngia ana e te rhabdomyosarcoma. Heoi, ka aroturukihia e ngā kairangahau te ōrau o te hunga e ora ana i ngā tau e rima i muri i te tātaritanga o te rhabdomyosarcoma. Ko tēnei ōrau oranga ka whakawhirinaki ki ngā āhuatanga maha, tae atu ki te momo mate, te rōpū mōrearea, me te hokinga mai o te mate i muri i te maimoatanga . I te katoa, 70% o ngā tamariki e pāngia ana e tēnei mate e ora ana i ngā tau e rima i muri i te tātaritanga. Mō ngā pakeke, ko te ōrau oranga mō ngā tau e rima he tata ki te 20%.

Ahakoa tō āhua, he mea nui kia maumahara ko ēnei tatauranga oranga he whakatau tata i runga i ngā wheako o ētahi atu kua rongoatia mō te rhabdomyosarcoma. Mena kei a koe, kei tāu tamaiti rānei tēnei āhuatanga, he mea noa te hiahia ki te mōhio ki ngā āhuatanga o te heke mai. Mena koinā, ko tō tīma hauora te tangata pai hei kōrero atu mō tēnei .

Me pēhea taku tiaki i taku tamaiti me ahau anō hoki?

Ka pā nui te mate pukupuku ki tō oranga o ia rā. Kāore te Rhabdomyosarcoma i te rerekē. Mena kei a koe, kei tāu tamaiti rānei tēnei mate, tera pea ka tino pāngia koe e te ahotea me te ngenge. Anei ētahi whakaaro hei āwhina i tēnei wā:

• Whakaarohia te Manaaki Whakaora: He uaua pea te aro atu ki ngā tohu me ngā maimoatanga o te mate pukupuku. Ko te manaaki whakaora he maimoatanga e āwhina ana ki te whakapai ake i te kounga o te oranga, mai i te whakaiti i ngā tohu ki te whakarato tautoko kare ā-roto.
• Kōrero ki tētahi Tohunga Oranga Tamariki: Ka taea e te mate pukupuku te huripokitia te oranga o te tamaiti. Ka taea e ia te tango atu i a rātou i ngā hoa me ngā mahi o ia rā. Ka taea e te noho me te mate pukupuku te noho mokemoke mō te tamaiti e pā ana ki tētahi wheako kāore e taea e ōna hoa te mārama. He kaimahi hauora motuhake ngā tohunga oranga tamariki e āwhina ana i ngā tamariki ki te aro atu ki ngā wheako hauora.
• Whakatā:Ka tino hoha te maimoatanga mate pukupuku – me te tiaki i tētahi tamaiti e pangia ana e te mate pukupuku. Mena kei te rongoatia koe, ngana ki te okioki i ngā wā katoa e hiahiatia ana, kaua i te wā e wātea ana koe. Mena kei te tiaki koe i tētahi tamaiti e pangia ana e te rhabdomyosarcoma, pātai atu ki tō tākuta mō ngā kaupapa me ngā ratonga tiaki whakatā.
• Whakaarohia te Oranga Ora o te Mate Pukupuku: Ka taea e te Rhabdomyosarcoma te hoki mai i muri i te maimoatanga. Mena kei te āwangawanga koe kei hoki mai te mate pukupuku mōu, mō tāu tamaiti rānei, pātai atu ki tō tākuta mō ngā ratonga tautoko mō te hunga e ora ana i te mate pukupuku.

Āhea ahau me whakapā atu ki taku tākuta mate pukupuku?

Mena kei te whiwhi maimoatanga koe, tāu tamaiti rānei, whakapā atu ki tō tākuta mēnā he kino ake ngā pānga taha o te maimoatanga i te mea i whakaarohia . I runga i tō āhua, kua hoatu pea e tō tākuta he tohutohu motuhake mō ngā tohu e tohu ana kei te horapa, kei te hoki mai rānei tō rhabdomyosarcoma. Kaua e mangere ki te kōrero ki a rātou mō ō āwangawanga.

He aha ngā pātai me pātai atu e au ki taku tākuta?

He mate onge te Rhabdomyosarcoma. Tērā pea kāore koe i te mōhio nui mō tēnei mate. Ahakoa kei a koe tēnei mate, kei tāu tamaiti rānei, tera pea he maha āu pātai mō ngā mea ka tūpono atu a muri ake nei. Anei ētahi pātai hei pātai atu i ēnei wā:

• He aha te momo rhabdomyosarcoma kei a au/taku tamaiti?
• He aha te whakarōpūtanga o te rōpū mōrearea?
• He aha ngā maimoatanga e taunaki ana koe?
• He aha ngā pānga taha o te maimoatanga?
• He whakamātautau haumanu kei reira ka taea e mātou te whai wāhi atu?
• He aha te āhua o te mate o taku tamaiti?
• He aha ngā ratonga tautoko kei a koutou hei āwhina i a mātou?

Hei whakamutunga, he aha ngā mea hei maumahara

He momo mate pukupuku tino onge te Rhabdomyosarcoma. Kāore anō kia mōhiotia e ngā tohunga te take e puta ai. Mena he rhabdomyosarcoma tōu, tō tamaiti rānei, tera pea ka pouri koe nā te mea kāore koe i te mōhio he aha i puta ai. E mārama ana tō tīma hauora ki tēnā. Ahakoa kāore e taea e rātou te whakamārama he aha koe, tō tamaiti rānei he rhabdomyosarcoma, ka taea e rātou te whakamārama i ngā mea pēnei i te tautuhi mate, ngā maimoatanga pea, me te kaha ki te whai wāhi atu ki ngā whakamātautau haumanu. Ka taea hoki e rātou te āwhina i a koe ki te kimi rauemi pēnei i ngā rōpū tautoko me te tiaki motuhake. Kaua e manukanuka, ehara i te mea ko koe anake. Rhabdomyosarcoma, mate pukupuku, mate pukupuku tamariki, mate pukupuku kiko ngohengohe, tohumate mate pukupuku, maimoatanga mate pukupuku, mate ira