He pukupuku onge tōu i roto i tō pūnaha io? (Malignant Peripheral Nerve Sheath Tumor - MPNST) Me ako tātou mō tēnei.

Kua rongo koe i tētahi puku i tētahi wāhi o tō tinana, i te ringa, i te waewae rānei, e tipu haere ana? Ko ēnei puku, ka tīmata i ētahi wā he iti noa iho pērā i te pī, ā, ka tipu haere pērā i te karaka, koinei ngā mea ka kōrerohia e tātou i tēnei rā. He mate kino tēnei, engari he tino onge. Ka kiia ko te pukupuku pukupuku io taha kino, ko te MPNST rānei te poto.

He aha te pukupuku pukupuku io taha kino (MPNST)?

Ki te whakarapopototanga, ko te MPNST (Malignant Peripheral Nerve Sheath Tumor) he pukupuku matepukupuku tino onge e tupu ana i roto i ngā hipoki tiaki (ngā hipoki io) e karapoti ana i ngā io o tō tinana. Nō roto ēnei i tētahi momo sarcoma kiko ngohengohe . Ka puta ake i roto i tō pūnaha io peripheral . Whakaarohia, ka taea e koe te whiwhi i ēnei pukupuku i ō ringaringa me ō waewae. Ehara i te mea koinā anake, i ētahi wā ka taea hoki e rātou te tupu i roto i te pelvis, te puku, te māhunga, me te kaki. Ka taea te whakaora i ēnei pukupuku mā te tango i a rātou mā te pokanga. Heoi, me mahara hoki tātou i ētahi wā ka hoki mai anō ēnei pukupuku.

E hia te onge o te MPNST?

He tino onge tēnei mate. Tata ki te kotahi i roto i te 100,000 tāngata ka kitea he pukupuku kino i roto i te pūkahu io taha (MPNST) i ia tau. I te nuinga o te wā ka pāngia te hunga i waenga i te 30 me te 50 tau te pakeke .

Hei tāpiritanga, ko te hunga whai mate ira e kiia nei ko te Neurofibromatosis momo 1 (NF1) ka nui ake te tūponotanga ka pāngia e te MPNST. Kua kitea kei waenganui i te 25% me te 50% o te hunga whai MPNST he NF1 anō hoki .

I te nuinga o te wā, ka tere ake te whanaketanga o te MPNST i roto i te hunga whai NF1 i ērā kāore he NF1. Waihoki, he nui ake te tūponotanga o te whanaketanga o te MPNST e ngā tāne whai NF1 i ērā kāore he NF1.

He aha ngā tohu o te MPNST?

Ka taea e ngā MPNST te whanake i ngā wāhi katoa o ō io taha, engari ko te nuinga o te wā ka pā ki ngā wāhi pēnei i ō ringaringa me ō waewae. I ētahi wā ka taea hoki e rātou te whanake i ngā wāhi pēnei i tō hope, tō uma, tō puku, tō upoko me tō kaki rānei. Ko ngā tohu o ngā MPNST ko:

• He puku e tupu pōturi ana i raro i te kiri. Ka taea e ēnei puku te iti pērā i te pī (tata ki te 2 henimita) te rahi rānei pērā i te karaka (tata ki te 10 henimita).
• Te mamae (ina koa mēnā kei a koe te NF1).
• Te ngoikore (Paresthesia).
• Te ngoikore o ngā ringa me ngā waewae.

He aha ngā take o te MPNST?

Kua whakaatuhia e ngā rangahau e 50% o ngā pukupuku kino o te pukupuku io taha ka puta mai i te neurofibromatosis momo 1 (NF1).Ka karangatia te āhuatanga. Ko ētahi atu take:

• Whakaora irahiko: Tata ki te 10% o te hunga whai MPNST kua whiwhi i te rongoā irahiko mō ētahi atu mate.
• Ngā whakarerekētanga ira: Kua kitea e ngā kairangahau he maha ngā whakarerekētanga ira e meinga ai ngā pūtau pūkahu io noa kia huri hei pūtau rerekē, kia whakanuia, kia hanga pukupuku.
• Ētahi momo neurofibroma: Ko te hunga whai plexiform neurofibroma he nui ake te mōrearea ki te whakawhanake i te MPNST.

Me pēhea te tātaritanga o te MPNST?

Ina kite koe i tētahi tākuta, ka tirotirohia e ia tō tinana, ka pātai atu mō tō hauora whānui. Ka uru atu ki tēnei te pātai mō tō hītori hauora, tō hītori hauora whānau, me ngā tohumate e pā ana ki a koe. Hei tāpiri, ka mahi pea rātou i ēnei e whai ake nei:

• Ngā whakamātautau whakaahua: Ka whakahaerehia pea e ngā tākuta ngā whakamātautau pēnei i te MRI (Magnetic Resonance Imaging) me ngā matawai PET (Positron Emission Tomography) .
• Biopsy: Ka taea e te tākuta te mahi i te biopsy, ka tango i tētahi tauira kiko ka tirotirohia i raro i te karuārai e te tohunga mate .
• Ngā whakamātautau ira: Mena he pukupuku kino tōu i roto i te pūkahu io taha, ka tūtohu pea tō tākuta kia whakamātauria he whakamātautau ira hei tirotiro mēnā kei a koe, kei tētahi mema o te whānau tata rānei te momo neurofibromatosis momo 1 (NF1) me tētahi atu momo pukupuku pūkahu io, arā , te momo neurofibromatosis momo 2 (Schwannomatosis) .

He aha ngā maimoatanga mō te MPNST?

I te nuinga o te wā ka whakahaerehia e ngā tākuta he pokanga hei tango i te pukupuku kino o te taupoki io ​​taha. Heoi, tera etahi wā kāore e taea te pokanga. Hei tauira:

• Ngā nati nui (ngā nati 5 cm te rahi, nui ake rānei).
• Ngā pukupuku metastatic.
• Ka taea te pakaru i ngā pukupuku e tata ana ki ngā whatunga io matatini i te wā e pokanga ana.

I ēnei āhuatanga, ka rongoā pea ngā tākuta i te MPNST mā te whakamahi i te huinga o te pokanga, te chemotherapy , te radiation therapy rānei. Ka taea te hoatu i te radiation therapy i mua atu, i muri rānei i te pokanga.

Kei te tirotirohia e ngā kairangahau mēnā ka taea te whakamahi i te rongoā ārai mate , i te rongoā arotahi rānei hei maimoatanga hou. Mena he pukupuku kino tōu i roto i te pūkahukahu io taha, tera pea ka āhei koe ki te whai i tētahi whakamātautau haumanu e whakamātautau ana i ngā maimoatanga hou.He mea pai pea te kōrero ki tō tākuta mō te whai wāhi atu.

He aha ngā raruraru pea, ngā pānga taha rānei o te maimoatanga?

Ko ngā raruraru ka puta i te wā o te pokanga ko:

• Ngā urupare ki te rongoā whakamoe whānui.
• Te toto nui rawa (te toto whakaheke).
• Mamae.
• Ngā koha pokanga.
• Mate pāwera o te patunga pokanga.

Ka pā mai pea ngā pānga taha pēnei i te chemotherapy, te radiation therapy rānei i ngā maimoatanga pēnei i:

• Te korere.
• Te ngenge.
• Whakapairuaki me te ruaki.

He aha te āhua o te mate mō te tangata whai MPNST?

Ko te matapae ko te whakaaro o tō tīma hauora mōu i muri i tō otinga o te maimoatanga. Mō te MPNST, ka whakatauhia tēnei matapae e ētahi āhuatanga:

• Tūnga NF1: Ina puta ēnei pukupuku i roto i te hunga whai NF1, tera pea he iti ake te matapae mō te ora i tērā o te hunga kāore he NF1.
• Te taumata o te pukupuku: Ka tirohia ngā pūtau e ngā tākuta mate pukupuku i raro i te karuārai, ā, ka whakarōpūtia ngā pukupuku hei taumata teitei , hei taumata iti rānei. He nui ake te tūponotanga o ngā pukupuku taumata teitei ki te whai pūtau matepukupuku e tere wehewehe ana, e horapa ana hoki.
• Rahi o te puku: Ka taea e ngā puku MPNST te rahi ki te 10 henimita. He uaua te tango i ngā puku nunui mā te pokanga.
• Metastasis: Mena kua horapa te pukupuku ki ētahi atu wāhi i tīmata mai ai, tera pea he uaua ki te rongoā.

E kite ana koe, he maha ngā āhuatanga ka pā ki ō tūmanakohanga whakaora, ā, kāore pea ēnei āhuatanga katoa e pā ki a koe. Nō reira, he pai ake te pātai atu ki tō tākuta mō ngā taipitopito tika mō tō āhuatanga. Nā te mea e mōhio ana ia ki tō āhuatanga, ka taea e ia te hoatu ki a koe ngā mōhiohio e hiahiatia ana e koe.

He aha ngā reiti oranga mō te MPNST?

Ko ngā tatauranga mō te oranga he whakatau tata i runga i ngā wheako o ētahi atu kua pāngia e ngā pukupuku kino o te taupoki io ​​taha. Nā te mea he tino onge ēnei pukupuku, he uaua ki ngā tohunga te tuku i ngā tatauranga tika. E ai ki te National Cancer Institute (US), kei waenganui i te 23% me te 69% o te hunga whai MPNST e ora ana i ngā tau e rima i muri i te tātaritanga. He whānuitanga nui tēnā, kāore? Nō reira , he pai ake te pātai atu ki tō tākuta mō tō āhuatanga.

Me pēhea taku tiaki i ahau anō?

Mena he pukupuku kino tōu i roto i te pūkahukahu io taha, kei te tūtaki koe ki tētahi mate pukupuku onge ka hoki mai anō i muri i te maimoatanga. He maha ngā kaupapa hei āwhina i a koe i roto i tēnei āhuatanga:

• Te tiaki mamae:I roto i te tiaki whakaora, ka mahi tahi koe me tētahi rōpū tākuta kua whakangungua motuhake hei āwhina i a koe ki te whakahaere i ngā tohu o te MPNST me ngā pānga taha o te maimoatanga. Heoi anō, ka tautokohia koe e rātou e te hinengaro.
• Ngā kaupapa oranga mō te mate pukupuku: He rite te mate pukupuku ki tētahi haerenga. Mā ngā kaupapa oranga mō te mate pukupuku koe e ārahi mai i te rā i kitea ai tō mate, tae noa ki tō maimoatanga, me te aha hei mahi mēnā ka hoki mai anō te mate pukupuku.

I te tirohanga tuatahi, ko te pukupuku pukupuku io taha kino (MPNST) i roto i tō ringa, i tō waewae rānei, he rite ki te puku ka taea te whara, te maru rānei. He ohorere te kitenga he momo mate pukupuku onge te puku, ā, me pokanga. He uaua ki te mārama. Mēnā he pātai āu mō tō āhua, mō ngā mea rānei hei tumanako atu, e mārama ana tō tīma hauora. Ka koa rātou ki te whai wā ki te whakautu i ō pātai me te aro atu ki ō āwangawanga.

Ko te karere kawe kāinga mai i tēnei tuhinga

Āe, ko tāku tumanako kei a koe ētahi māramatanga mō tēnei mate pukupuku onge e kiia nei ko te MPNST i kōrerohia e tātou i tēnei rā. Kia maumahara, he tino onge tēnei mate. Mena he puku rerekē, he mamae, he ngoikore, me ētahi atu mea kei tō tinana e mau tonu ana, me toro atu ki te tākuta me te rapu tohutohu. Ko te wawe o te kitenga, ko te māmā ake o te rongoā.

Ko te mea nui, kaua e noho mokemoke koe. Kei reira tō tīma hauora, tō whānau, me ō hoa katoa hei āwhina i a koe. Ko te mea nui, kia kaha tonu koe, kia whai hoki i ngā tohutohu a tō tākuta.

` Puku pukupuku kino o te hipoki io ​​taha, MPNST, mate pukupuku io, pukupuku, mate pukupuku, neurofibromatosis, NF1, pokanga, rongoā irahiko, chemotherapy