Kua rongo koe i tēnei mate pukupuku onge e kiia nei ko te DSRCT? (Desmoplastic Small Round Cell Tumor) Me kōrero tātou mō ngā taipitopito!

I tēnei rā ka kōrero tātou mō tētahi momo mate pukupuku uaua, tino onge hoki. Ko tōna ingoa ko te Desmoplastic Small Round Cell Tumor, ko te DSRCT rānei e kīia ana e ngā tākuta. Kāore pea koe i rongo i tēnei ingoa i mua, nā te mea he mate tēnei e pāngia ana e te hunga ruarua noa iho. Engari he mea nui te mōhio ki ēnei āhuatanga mō tātou me ō tātou whanaunga.

Nā, he aha tēnei DSRCT?

Ki te kī māmā noa, he mate te DSRCT e puta ai ngā pukupuku matepukupuku tere te tipu . Kei roto tēnei i te kāwai o te sarcoma kiko ngohengohe . Ko te tikanga ka puta ēnei pukupuku i ngā wāhanga ngohengohe o tō tātou tinana kāore he wheua, pērā i te uaua, te ngako, me ngā io. Heoi, i roto i te DSRCT, ka puta te nuinga o ēnei pukupuku i roto i te kiriuhi e kapi ana i tō tātou kōhao puku (peritoneum) . Whakaarohia, he kiriuhi angiangi tēnei e tiaki ana i ngā whekau pērā i te ate me ngā whekau i roto i tō tātou puku. Nō reira, koinei te wāhi e tere wehewehe ai aua pūtau matepukupuku, ka tīmata ai te hanga pukupuku.

Ahakoa ka taea e te tangata te pāngia e tēnei mate, he maha tonu te kitea i roto i ngā tāne taitamariki i waenga i te 20 me te 30 tau te pakeke. He mea whakamiharo tēnā? He maimoatanga kei reira mō tēnei, ā, i ētahi wā ka ngaro ngā tohu, ā, ka kitea te mate i roto i ngā whakamātautau, arā, i te wā e memeha haere ana . Heoi, ko te mea pouri ko te mate kua whakaitihia i tēnei ara ka nui ake te tūponotanga ka hoki mai anō, arā, ka hoki anō .

E pēhea te onge o te ingoa o tēnei mate ko te DSRCT?

He tino onge tēnei, kāore e taea te whakaaro. Mai i te wā i kitea tuatahitia ai tēnei mate e ngā kairangahau i te tau 1989, kua pūrongohia kua pāngia te 1 i roto i te 1 piriona tāngata puta noa i te ao. Arā, ki te whakaritea ki te taupori o Sri Lanka, he uaua ki te kimi i tētahi tangata ahakoa kotahi i roto i ngā tau torutoru. He tino onge tēnei.

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He aha ngā tohu o te DSRCT?

I te nuinga o te wā, kāore ngā pukupuku e tipu ana i roto i te puku e puta ai he tohu nui tae noa ki te nui rawa, ka noho wāhi ki roto i te puku, ā, ka pā ki te pūnaha nakunaku. Heoi, he iti noa ngā tohu e kitea ana:

• Mamae puku: He mamae puku e mau tonu ana, e kino haere ana i ētahi wā.
• Te kōroke: Te uaua ki te nekeneke i te puku i ngā wā katoa.
• Korere: Ruaki.
• Puku pupuhi: Te āhua nei kua rahi, kua pupuhi hoki te puku.
• Whakapairuaki me te ruaki: Te kore hiahia kai e haere tahi ana me te whakapairuaki me te ruaki.
• Te whakahekenga taumaha kāore i te mārama: Te whakahekenga taumaha ohorere, kāore he here kai motuhake.

Titiro mai, ko ēnei āhuatanga pēnei i te mate puku, te korere, me te whakapairuaki ka kitea anō hoki i roto i ngā mate iti e pāngia ana e tātou, tika? Nō reira, ehara i te mea pai te wehi i tētahi mate kino nā te mea kei a koe ēnei tohu.Heoi, ki te roa atu i te torutoru ngā rā ka mau tonu ēnei tohu, ka kino rānei, he mea whakaaro nui kia toro atu ki te tākuta.

He aha i puta ai tēnei DSRCT? He aha te take?

Kua kitea e ngā kairangahau ko te DSRCT te take o te huringa o ngā chromosome i roto i ō tātou pūtau. Nā tēnei huringa ka puta he ira rerekē e kiia nei ko EWS-WT1 . Ko tēnei ira te kawenga mō te tipu o ngā pūtau matepukupuku. Heoi, kāore anō kia tino mōhiotia he aha i pēnei ai te huringa o ēnei chromosome. Koinei te āhuatanga tino uaua o ēnei mate.

Me pēhea te tautuhi a ngā tākuta i tēnei mate DSRCT?

Hei tautuhi i tēnei, ka whakakotahi ngā tākuta i ētahi whakamātautau hei whakatau i te hua:

• Whakamātautau tinana: Tuatahi, ka whāwhā te tākuta i tō puku kia kite ai mēnā ka taea e koe te whāwhā i tētahi mea, pērā i ngā puku.
• Ngā whakamātautau whakaahua: Kei roto i ēnei ko ngā karapa CT , ngā karapa MRI , me ngā whakamātautau ultrasound . Ka taea e ēnei te āwhina ki te whakatau mēnā he pukupuku kei roto i te peritoneum, tōna rahi, me te mea kua horapa ki ētahi atu wāhi.
• Ngā whakamātautau ira: Mā ēnei whakamātautau ka whakaū mēnā kei te kitea te whakarerekētanga ira EWS-WT1 kua whakahuatia i mua. Koinei te mea ka taea te kī tika mēnā he DSRCT.

He aha ngā maimoatanga mō te DSRCT?

He maha ngā tikanga e whakamahia ana e ngā tākuta hei rongoā i te DSRCT. Ko ngā tikanga matua ko:

• Pokanga: Mā te pokanga ka tangohia te maha o ngā pukupuku matepukupuku e taea ana.
• HIPEC (Hyperthermic Intraperitoneal Chemotherapy): He maimoatanga motuhake ake tēnei. I muri i te tangohanga o te pukupuku mā te pokanga, ka werohia ngā rongoā chemotherapy wera ki roto i te kōhao puku hei whakangaro i ngā pūtau matepukupuku e toe ana.
• Te rongoā matū: He rongoā kaha e hoatu ana ki te tinana hei whakangaro i ngā pūtau matepukupuku.
• Whakaora irahiko: Te whakamahinga o ngā hihi kaha-nui hei whakangaro i ngā pūtau matepukupuku.

Ka taea e ēnei maimoatanga te whakaiti i te mate, arā, kāore he tohu, ā, kāore he whakamātautau e kitea ai te mate. Heoi, he maha ngā wā kāore e roa te wā e whakaititia ai tēnei mate. Ka hoki anō pea te mate, nō reira me tīmata pea he maimoatanga hou, he tikanga maimoatanga rerekē rānei.

He mea nui: Ahakoa te maimoatanga e whiwhi ana koe, ko te tiaki mamae mai i tō tīma hauoraKia mahara ki te pātai atu mō tēnei. He mea tēnei hei whakaiti i te mamae tinana me te ahotea hinengaro i puta mai i te mate, hei whakarato hoki i te tautoko hauora, pāpori, me te hinengaro e hiahiatia ana e koe kia ora ai koe i tēnei mate me te pai rawa atu. Ehara tēnei i te maimoatanga e whakaora ana i te mate pukupuku, engari ka taea e ia te whakapai ake i te kounga o tō oranga.

He pānga taha kei te rongoā?

Ae, ka pāngia pea koe e ngā pānga taha i te pokanga, te chemotherapy, me te radiation therapy. Whai muri i te pokanga hei tango i ngā pukupuku DSRCT, ka pāngia pea koe e ngā pānga taha pēnei i te tauhohenga ki te mate whakamoe whānui , te toto rānei. Ko ngā pānga taha noa o te radiation therapy me te chemotherapy ko:

• Korere
• Ngenge
• Whakapairuaki me te ruaki

Kāore ēnei pānga taha e puta i te huarahi kotahi mō te katoa, ko ētahi he iti ake, ko ētahi he nui ake. Mā tō tākuta koe e whakamōhio atu.

He aha te matapae mō te tūroro i roto i te DSRCT?

Koinei te mea tino uaua ki te kōrero, ā, he mea e hiahia ana te katoa ki te mōhio. Ko te matapae ko tā ngā tākuta e kī ana ka taea e koe te tumanako i muri i te maimoatanga. Ka whakatauhia tēnei e rātou i runga i ngā āhuatanga pēnei i te wāhi kei reira te mate pukupuku, mēnā kua horapa, me te nui o te mea i tangohia i te wā o te pokanga.

Nā te mea he mate pukupuku onge te DSRCT, he iti noa iho ngā rangahau mōna. Nō reira, he uaua ki ngā tākuta te kī tika i te mea ka taea e koe te tumanako, me te roa rānei o tō oranga. He tino mamae tēnei.

E whakaatu ana ngā raraunga o nāianei ko te reiti oranga mō te DSRCT i roto i ngā tau e rima i muri i te tātaritanga kei waenga i te 15% me te 38% . Ko te tikanga tēnei kāore te katoa e ora. Heoi, kua whakaatuhia e tētahi tātaritanga he iti noa te ōrau o ngā tūroro me te DSRCT metastatic ka ora katoa mā te maimoatanga. Waihoki, tata ki te 60% o te hunga i rongoatia i mua i te horapa o te mate pukupuku kei te ora tonu i muri i ngā tau e rima. Nō reira, ka kite koe i te hiranga o te kite wawe me te tīmata wawe i te maimoatanga, tika?

Me pēhea taku tiaki i ahau anō me tēnei mate?

He mate pukupuku onge, he kino hoki te DSRCT. Ka hoki mai anō pea i muri i ngā marama, i ngā tau rānei o te maimoatanga. Ehara i te mea ngāwari te noho me te wehi kei hoki mai anō te mate pukupuku. Heoi, he iti noa ngā mea hei āwhina i a koe i tēnei haerenga:

• Kia mārama ki tō āhua: Nā te mea he onge te DSRCT, he uaua ki te kimi i ngā mōhiohio tika, hou hoki mōna. Nō reira, kaua e mangere ki te pātai ki tō rōpū hauora he aha ngā mea hei tumanako atu māu. Ko rātou te hunga e mōhio ana ki a koe me tō āhua.
• Pātai atu mō te whai wāhi atu ki ngā whakamātautau haumanu:Kei te whakamātautau ngā kairangahau i ngā huarahi hou hei rongoā i te DSRCT. Pātai atu ki tō tākuta mēnā ka taea e koe te whai wāhi atu ki tētahi whakamātautau haumanu .
• Whakaarohia te oranga tonutanga o te mate pukupuku: Mai i te rā i kitea ai tō mate, he toa koe, he tangata ora tonu mō te toenga o tō oranga. Pātai atu ki tō rōpū hauora mō ngā kaupapa motuhake mō te hunga e pāngia ana e te mate pukupuku e hokihoki mai ana.
• Rapua he tautoko: Pātai atu ki tō rōpū hauora mō ngā rōpū tautoko mō te hunga he mate pukupuku onge. Mā te whakapau wā me te kōrero ki te hunga e pāngia ana e ngā wheako ōrite ki a koe, e pāngia ana rānei e ngā wheako ōrite, ka āwhina i te whakaiti i te mokemoke o te noho me te DSRCT.

Āhea ahau me kite anō i taku tākuta?

He mate te DSRCT ka puta anō i te nuinga o te wā. Nō reira, ka tūtohu pea tō tākuta kia whakahaerehia he whakamātautau whakaahua (pēnei i te matawai CT) i ia toru ki te ono marama hei tirotiro i ngā pukupuku hou i roto i te arai o te puku, i tētahi atu wāhi rānei. He mea tino nui kia kaua e mahue ēnei tirotiro whai muri .

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

I tēnei wā, tera pea he maha āu pātai. He uaua ki te mārama i ngā mea katoa i te wā kotahi. Kaua e mataku, akohia ēnei mea katoa mā te āta haere. Anei ētahi pātai hei tīmatanga:

• Me pēhea taku mōhio tino ko tēnei āhuatanga e kiia nei ko te DSRCT te take o aku tohumate?
• Ka taea te whakaora katoa i tēnei mā te rongoā?
• He aha ngā maimoatanga e taunaki ana koe?
• He aha ngā pānga taha o aua maimoatanga?
• Me whakaaro ahau ki te whai wāhi atu ki tētahi whakamātautau haumanu?

Ki te kitea tō mate DSRCT, ka huri pea tō ao i tētahi āhuatanga. Tērā pea ka pōuri koe i ngā kare ā-roto. Tērā pea kei te āwangawanga koe mō ngā mea ka puta i muri mai, te āhua o te maimoatanga, me te āhua o tō heke mai. Tērā pea he mea whakarihariha te kimi i ngā kōrero mō tētahi mate e pāngia ana e te iti noa o te ōrau o te tangata o te ao.

E mārama ana tō tīma hauora ki ēnei kare ā-roto katoa. Ka hoatu e rātou he wā e hiahiatia ana e koe kia mārama ai koe ki ngā mea e pā ana ki a koe me ngā mea ka pā mai i muri mai. Kaua e wehi ki te kōrero ki a rātou, me te pātai atu i ō pātai.

Karere Whakamutunga mō te Tango ki te Kāinga

He mea noa te pōuri nui ina rongo koe i tēnei mate e kiia nei ko te DSRCT. Heoi, kia maumahara ki ēnei kōrero:

• He mate pukupuku tino onge, he kino hoki te DSRCT. He mea nui kia mōhiotia tuatahitia tēnā.
• Kia tūpato ki ngā tohu. Ki te mamae tonu tō puku, kei te pupuhi, kei te heke rānei tō taumaha, rapua he tohutohu hauora.
• He mea nui te kitenga wawe me te maimoatanga tere. Ka taea e tēnei te whakarerekē i te ahunga o te mate ki tētahi taumata.
• Kāore koe i te mokemoke.Kei reira te tīma hauora, te whānau, me ngā rōpū tautoko hei āwhina i a koe.
• Whakaarohia te tiaki mamae. Ka taea e tēnei te whakapai ake i te kounga o tō oranga.
• Kaua e wehi ki te pātai. Kia mārama te whakarongo ki ngā kōrero katoa a tō tākuta.

Ko te tumanako kua āwhina ēnei mōhiohio i a koe kia mārama ake ai ki tēnei mate onge. Kia maumahara, ko te mōhio te kaha nui rawa atu hei aro atu ki ngā wero katoa.