Ua loaʻa i kāu keiki kahi puʻupuʻu ʻē? E kamaʻilio kākou e pili ana iā Rhabdomyosarcoma

He mea maʻamau ke makaʻu nui i ka wā e ʻike ai ʻoe i kahi mea ʻē, e like me kahi puʻupuʻu a pehu paha, ma kou kino a i ʻole ma ke kino o kāu keiki liʻiliʻi. I kēlā mau manawa, noʻonoʻo mākou i nā mea he nui. I kēia lā e kamaʻilio mākou e pili ana i kahi ʻano maʻi kanesa e like paha me ia, akā he mea kakaikahi iki. ʻO ia ka rhabdomyosarcoma. ʻOiai paha he paʻakikī iki ke kani ʻana o ka inoa ke lohe ʻoe, e kamaʻilio maʻalahi kākou e pili ana.

He aha ka Rhabdomyosarcoma?

I ka ʻōlelo maʻalahi, ʻo ka rhabdomyosarcoma kahi ʻano maʻi kanesa e ulu ana i loko o nā ʻiʻo palupalu o ko mākou kino. Hoʻopilikia pinepine ia i nā ʻiʻo i hoʻopili ʻia i ko mākou iwi (i kapa ʻia he mau ʻiʻo iwi). ʻO ka mea maʻamau ia i nā keiki a me nā ʻōpio , akā hiki nō hoʻi ke hoʻopilikia i nā pākeke. Ua manaʻo ʻia ma waena o 400 a me 500 mau kānaka ma ʻAmelika Hui Pū ʻIa e ʻike ʻia ana kēia maʻi i kēlā me kēia makahiki. ʻO ia hoʻi, he maʻi kanesa kakaikahi loa ia. Aia nā ʻano like ʻole o ka rhabdomyosarcoma. He ʻino loa kekahi mau ʻano, ʻo ia hoʻi, laha koke lākou a paʻakikī ke mālama. Me ka mālama maikaʻi ʻana, i kekahi manawa hiki ke nalowale loa ke ʻano (i kapa ʻia he remission). Eia naʻe, i kekahi manawa hiki ke hoʻi hou mai ke kanesa (i kapa ʻia he recurrence cancer).

He aha nā ʻano nui o kēia maʻi?

Aia kekahi mau ʻano nui o ka rhabdomyosarcoma. E nānā kākou i ko lākou ʻano:

1. ʻO ka Embryonal Rhabdomyosarcoma `(Embryonal Rhabdomyosarcoma)`

ʻO kēia ke ʻano maʻamau . Loaʻa ia i nā keiki ma mua o nā pākeke. Loaʻa pinepine ia ma nā wahi a puni ke poʻo a me ka ʻāʻī. No ka laʻana, i loko o nā membrane e uhi ana i ka lolo a me ka lua maka (kahi i piholo ai ka maka). Aia kekahi mau ʻano like ʻole. Hiki i kekahi ke ulu i loko o nā ʻōpū hakahaka e like me ka ʻōpū mimi a me ka vagina (i kapa ʻia ʻo "Botryoid Rhabdomyosarcoma"). Hiki i kekahi ʻano like ʻole ke ulu a puni nā testicles (sperms) o kahi keiki (i kapa ʻia ʻo "Spindle Cell Rhabdomyosarcoma").

2. ʻO ka Alveolar Rhabdomyosarcoma `(Alveolar Rhabdomyosarcoma)`

ʻIke pinepine ʻia kēia ʻano i nā keiki makua a me nā ʻōpio, ma waena o 20 a me 35 mau makahiki. ʻO ka hapa nui o ia mea e ʻike ʻia ma nā lima, nā wāwae, a i ʻole ke kino. He koʻikoʻi loa kēia ʻano alveolar a pālahalaha koke . Hoʻomaka ia e pālahalaha koke ma hope o kona ulu ʻana.

3. ʻO ka Pleomorphic Rhabdomyosarcoma `(Pleomorphic Rhabdomyosarcoma)`

ʻIke pinepine ʻia kēia ʻano i nā pākeke ma luna o 50 mau makahiki. ʻOiai hiki ke ulu ma nā wahi āpau o ke kino, ʻike pinepine ʻia ma nā wāwae . Hiki nō hoʻi ke ulu ma nā lima, ka umauma, ka ʻōpū, a me kekahi mau ʻāpana o ke poʻo a me ka ʻāʻī.

He aha nā hōʻailona o ka rhabdomyosarcoma?

ʻOkoʻa nā hōʻailona o kēia maʻi ma muli o kahi i loaʻa ai ke kanesa . No ka laʻana, inā he puʻupuʻu e like me kēia i loko o ka pepeiao o ke keiki, hiki iā lākou ke ʻike i nā hōʻailona e like me ka ʻeha pepeiao a me ka kahe ʻana o ke wai mai ka pepeiao. Inā ulu kahi puʻupuʻu ma hope o ka maka, hiki i ka maka ke ʻike ʻia he pehu a me ka puʻupuʻu. Eia kekahi mau laʻana ʻē aʻe:

• I ke ʻano o kahi ʻiʻo ma ka lima a i ʻole ka wāwae: he puʻupuʻu a pehu paha e hele pū me ka ʻeha.
• ʻŌpū (`(ʻŌpū)`): ʻeha ʻōpū , paʻa paʻa, luaʻi .
• ʻŌpū mimi a me ke ala mimi: Koko i loko o ka mimi (`(Hematuria)`), paʻakikī ke mimi.
• Lua ihu: Nā hōʻailona like me ke kahe ʻana o ka ihu (`(Epistaxis)`), nā maʻi sinus (`(Sinus Infection )`).
• Vaginal: Kekahi mea e like me kahi puʻu e puka mai ana mai loko mai o ka vagina o ke pēpē.
• Nā puʻupuʻu testicle : He puʻupuʻu e ulu wikiwiki ana a puni nā testicle o ke keiki.

He mea nui: Hiki ke hana ʻia kēia mau hōʻailona e nā maʻi ʻoi aku ka koʻikoʻi. ʻO nā mea e like me ke kahe ʻana o ka ihu, ka luaʻi ʻana, a me nā puʻupuʻu i ke kino, ʻaʻole ia he mau mea i hana ʻia e ka rhabdomyosarcoma. Eia nō naʻe, inā loaʻa iā ʻoe a i kāu keiki kēia mau hōʻailona, ​​​​inā hoʻomau lākou a i ʻole e ʻoi aku ka ʻino, pono ʻoe e ʻike i ke kauka .

He aha nā kumu o kēia maʻi?

Hoʻokumu ʻia ʻo Rhabdomyosarcoma e nā hoʻololi genetic i loko o kā mākou mau cell muscle (nā cell muscle immature) e hoʻolilo iā lākou i maʻi kanesa a māhele koke, e hana ana i nā tumors. ʻO kekahi mau hoʻololi genetic, e like me ka gene fusion PAX/FOX01, hiki ke hana i kekahi mau ʻano rhabdomyosarcoma. Eia kekahi, ʻoi aku ka nui o ka pilikia o ka poʻe me kekahi mau maʻi hoʻoilina i ka loaʻa ʻana o ka maʻi. ʻO kekahi o kēia mau maʻi:

• ʻO ka maʻi Li-Fraumeni
• ʻO ka maʻi Beckwith-Wiedemann
• ʻO ka neurofibromatosis
• ʻO ka maʻi Costello
• ʻO ka maʻi Cardiofasciocutaneous `(Cardiofasciocutaneous syndrome)`

Pehea e ʻike ʻia ai ka rhabdomyosarcoma?

Ke ʻike ʻoe a i ʻole kāu keiki i ke kauka, e nīnau mua lākou e pili ana i kāu mau hōʻailona. E nīnau pū lākou inā loaʻa i kekahi o kou ʻohana kekahi o nā kūlana hoʻoilina i ʻōlelo ʻia ma luna, no ka mea hiki i kēia ke hāʻawi iā ʻoe i kahi manaʻo o kou pilikia o ka loaʻa ʻana o ka maʻi. A laila e hana lākou i kahi hoʻokolokolo kino e nānā i nā hōʻailona o ka maʻi, e like me nā puʻupuʻu a me ka pehu. Eia kekahi, hiki iā lākou ke hana i nā hoʻokolohua aʻe e kōkua i ka ʻike ʻana i ke kūlana:

• ʻO ke scan CT `(Computed Tomography (CT) scan)` a i ʻole ke scan MRI `(Magnetic Resonance Imaging (MRI) scan)`
• ʻO ke scan PET `(Positron Emission Tomography (PET) scan)`
• Nānā iwi
• ʻO ka puncture lumbar (kahi hoʻāʻo e lawe ʻia ai kahi wai liʻiliʻi mai ke kaula spinal)
• Biopsy o ka iwi iwi
• ʻO kahi biopsy (lawe ʻana i kahi ʻāpana liʻiliʻi o ka ʻiʻo mai ka puʻupuʻu no ka hoʻokolokolo ʻana)
• Nā hoʻokolohua kiko kūikawā e like me ka immunohistochemistry
• Nā hoʻokolohua Cytology

Hiki ke ʻike ʻia kēia me nā hoʻāʻo koko?

ʻAʻole, ʻaʻohe hoʻāʻo koko pololei e hiki ai ke ʻike i ka rhabdomyosarcoma. Eia nō naʻe, hiki i kāu kauka maʻi kanesa ke kauoha i nā hoʻāʻo koko ma hope o ka hōʻoia ʻana. No ka laʻana, hiki ke hana ʻia kahi helu koko piha (CBC) e ʻike inā ua laha ka maʻi i ka iwi iwi. Hana ʻia nā hoʻāʻo koko i ka wā o ka mālama ʻana e ʻike pehea e pane ai kou kino i ka mālama ʻana.

Nā Pūʻulu Pōpilikia o Rhabdomyosarcoma

Ke loaʻa i nā keiki ka rhabdomyosarcoma, hoʻokaʻawale nā ​​​​​​kaukaʻi oncologists i ka maʻi i nā hui pilikia. Hoʻokumu ʻia kēia hoʻokaʻawale ʻana ma luna o ʻekolu mau kumu nui: 1. Kahua Tumor: Hoʻohana nā kauka i kahi ʻōnaehana i kapa ʻia ʻo TNM Staging System e hoʻoholo i kēia. Pili ʻo T i ka nui a me kahi o ka puʻupuʻu, pili ʻo N inā ua pālahalaha ke kanesa i nā lymph nodes, a pili ʻo M inā ua pālahalaha ke kanesa i nā ʻāpana ʻē aʻe o ke kino. 2. Pūʻulu Lapaʻau: Hoʻoholo ʻia kēia ma hope o kahi biopsy a i ʻole ke ʻoki kino. No ka laʻana, inā hiki ke wehe loa ʻia ka puʻupuʻu e ka biopsy a i ʻole ke ʻoki kino, ua hoʻokaʻawale ʻia ʻo ia ma ke ʻano he Group I. Loaʻa kēia mau hui mai 1 a 4. 3. Nā loli genetic: Inā paha aia ka mutation gene fusion PAX/FOX01. Ua kapa ʻia kēia mau māhele pilikia he haʻahaʻa ka pilikia, ka pilikia waena, a me ka pilikia kiʻekiʻe . Hoʻohana ka hui lapaʻau o kāu keiki i kēia māhele pilikia e hoʻolālā i ka lāʻau lapaʻau, e kuhi i ka manawa e hoʻi mai ai ke kanesa ma hope o ka lāʻau lapaʻau, a hoʻoholo i ka mea e manaʻo ai ma hope o ka lāʻau lapaʻau (prognosis).

He paʻakikī iki ke kaʻina hana o ka hoʻoholo ʻana i kēia māhele pilikia. ʻAʻole paha ʻoe e hoʻomaopopo koke i nā ʻike āpau i hoʻohana ʻia. No laila, mai kānalua e noi i ka hui lapaʻau o kāu keiki no ka wehewehe ʻana . E hauʻoli lākou e wehewehe i nā mea āpau iā ʻoe.

He aha nā lāʻau lapaʻau no ka rhabdomyosarcoma?

ʻOkoʻa nā koho lapaʻau ma muli o ke ʻano o ka maʻi. No ka mea, he maʻi laha ʻole ka rhabdomyosarcoma, inā loaʻa iā ʻoe a i ʻole kāu keiki kēia maʻi,E nīnau i kāu hui lapaʻau inā hiki iā ʻoe ke komo i kahi hoʻokolohua lapaʻau . Hoʻohana pinepine nā kauka Oncology i kēia mau lāʻau lapaʻau:

• ʻoki kino
• Hoʻōla Pāhawewe
• Kemoterapia (kemoterapia)

Hiki ke ho'ōla loa ʻia ka rhabdomyosarcoma?

I kekahi manawa, ʻae, hiki i ka lāʻau lapaʻau ke ho'ōla i ka rhabdomyosarcoma . Ua kapa ʻia kēia he "remission" o ka maʻi. ʻO ke ʻano kēia e nalowale nā ​​​​hōʻailona a ʻaʻohe ʻike ʻia nā hunaola kanesa ma nā hoʻokolohua. I ka hapa nui o ka manawa, he mau loa kēia lāʻau lapaʻau, akā i kekahi manawa hiki i ka rhabdomyosarcoma ke hoʻi hou mai. Ma keʻano laulā, ʻoi aku ka liʻiliʻi o ka poʻe mākua e hoʻōla piha mai kēia maʻi ma mua o nā keiki .

He aha ke kūlana o ke ola o kekahi kanaka me ka rhabdomyosarcoma?

ʻAʻohe helu kikoʻī no ka lōʻihi o ke ola ʻana o kekahi me ka rhabdomyosarcoma. Eia nō naʻe, mālama nā kānaka noiʻi i ka pakeneka o ka poʻe e ola ana i ʻelima mau makahiki ma hope o ka ʻike ʻia ʻana me ka rhabdomyosarcoma. Pili kēia helu ola i nā kumu he nui, me ke ʻano o ka maʻi, ka hui pilikia, a inā hoʻi mai ka maʻi ma hope o ka mālama ʻana . Ma keʻano holoʻokoʻa, 70% o nā keiki me kēia maʻi e ola ana i ʻelima mau makahiki ma hope o ka ʻike ʻia ʻana. No nā pākeke, ʻo ka helu ola ʻelima makahiki ma kahi o 20%.

Me ka nānā ʻole i kou kūlana, he mea nui e hoʻomanaʻo he mau kuhi kēia mau helu ola e pili ana i nā ʻike o nā poʻe ʻē aʻe i mālama ʻia no ka rhabdomyosarcoma. Inā loaʻa iā ʻoe a i ʻole kāu keiki kēia maʻi, he mea maʻamau ka makemake e ʻike i ka mea e hiki mai ana. Inā pēlā, ʻo kāu hui lapaʻau ke kanaka maikaʻi loa e kamaʻilio pū me ia .

Pehea e hiki ai iaʻu ke mālama i kaʻu keiki a me aʻu iho?

Hiki i ke kanesa ke loaʻa ka hopena nui i kou ola o kēlā me kēia lā. ʻAʻole ʻokoʻa ʻo Rhabdomyosarcoma. Inā loaʻa iā ʻoe a i ʻole kāu keiki kēia maʻi, hiki iā ʻoe ke manaʻo i ke kaumaha nui a me ka luhi. Eia kekahi mau manaʻo e hiki ke kōkua i kēia manawa:

• E noʻonoʻo i ka Mālama Palliative: Hiki ke paʻakikī ke hoʻoponopono i nā hōʻailona a me nā lāʻau lapaʻau o ke kanesa. ʻO ka mālama palliative kahi lāʻau lapaʻau e kōkua i ka hoʻomaikaʻi ʻana i ke ʻano o ke ola, mai ka hōʻemi ʻana i nā hōʻailona a hiki i ka hāʻawi ʻana i ke kākoʻo naʻau.
• E kamaʻilio me kahi loea ola keiki: Hiki i ke kanesa ke hoʻohuli i ke ola o kahi keiki i lalo. Hiki iā ia ke lawe aku iā lākou mai nā hoaaloha a me nā hana o kēlā me kēia lā. Hiki i ka noho ʻana me ke kanesa ke mehameha no kahi keiki e hele nei i kahi ʻike i hiki ʻole i kā lākou mau hoaaloha ke hoʻomaopopo. He poʻe limahana olakino i hoʻomaʻamaʻa kūikawā ʻia nā loea ola keiki e kōkua i nā keiki e kū i nā ʻike lapaʻau.
• E hoʻomaha iki:Hiki ke luhi loa ka mālama ʻana i ke kanesa - a me ka mālama ʻana i kahi keiki me ke kanesa. Inā ʻoe e mālama ʻia nei, e hoʻāʻo e hoʻomaha i ka manawa e pono ai, ʻaʻole wale i ka wā e loaʻa ai ka manawa. Inā ʻoe e mālama ana i kahi keiki me ka rhabdomyosarcoma, e nīnau i kāu kauka e pili ana i nā papahana mālama hoʻomaha a me nā lawelawe.
• E noʻonoʻo i ke ola ʻana i ke kanesa: Hiki i ka Rhabdomyosarcoma ke hoʻi mai ma hope o ka mālama ʻana. Inā hopohopo ʻoe e hoʻi mai ana ke kanesa nou a i ʻole kāu keiki, e nīnau i kāu kauka e pili ana i nā lawelawe kākoʻo no ke ola ʻana i ke kanesa.

Āhea wau e hoʻokaʻaʻike aku ai i kaʻu kauka oncologist?

Inā ʻoe a i ʻole kāu keiki e loaʻa ana i ka lāʻau lapaʻau, e kelepona i kāu kauka inā ʻoi aku ka ʻino o nā hopena ʻaoʻao o ka lāʻau lapaʻau ma mua o ka mea i manaʻo ʻia . Ma muli o kou kūlana, ua hāʻawi paha kāu kauka iā ʻoe i nā ʻōlelo kikoʻī e pili ana i nā hōʻailona e hōʻike ana e laha ana a hoʻi mai paha kāu rhabdomyosarcoma. Mai kānalua e kamaʻilio me lākou e pili ana i nā hopohopo āu e loaʻa ai.

He aha nā nīnau e pono iaʻu e nīnau aku i kaʻu kauka?

He maʻi laha ʻole ka Rhabdomyosarcoma. ʻAʻole paha ʻoe i ʻike nui e pili ana i ia mea. Inā loaʻa iā ʻoe kēia maʻi a i ʻole kāu keiki, nui paha kāu mau nīnau e pili ana i ka mea e manaʻo ai i ka wā e hiki mai ana. Eia kekahi mau nīnau e nīnau ai i ia mau manawa:

• He aha ke ʻano o ka rhabdomyosarcoma aʻu/kaʻu keiki?
• He aha ka hoʻokaʻawale ʻana o ka hui pilikia?
• He aha nā lāʻau lapaʻau āu e paipai nei?
• He aha nā hopena ʻaoʻao o ka lāʻau lapaʻau?
• Aia kekahi mau hoʻokolohua lapaʻau e hiki iā mākou ke komo?
• He aha ka wānana no ka maʻi o kaʻu keiki?
• He aha nā lawelawe kākoʻo āu e hiki ke kōkua iā mākou?

ʻO ka mea hope loa, he aha e hoʻomanaʻo ai

He ʻano maʻi kanesa kakaikahi loa ka Rhabdomyosarcoma. ʻAʻole maopopo i nā loea ke kumu o ia mea. Inā loaʻa iā ʻoe a i ʻole kāu keiki ka rhabdomyosarcoma, e huhū paha ʻoe no ka mea ʻaʻole ʻoe i ʻike pono i ke kumu o ia mea. Hoʻomaopopo kāu hui lapaʻau i kēlā. ʻOiai ʻaʻole hiki iā lākou ke wehewehe i ke kumu o ka rhabdomyosarcoma iā ʻoe a i ʻole kāu keiki, hiki iā lākou ke wehewehe i nā mea e like me ka hōʻailona, ​​​​nā lāʻau lapaʻau hiki, a me ka hiki ke komo i nā hoʻokolohua lapaʻau. Hiki iā lākou ke kōkua iā ʻoe e ʻimi i nā kumuwaiwai e like me nā hui kākoʻo a me ka mālama kūikawā. Mai hopohopo, ʻaʻole ʻoe hoʻokahi. Rhabdomyosarcoma, maʻi kanesa, maʻi kanesa kamaliʻi, maʻi kanesa palupalu, nā hōʻailona maʻi kanesa, nā lāʻau lapaʻau maʻi kanesa, nā maʻi genetic