He wehewehe maʻalahi no nā puʻupuʻu ʻē ma nā wāwae a me nā lima: E aʻo kākou e pili ana i ka Clear Cell Sarcoma.

Ua loaʻa paha iā ʻoe kahi puʻupuʻu a i ʻole ka ulu ʻana ma lalo o ka ʻili o kou wāwae a lima paha ʻaʻole e nalo? ʻAʻole paha e ʻeha ke kaomi ʻoe iā ia. Akā inā manaʻo ʻia e ulu nui ana, he mea paha ia e hopohopo ai. I kēia lā e kamaʻilio mākou e pili ana i kahi maʻi ʻaʻai laha ʻole e hiki ke hana i nā hōʻailona like, akā he mea pono ke makaʻala. Ua kapa ʻia ʻo Clear Cell Sarcoma .

He aha ka Clear Cell Sarcoma?

I ka ʻōlelo maʻalahi, he ʻano maʻi kanesa kakaʻikahi loa ka clear cell sarcoma e kū mai ana i loko o nā ʻiʻo palupalu . Hāʻule ia i loko o kahi māhele i kapa ʻia ʻo sarcoma . ʻO ka hapa pinepine, hoʻomaka kēia mau maʻi kanesa i nā tendons , nā ʻiʻo e hoʻopili ai i nā ʻiʻo i nā iwi, a me nā ʻiʻo palupalu a puni nā ʻiʻo, i kou mau wāwae, ʻoi aku hoʻi kou mau wāwae.

E like me nā ʻano maʻi ʻē aʻe, ʻoi aku ka maʻalahi o ka mālama ʻana i ka sarcoma cell clear inā loaʻa ma mua o ka laha ʻana i nā ʻāpana ʻē aʻe o ke kino. Hoʻōla nā kauka i kēia kūlana me ke ʻoki kino , a inā pono , ka radiation therapy a i kekahi manawa chemotherapy . ʻO ka mea pōʻino, ʻoiai ma hope o ka mālama ʻana, he nui ka manawa e hoʻi hou ai ka maʻi. ʻO ia ke kumu e ʻimi mau nei nā mea noiʻi lapaʻau i nā ala hou e mālama ai i ka sarcoma cell clear.

Pehea ka hopena o ka sarcoma cell clear i koʻu kino?

Hoʻomaka pinepine ka sarcoma cell clear i loko o nā ʻiʻo palupalu hohonu a puni kou mau tendon a me nā ʻiʻo, a i ʻole ma kahi papa o nā ʻiʻo i kapa ʻia ʻo fascia . Ua like ka Fascia me ke kāʻei e hoʻopuni ana a puni kēlā me kēia ʻano o ko mākou kino.

I ka wā mua, ʻaʻole paha ʻoe e ʻike i kekahi mea. Akā e ʻike ʻoe i ka wā e ulu ai ke kanesa a lilo i puʻupuʻu e hiki ke ʻike ʻia ma lalo o ka ʻili o kou wāwae a wāwae paha. Hiki ke like kēia puʻupuʻu me kahi puʻupuʻu e ʻike ʻia ke kuʻi ikaika ʻoe i kou wāwae a wāwae paha, akā ʻo ka ʻokoʻa koʻikoʻi, ʻaʻole e emi kēia puʻupuʻu i ka hala ʻana o ka manawa . Ulu mālie loa ka sarcoma cell clear. Eia naʻe, i ka manawa i laha ai mai kou mau ʻiʻo palupalu hohonu ma lalo o ka ʻili, ua hoʻomaka paha ia e laha i nā ʻāpana ʻē aʻe o kou kino.

E noʻonoʻo, loaʻa iā ʻoe kahi puʻupuʻu liʻiliʻi ma kou wāwae a hoʻowahāwahā ʻoe iā ia, me ka manaʻo, "Auē, ua hana wale ʻia kēia." He mau pule a he mau mahina paha ma hope mai, aia nō ia ma laila, malia paha he nui iki aʻe. I kēlā hihia, ʻoi aku ka maikaʻi o ka ʻimi ʻana i ka ʻōlelo aʻoaʻo lapaʻau.

Ma hea e laha ai ka sarcoma cell maopopo?

Hiki i ka sarcoma cell clear ke laha i nā ʻāpana ʻē aʻe o ke kino, ʻo ia hoʻi:

• ʻO kāu ʻōnaehana hoʻoheheʻe (ʻōnaehana gastrointestinal)
• NāuI nā māmā
• ʻO kou ʻōnaehana lymphatic , ʻo ia hoʻi nā lymph nodes a me nā kīʻaha lymph i loko o kou kino.

He kūlana maʻamau anei kēia?

ʻAʻole, ʻaʻole loa. He ʻano maʻi kanesa kakaʻikahi loa kēia. ʻO ka ʻoiaʻiʻo, he ʻano maʻi kanesa kakaʻikahi nō hoʻi ka sarcoma. No ka laʻana, ma ʻAmelika Hui Pū ʻIa, ma kahi o 1,600 poʻe i ʻike ʻia me ka sarcoma i kēlā me kēia makahiki. He helu liʻiliʻi kēlā, ma kahi o 1% o nā maʻi kanesa āpau i nā pākeke. ʻO ka sarcoma cell clear, ʻo ia wale nō 1% o nā sarcoma āpau. No laila hiki iā ʻoe ke noʻonoʻo i ka laha ʻole o kēia.

ʻO wai ka mea i ʻoi aku ka paʻakikī o ka loaʻa ʻana o ka sarcoma cell clear?

ʻOiai hiki ke ulu ka sarcoma cell clear i kēlā me kēia makahiki, ʻike pinepine ʻia ia i nā poʻe ʻōpio ma waena o nā makahiki 15 a me 40 , ʻoiai ka poʻe i ko lākou mau makahiki 20 a me 30.

He aha nā hōʻailona o ka sarcoma cell maopopo?

E like me kā mākou i kamaʻilio ai ma mua, ʻo ka hōʻailona maʻamau ka puʻupuʻu i nalowale ʻole ma lalo o ka ʻili ma kou wāwae a wāwae paha . ʻEha paha kēia puʻupuʻu a ʻaʻole paha. Akā inā aia ia ma laila a manaʻo ʻia e ulu nui ana, he hōʻailona nui ia.

Eia kekahi, hiki ke ʻike ʻia nā hōʻailona ma hope:

• Luhi nui me ke kumu ʻole
• Ka pohō kaumaha i wehewehe ʻole ʻia
• Nā hou o ka pō

He aha ke kumu o ka sarcoma cell maopopo?

He mea paʻakikī iki kēia. Ua ʻike nā kānaka noiʻi lapaʻau ua hana ʻia ka sarcoma cell clear e nā ʻāpana o ʻelua chromosomes i loko o ko mākou mau ʻāpana kino e hoʻololi ana i nā wahi, e hana ana i kahi gene i hoʻohui ʻia hou.

I ka ʻōlelo maʻalahi, eia ka mea e hana ʻia:

Ke māhele ʻia nā ʻāpana o ko kākou kino, i kekahi manawa e haki ana ʻelua mau chromosome a hoʻololi nā ʻāpana i haki kekahi i kekahi. I kēia hihia, aia nā ʻāpana chromosome i hoʻololi ʻia i nā genes i kapa ʻia ʻo EWSR1 a me ATF1 . Me he mea lā he mea nui ka protein i hana ʻia e ka gene EWSR1 no ka hana o ke kelepona. Kōkua ka gene ATF1 i ka hoʻomalu ʻana i ka ulu ʻana o ke kelepona. Ke hui hou kēia mau chromosome, e pau nā ʻāpana gene i hoʻololi ʻia i nā wahi kūpono ʻole. Kāhea nā kauka i kēia he reciprocal translocation . ʻAʻole maopopo ke kumu pololei o kēia hana.

Ke hoʻoili ʻia i kahi chromosome hou, hui pū nā genes i hoʻololi ʻia e hana i kahi gene i hoʻohui ʻia i kapa ʻia ʻo EWSR1/ATF1 . Manaʻo nā kānaka noiʻi ʻo kēia gene i hoʻohui ʻia ke kumu nui o ka sarcoma cell clear.

Pehea e ʻike ai nā kauka i ka sarcoma cell clear?

Ke hele ʻoe e ʻike i ke kauka me kahi puʻupuʻu e like me kēlā, e nānā mua ʻo ia iā ʻoe a nānā i kahi o ka puʻupuʻu, kona nui, a me nā mea ʻē aʻe. A laila pono paha ʻoe i kahi scan MRI (Magnetic Resonance Imaging - MRI).Hiki nō.

Eia nō naʻe, ua hōʻoia ʻia ka ʻike ʻana o ka sarcoma cell clear e kahi biopsy, kahi e pili ana i ka lawe ʻana i kahi ʻāpana liʻiliʻi o ka ʻiʻo mai ka puʻupuʻu . Ke nānā ʻia kēia hāpana ʻiʻo ma lalo o kahi microscope, ʻo nā pathologists, nā loea e nānā i nā ʻiʻo i loko o ka lab, e nānā i ke alo o ka gene EWSR1/ATF1 i hoʻohui ʻia a mākou i kamaʻilio ai ma mua.

Pehea e mālama ʻia ai ka sarcoma cell maopopo?

ʻO ka pahuhopu nui o nā kauka ke kāohi i ka laha ʻana o ka sarcoma cell clear i nā ʻāpana ʻē aʻe o ke kino. I ka hapanui o nā hihia, ʻo ka hana mua ka hana ʻana i ke ʻoki kino e wehe loa i ka puʻupuʻu . Inā ua laha ka maʻi ʻaʻai i nā lymph nodes, e wehe ʻia kēlā mau lymph nodes. Ma hope o kēia, ua hoʻohana ʻia ka lāʻau lapaʻau adjuvant . Hoʻokomo pinepine kēia i ka radiation therapy e pepehi i nā hunaola kanesa i koe.

Ke noiʻi nei nā kānaka noiʻi lapaʻau i nā lāʻau lapaʻau ʻē aʻe i kēia manawa. No ka laʻana, ke nānā nei lākou i ka maikaʻi o ka immunotherapy i ka kaohi ʻana i ka sarcoma cell clear. Ke hoʻāʻo nei hoʻi lākou inā hiki i nā lāʻau lapaʻau i hoʻohana ʻia e mālama i nā ʻano maʻi ʻē aʻe ke kōkua i ka hoʻōki ʻana i ka laha ʻana o ka sarcoma cell clear.

ʻO ka mea nui, ʻo ka sarcoma cell clear kahi maʻi e hiki ke hoʻi hou mai. Inā hana ʻia kēlā, pono paha ʻoe e hana hou i ke ʻoki kino a me ka radiation therapy. A no ka mea hiki ke laha koke, e nānā pinepine nā kauka iā ʻoe e ʻike inā e ulu ana nā puʻupuʻu hou.

Hiki iaʻu ke hōʻemi i koʻu pilikia o ka loaʻa ʻana o ka sarcoma cell clear?

ʻO ka mea pōʻino, ʻaʻohe mea hiki iā ʻoe ke hana e hōʻemi i kou pilikia o ka loaʻa ʻana o kēia maʻi. No ka mea, ʻaʻole i ʻike nā kānaka noiʻi lapaʻau i kekahi mau kumu pilikia kikoʻī no ka hoʻomohala ʻana i ka sarcoma cell clear. ʻO kahi kumu pilikia kahi hana a i ʻole ke kūlana e hoʻonui ai i ka manawa kūpono o ka loaʻa ʻana o kahi maʻi.

Hiki ke ho'ōla loa ʻia ka sarcoma cell clear?

Hiki i nā kauka ke mālama i ka sarcoma cell clear, ʻo ia hoʻi hiki iā lākou ke wehe i ka puʻupuʻu a hoʻāʻo e kāohi i kona laha ʻana. Eia naʻe, ʻaʻole ia he maʻi hiki ke ho'ōla piha ʻia . I ka manawa pinepine, hiki i ka sarcoma cell clear ke laha i nā ʻāpana ʻē aʻe o ke kino i ka manawa e ʻike ʻia ai. ʻOi aku ka paʻakikī o ka mālama ʻana. ʻOi aku ka nui o ka hiki ke hoʻi hou mai ma hope o ka mālama ʻana.

He aha ke kūlana o ke ola o kekahi me ka clear cell sarcoma?

ʻO ke kūlana ola he kuhi maʻamau ia o ka lōʻihi o kou ola ʻana, ma muli o kou olakino holoʻokoʻa a me nā mea pilikino. Ua hōʻike ʻia kahi loiloi 2018 o ka US National Cancer Database i waena o ka poʻe me ka clear cell sarcoma,Ua ʻōlelo pū ʻia hoʻi he 50% e ola ana no ʻelima mau makahiki ma hope o ka hōʻoia ʻana, a he 38% e ola ana no nā makahiki he ʻumi ma hope o ka hōʻoia ʻana .

Inā mākou e kamaʻilio e pili ana i ka manaʻolana ola a i ʻole nā ​​helu ola, he mea nui e hoʻomanaʻo he mau kuhi wale nō kēia, ʻaʻole nā ​​wānana. ʻO ka manaʻolana ola he kuhi i hoʻokumu ʻia ma ka heluna kanaka holoʻokoʻa. ʻO nā helu ola maʻi kanesa he mau kuhi i hoʻokumu ʻia ma ka lōʻihi o ke ola ʻana o ka poʻe ma hope o ka mālama ʻia ʻana no kekahi ʻano maʻi kanesa. Nui nā mea e hiki ke hoʻopilikia i ka manaʻolana ola o ke kanaka a i ʻole ko lākou manawa e ola ai i ka maʻi kanesa. Inā loaʻa iā ʻoe ka sarcoma cell clear, hiki i kāu kauka ke hāʻawi iā ʻoe i ka ʻike maikaʻi loa e pili ana i ka mea e manaʻo ai.

Hiki i ka sarcoma cell clear ke make?

ʻAe, hiki ke make. Ma keʻano laulā, ʻoi aku ka nui o ka make ʻana o ka poʻe nona ka sarcoma cell clear i nā ʻāpana ʻē aʻe o ke kino ma mua o ka poʻe i loaʻa ka lāʻau lapaʻau ma mua o ka laha ʻana o ke kanesa.

Āhea wau e ʻike ai i kaʻu kauka?

No ka mea hiki ke hoʻi hou mai ka sarcoma cell clear ma hope o ka mālama ʻana, makemake paha kāu kauka e ʻike iā ʻoe i kēlā me kēia ʻekolu mahina no nā makahiki ʻelua mua ma hope o ka pau ʻana o ka mālama ʻana, ma muli o kou kūlana. He mea nui e hana i nā nānā mau ʻana i nā manawa maʻamau ma hope.

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

He maʻi laha ʻole ka sarcoma cell clear. Hiki ke hoʻoweliweli i ke ola. Inā ua ʻike ʻia ʻoe me kēia maʻi, makemake paha ʻoe e nīnau i kāu kauka i kēia mau nīnau:

• Aia i hea ka puʻupuʻu? Pehea ka nui?
• Ua laha anei ke puʻupuʻu ma nā wahi ʻē aʻe o koʻu kino?
• He aha nā lāʻau lapaʻau āu e paipai nei?
• He aha nā hopena ʻaoʻao o ka lāʻau lapaʻau?
• Inā hana ʻia ke ʻoki kino iaʻu, he aha ka manawa e hoʻi hou mai ai ka puʻupuʻu?
• Aia kekahi mau hoʻokolohua lapaʻau e hiki iaʻu ke noʻonoʻo?

Hōʻuluʻulu Manaʻo a me ka Leka Lawe-Home

He maʻi paʻakikī maoli ka Clear Cell Sarcoma. He mea kākaʻikahi loa ia. Hoʻopilikia wale ia i kahi kakaikahi o ka poʻe i ka makahiki. A ulu mālie loa ia. Hiki i ka sarcoma ke laha a make i ka manawa e ʻike ai ka hapa nui o ka poʻe i nā loli i ko lākou kino.

Akā e hoʻomanaʻo, hiki i nā kauka ke mālama i ka sarcoma cell clear. Hiki iā lākou ke wehe i ka puʻupuʻu me ke ʻoki ʻana, a hiki iā lākou ke hāʻawi iā ʻoe i ka lāʻau e pepehi i nā hunaola kanesa i koe. ʻO ka mea pōʻino, hiki i ka sarcoma cell clear ke hoʻi pinepine mai. No laila he mea nui e hana i nā nānā mau ʻana a e makaʻala i nā loli i kou kino.

Ke ʻimi nei nā kānaka noiʻi lapaʻau i nā ala hou e mālama ai i ka sarcoma cell clear. Inā loaʻa iā ʻoe ka sarcoma cell clear, loaʻa nā hoʻokolohua lapaʻau hou.Inā makemake ʻoe e aʻo hou e pili ana i ia mea, e nīnau i kāu kauka e pili ana i ia mea a loaʻa ka ʻōlelo aʻo. Mai hoʻokuʻu i ka manaʻolana. Me ke aʻo lapaʻau kūpono a me ke kākoʻo, hiki iā ʻoe ke kū i kēia pilikia.

ʻO ka sarcoma cell clear, ka maʻi ʻaʻai palupalu, nā puʻupuʻu wāwae, nā puʻupuʻu wāwae, sarcoma, nā hōʻailona o ke kanesa, ka mālama ʻana i ke kanesa