He puʻupuʻu kou ma kou kino? He Epithelioid Sarcoma paha kēia? E ʻike pono kākou!

He mea maʻamau ke hopohopo iki i ka wā e ʻike ai ʻoe i kahi puʻupuʻu liʻiliʻi a i ʻole ka puʻupuʻu ma kekahi wahi o kou kino, ʻeā? I nā manawa e like me ia, noʻonoʻo ʻoe i nā mea he nui. "He aha kēia? He mea weliweli anei?" Hiki mai nā nīnau e like me kēia i ka noʻonoʻo. I kēia lā e kamaʻilio mākou e pili ana i kahi ʻano maʻi kanesa kakaʻikahi loa e hiki ke ʻike ʻia ma ke ʻano he mau puʻupuʻu . ʻO ia ka Epithelioid Sarcoma . ʻOiai paha he mea ʻē iki ka inoa, he mea pono ke ʻike.

He aha ka Epithelioid Sarcoma? I mea pololei…

I ka ʻōlelo maʻalahi, ʻo Epithelioid Sarcoma (ES) kahi ʻano maʻi kanesa kakaikahi loa nona kahi hui o nā maʻi kanesa i kapa ʻia ʻo soft tissue sarcomas . ʻO "soft tissue" e pili ana i nā mea i loko o ko mākou kino e like me nā ʻiʻo, nā ʻiʻo momona, nā kīʻaha koko, a me nā aʻalolo. No laila, ulu kēia maʻi kanesa ma ia mau wahi.

Hoʻomaka pinepine ia ma ke ʻano he puʻupuʻu ma kou mau lima, nā lima, nā manamana lima, nā wāwae haʻahaʻa, a i ʻole nā ​​​​​​kapuaʻi o kou mau wāwae . Eia nō naʻe, hiki ke ulu aʻe ma nā wahi āpau o kou kino. I kekahi manawa, hiki ke ulu aʻe ma mua o hoʻokahi puʻupuʻu. Hoʻomohala pū kekahi poʻe i nā ʻeha ma ka ʻili ma kahi o nā puʻupuʻu.

ʻO ka mea maikaʻi loa, he kanesa lohi loa ka ulu ʻana o ka epithelioid sarcoma. E noʻonoʻo wale, loaʻa paha i kekahi poʻe kēia ʻano kanesa no nā mahina, a hiki i nā makahiki, me ka ʻole o ka hōʻike ʻana i kekahi mau hōʻailona. ʻO ia hoʻi, hiki iā ia ke ulu i loko o kou kino me ka ʻike ʻole ʻoe.

Ua kapa ʻia kēia he epithelial sarcoma. ʻElua ʻano nui o kēia: distal a me proximal. E nānā kākou i kēlā.

Aia kekahi mau ʻano o kēia? He aha lākou?

ʻAe, e like me kā mākou i ʻōlelo ai ma mua, ʻelua ʻano nui o ka epithelioid sarcoma.

• ʻAno Distal: ʻO kēia ke ʻano maʻamau . ʻO "Distal" ke ʻano mamao loa mai ke kikowaena o ke kino. ʻO ia hoʻi, ʻo kēia ʻano ka mea maʻamau ma nā wahi e like me kou mau lima, nā wāwae, ke alo o kou mau lima, a me ka ʻaoʻao haʻahaʻa o kou mau wāwae .

• ʻAno Proximal: ʻO kēia ke ʻano kakaikahi loa . ʻO "Proximal" ke ʻano kokoke i ke kikowaena o ke kino. No laila, hiki i kēia Proximal Epithelioid Sarcoma (PES) ke ulu ma nā wahi e like me kou umauma, ʻōpū, armpits, genitals (e like me ka penis a i ʻole vulva), a i ʻole ke poʻo a me ka ʻāʻī .

ʻO ka maʻamau, ʻoi aku ka nui o kēia ʻano proximal ma mua o kēlā ʻano distal.Hoʻouka kaua. ʻO ia hoʻi, hiki ke laha wikiwiki a ʻoi aku ka ʻino. Ma muli o kēlā, hiki ke paʻakikī iki ka mālama ʻana.

Pehea ka maʻamau o ka epithelioid sarcoma? ʻO wai ka mea e loaʻa pinepine ai?

He maʻi kanesa laha ʻole kēia. E noʻonoʻo wale, aia ma mua o 50 mau ʻano sarcoma palupalu. ʻO lākou a pau i hui pū ʻia, he 1% o nā maʻi kanesa a pau i nā pākeke. A laila, ʻo kēia sarcoma epithelioid, he helu liʻiliʻi loa ia, ma kahi o 1% o kēlā mau sarcoma palupalu. ʻO ia hoʻi, he mea laha ʻole maoli nō ia.

Wahi a nā loea, ʻoiai ma kahi ʻāina e like me ʻAmelika, aia ma lalo o 1,000 mau kānaka me kēia epithelioid sarcoma i kēia manawa. No laila hiki iā ʻoe ke noʻonoʻo i ka laha ʻole o kēia.

ʻO ka maʻamau,

• ʻO ke ʻano distal ES - ke ʻano maʻamau - hoʻopilikia nui i nā ʻōpio a me nā mākua ʻōpio .
• ʻO ke ʻano Proximal ES - ke ʻano kakaikahi, ʻoi aku ka koʻikoʻi - ʻike pinepine ʻia i nā pākeke .

He aha nā hōʻailona? Pehea ʻoe e ʻike ai?

I nā pae mua, ʻaʻole paha e hōʻike ka epithelioid sarcoma i kekahi mau hōʻailona. ʻO ke ʻano kēia ʻaʻole paha ʻoe e ʻike i kekahi mea hewa me ia. Eia nō naʻe, i ka ulu ʻana o ka puʻupuʻu, e ʻike paha ʻoe i nā hōʻailona e like me:

• Puka mai kahi puʻupuʻu hou a pehu paha . Hiki ke liʻiliʻi a nui paha kēia.
• Hoʻokumu ʻia nā ʻeha ma ka ʻili kahi i loaʻa ai ka puʻupuʻu, e like me kahi ʻoki liʻiliʻi a ʻeha paha.
• ʻIke ʻia ka ʻeha . Akā hiki wale kēia inā nui iki ka puʻupuʻu a kaomi i nā ʻiʻo a i ʻole nā ​​​​aʻalolo a puni. ʻAʻole ʻike nā kānaka a pau i ka ʻeha.
• Me he mea lā ua nui aʻe kahi puʻupuʻu i waiho ʻia ma laila no ka manawa lōʻihi .

He mea nui: Inā ʻike ʻoe i kahi puʻupuʻu hou a i ʻole ka pehu ʻana e like me kēia ma nā wahi āpau o kou kino, a inā manaʻo ʻoe e ulu nui ana kekahi puʻupuʻu, e ʻike pono i ke kauka . He mea maʻalahi paha ia, akā ʻoi aku ka maikaʻi o ka nānā ʻana.

No ke aha e hana ʻia ai kēia? He aha nā kumu?

ʻO kaʻoiaʻiʻo, ʻaʻole hiki i nā kauka ke ʻōlelo maopopo i ke kumu o ka epithelioid sarcoma. Eia nō naʻe, ua ʻike ʻia e ka noiʻi ua pili ia me kahi ʻano ʻē i loko o kahi gene i kapa ʻia ʻo SMARCB1 . ʻO kēia gene ka mea e haʻi aku i ko mākou kino e hana i nā protein. Hana pinepine ʻia kēia mutation gene i ka wā o ke ola. ʻO ia hoʻi , ʻaʻole ia he mea i hānau ʻia me ʻoe, i ka hapa nui o nā hihia.

E like me ka hapa nui o nā sarcomas palupalu, ulu pinepine nā sarcomas epithelioid me ke kumu ʻole . Eia nō naʻe, ʻike pinepine ʻia lākou ma hope o kahi maʻi kanesa ma mua.ʻOi aku ka kiʻekiʻe o ka pilikia o ka hoʻomohala ʻana i kēia no ka poʻe i hana ʻia i ka radiation therapy.

Eia kekahi, ua ʻike nā loea he hiki i ka poʻe me kekahi mau maʻi kanesa ʻohana ke piʻi iki ka pilikia o ka hoʻomohala ʻana i ka epithelioid sarcoma. ʻO kekahi o kēia mau kūlana:

• ʻO ka maʻi Gardner
• ʻAno Neurofibromatosis 1 a me ke ʻano 2
• ʻO ka Retinoblastoma
• ʻO ka maʻi Li-Fraumeni
• ʻO ka paʻakikī o ka sclerosis tuberous
• ʻO ka maʻi Werner
• ʻO ka maʻi Gorlin

He mea paʻakikī iki kēia, akā he mea maikaʻi ke ʻike. Inā loaʻa iā ʻoe kēia maʻi, e kamaʻilio me kāu kauka no ka ʻōlelo aʻoaʻo hou aku.

Ke laha nei kēia maʻi ma ke kino holoʻokoʻa?

I ka hapanui o nā hihia, ʻaʻole e laha ka epithelioid sarcoma (metastasize) i nā wahi ʻē aʻe. ʻO ia hoʻi, noho ia ma kahi i hoʻomaka ai. Eia nō naʻe, i kekahi manawa, ʻoiai nā ʻano ʻoi aku ka ikaika e like me ke ʻano proximal, hiki iā ia ke laha. Inā hana ia, ʻoi aku ka nui o ka hele ʻana i kou mau lymph nodes, māmā, a me nā iwi .

Pehea ʻoe e ʻike ai i kēia? (Diagnosis)

E hana kekahi kauka i kekahi mau hoʻokolohua e ʻike ai i ka epithelioid sarcoma. ʻO nā mea nui:

• Hoʻokolokolo kino : E nānā ke kauka iā ʻoe, e nānā i nā mea e like me kahi o ka puʻupuʻu a me kona nui.
• Biopsy: ʻO kēia ka hoʻāʻo koʻikoʻi loa . Lawe ʻia kahi ʻāpana liʻiliʻi loa o ka puʻupuʻu a nānā ʻia ma lalo o kahi microscope. A laila hiki iā mākou ke ʻike pono inā he maʻi ʻaʻai ia, a inā pēlā, he aha ke ʻano.
• Nā hoʻāʻo koko no ka maʻi kanesa: Hiki ke loaʻa kekahi mau māka kanesa i loko o ke koko.
• MRI scan (Magnetic Resonance Imaging - MRI): Hiki i kēia ke ʻike maopopo i kahi o ka puʻupuʻu, kona nui, a inā ua pālahalaha i nā ʻiʻo a puni.
• CT scan (Computed Tomography - CT scans): Hiki i kēia ke nānā aku i ka puʻupuʻu a ʻike inā ua pālahalaha ke kanesa i nā wahi ʻē aʻe, e like me nā māmā.
• ʻIke PET (Positron Emission Tomography - PET scans): Kōkua kēia i ka ʻike ʻana i nā wahi o ke kino kahi e hana nei nā hunaola kanesa.

ʻAʻole paha ʻoe e pono e hana i kēia mau hoʻokolohua a pau. Na kāu kauka e hoʻoholo i nā hoʻokolohua e pono ai ma muli o kou kūlana.

He aha ka lāʻau lapaʻau?

E koho kāu kauka i kahi hoʻolālā lapaʻau e pili ana i kekahi mau kumu, me ka nui o ka puʻupuʻu, kona wahi, inā ua pālahalaha ke kanesa i nā wahi ʻē aʻe, ka hiki i kou kino ke ho'ōla, a me kāu mau makemake.

ʻoki kino

ʻO ka lāʻau lapaʻau nui a maʻamau no ka epithelioid sarcoma, ʻo ia ka wehe ʻana i ka puʻupuʻu me ke ʻoki ʻana . Inā ua pālahalaha ke kanesa i nā lymph node kokoke, hiki i ke kauka ʻoki ke wehe iā lākou.

Hoʻōla Pāhawewe

ʻO kēia kekahi lāʻau lapaʻau maʻamau no ke kanesa. Hoʻohana ia i nā kukuna X-ikehu kiʻekiʻe e luku i nā hunaola kanesa. Hiki i nā kauka ke hāʻawi i kēia lāʻau lapaʻau e hoʻēmi i kahi puʻupuʻu ma mua o ke ʻoki ʻana. A i ʻole, hiki ke hoʻohana ʻia e pepehi i nā hunaola kanesa i koe ma hope o ke ʻoki ʻana.

Kemoterapia

Inā ua pālahalaha ke kanesa i nā ʻāpana ʻē aʻe o kou kino, e ʻōlelo paha kāu kauka i ka chemotherapy . Pili kēia i ka hāʻawi ʻana iā ʻoe i nā lāʻau lapaʻau kūikawā e pepehi i nā hunaola kanesa. Hāʻawi pinepine ʻia kēia mau lāʻau lapaʻau ma ke ʻano intravenous. Akā hiki ke hāʻawi ʻia iā lākou ma ke ʻano he mau pila, he wai, he kirīmi i hoʻopili ʻia i ka ʻili, a i ʻole he injection.

Lapaʻau Lāʻau i Hoʻolālā ʻia

He lāʻau lapaʻau hou kēia. Pili ia i ka hāʻawi ʻana i nā lāʻau lapaʻau e kuhikuhi wale ana i nā genes a me nā protein e kāohi ana i ke ʻano o ka ulu ʻana a me ka māhele ʻana o nā hunaola kanesa. ʻO ke ʻano kēia, ʻaʻole hiki ke hōʻeha ʻia nā hunaola olakino. Nui nā ʻano lāʻau lapaʻau i hoʻohana ʻia no kēia. E hana kāu kauka i kahi hoʻolālā lapaʻau kūikawā nou e pili ana i kou kūlana. ʻO Tazemetostat kahi ʻano lāʻau lapaʻau i hoʻohana ʻia no ka epithelioid sarcoma. Kōkua ia i ka mālama ʻana i nā hunaola kanesa ʻaʻole hiki ke wehe loa ʻia e ke ʻoki kino.

Hiki ke pale ʻia kēia mai ka hana ʻana?

ʻO ka mea kaumaha, no ka mea , ulu pinepine ka epithelioid sarcoma me ke kumu ʻole, ʻaʻohe ala e pale aku ai i kona ulu ʻana . ʻO ia hoʻi, he paʻakikī ke ʻōlelo, "Inā ʻoe e hana i kēia, ʻaʻole ia e hana."

He aha ka mea e hana ai inā loaʻa iā ʻoe ka epithelioid sarcoma? Hiki ke ho'ōla ʻia?

He mea maʻamau ka makaʻu ke lohe ʻoe i kēia. Eia nō naʻe, he maʻi hiki ke mālama ʻia ka epithelioid sarcoma , ʻoiai inā ʻike mua ʻia . E hana kāu kauka i kekahi mau hoʻokolohua e ʻike ai i ka nui o ka puʻupuʻu a inā ua laha aku i nā wahi ʻē aʻe. A laila, e hana lākou i kahi hoʻolālā lapaʻau kūpono iā ʻoe.

Aia paha he hui kauka e mālama ana iā ʻoe. Eia kekahi o lākou:

• ʻO kāu kauka mālama mua ( ke kauka nāna e ʻike mau iā ʻoe).
• Nā Oncologists: ʻO kēia mau mea me nā oncologists orthopedic, nā kauka ʻokiʻoki oncology, a me nā kauka e lawelawe ana i ka chemotherapy a me ka radiation therapy.
• Nā Kauka ʻili: No nā pilikia ʻili.
• Nā Kauka Pathology: ʻO ka poʻe e nānā i kāu mau hōʻike koko a me ka biopsy a hāʻawi iā ʻoe i nā kikoʻī.
• Nā Luna Hoʻōla: Nā poʻe e kōkua iā ʻoe e hoʻoponopono i ke kaumaha a me nā makaʻu e hele mai me kahi maʻi e like me kēia.

ʻO ke ala wale nō e ho'ōla loa ai i ka epithelioid sarcoma, ʻo ia ka wehe loa ʻana i ka puʻupuʻu me ke ʻoki kino . Eia nō naʻe, ʻaʻole hiki ke wehe loa ʻia.

Inā ʻaʻole hiki i ke kauka lapaʻau ke wehe loa i ka puʻupuʻu, e paipai pinepine kāu kauka i ka hui pū ʻana o nā lāʻau lapaʻau e kāohi i kou kūlana. No ka mea, he kanesa lohi ka ulu ʻana o ka epithelioid sarcoma, hiki i nā poʻe he nui me kēia maʻi ke ola lōʻihi a hauʻoli .

Nui nā hōʻike noiʻi e pili ana i ka nui o ke ola ʻana o kēia maʻi. Eia nō naʻe, no ka mea he maʻi laha ʻole loa ia, ʻokoʻa loa nā helu helu. Wahi a kekahi mau hōʻike, ʻo ka nui o ke ola ʻana o ʻelima makahiki mai 25% a 92%. Aia ia i nā kumu he nui, e like me ke ʻano o ka maʻi a me ka pane ʻana i ka lāʻau lapaʻau.

Āhea wau e ʻike ai i ke kauka?

Inā ʻike ʻoe i kahi puʻupuʻu ʻē a i ʻole ka pehu ʻana ma kekahi wahi o kou kino, mai hoʻowahāwahā iā ia. E ʻike pono i ke kauka. ʻO ka poʻe me ka epithelioid sarcoma e loaʻa pinepine nā puʻupuʻu ma nā lima, nā lima, nā manamana lima, nā wāwae haʻahaʻa, a i ʻole nā ​​​​​​kapuaʻi o nā wāwae. Akā e hoʻomanaʻo, hiki i kēia mau puʻupuʻu ke ulu ma nā wahi āpau o ke kino.

He aha nā nīnau āu e nīnau ai i ke kauka?

Inā ʻike ʻia ʻoe a i ʻole kahi mea aloha me ka epithelioid sarcoma, eia kekahi mau nīnau hiki iā ʻoe ke nīnau i kāu kauka:

• Aia i hea ka puʻupuʻu?
• Hoʻokahi wale nō koʻu puʻupuʻu? A i ʻole he mau mea ʻē aʻe?
• Ua laha anei ke kanesa i nā ʻāpana ʻē aʻe o ke kino?
• He aha ka lāʻau lapaʻau āu e paipai nei?
• Pehea ka lōʻihi o kaʻu lāʻau lapaʻau?
• Pehea koʻu manaʻo i ka wā o ka mālama ʻana? (Nā mea e like me nā hopena ʻaoʻao)
• Aia kekahi mau wahi e hiki ai iaʻu ke aʻo hou aʻe e pili ana i kēia? (e like me nā pūnaewele hilinaʻi, nā puke)

He mea maʻamau ka makaʻu, ka huhū, a me ka hoʻonāukiuki ke loaʻa iā ʻoe kahi hōʻailona e like me kēia. E kamaʻilio me kāu kauka e pili ana i nā mea e manaʻo ai ma mua, i ka wā, a ma hope o ka mālama ʻana. Hiki nō hoʻi ke kōkua i ke kamaʻilio ʻana me kahi kākāʻōlelo a mea hoʻoponopono paha. Hiki iā lākou ke kōkua iā ʻoe e hoʻoponopono i nā manaʻo paʻakikī āu e hele nei i kahi manawa e like me kēia. Inā hiki, e hui pū me kahi hui kākoʻo me nā poʻe e hele nei i ka mea like me ʻoe. Hiki i kēia ke kōkua iā ʻoe e emi iho ka noho mehameha.

Leka Lawe-Home

• He maʻi ʻaʻai palupalu koʻikoʻi ka epithelioid sarcoma a laha ʻole loa .
• He pinepine nā puʻupuʻu ma nā lālāHiki ke ʻike ʻia me he ʻulaʻula lā, i kekahi manawa me nā ʻeha ʻili.
• ʻAʻole paha e ʻike ʻia nā hōʻailona i nā pae mua.
• Ua pili ia me kahi kīnā i loko o kahi gene i kapa ʻia ʻo SMARCB1 , akā ʻaʻole maopopo ke kumu pololei.
• ʻO ke ʻoki kino ke ʻano lapaʻau nui . Hoʻohana pū ʻia ka radiation therapy, chemotherapy, a me nā lāʻau lapaʻau i kuhikuhi ʻia.
• He paʻakikī ke pale aku , akā inā ʻike mua ʻia, hiki ke mālama ʻia .
• Inā ʻike ʻoe i kahi puʻupuʻu hou ma kou kino, e ʻike koke i ke kauka.
• Mai makaʻu, mai hopohopo, a e hahai i nā ʻōlelo aʻoaʻo lapaʻau kūpono . ʻAʻole ʻoe hoʻokahi, aia nā kauka a me nā poʻe aloha e kōkua iā ʻoe.

E hoʻomanaʻo, no ka ʻike laulā wale nō kēia ʻatikala. Inā he mau hopohopo kāu, ʻoi aku ka maikaʻi o ke kūkākūkā ʻana me ke kauka.