Ua lohe paha ʻoe i kahi moʻolelo ʻohana o ka maʻi kanesa? A i ʻole he kanaka ʻōpio e ulu ana i kahi maʻi kanesa e pili pinepine ana i ka poʻe ʻelemakule? I kekahi manawa aia paha ke kumu ma hope o kēia mau mea a mākou i ʻike ʻole ai. ʻO ia ka mea a mākou e kamaʻilio ai i kēia lā, kahi maʻi genetic kakaʻikahi e holo ana i loko o nā ʻohana a hoʻonui nui i ka pilikia o ka maʻi kanesa. Ua kapa ʻia ʻo Li-Fraumeni Syndrome.
I ka ʻōlelo maʻalahi, he aha ka Li-Fraumeni Syndrome?
He maʻi hoʻoilina laha ʻole kēia. Hoʻokumu ʻia ia e kahi mutation i loko o kekahi o nā genes i loko o ko kākou kino. Hoʻonui nui kēia loli hoʻoilina i ka manawa kūpono a i ʻole ka pilikia o ka loaʻa ʻana o hoʻokahi a ʻoi aku paha ʻano maʻi kanesa iā ʻoe a me kou ʻohana.
E noʻonoʻo i kēia: ʻO kahi kanaka me kēia maʻi he 90% ka manawa e loaʻa ai ka maʻi kanesa i ka hiki ʻana i ka makahiki 60. A, ma kahi o ka hapalua o kēia poʻe e loaʻa ai ka maʻi kanesa ma mua o ka hiki ʻana i ka makahiki 40. ʻOi aku hoʻi, ʻo nā wahine me Li-Fraumeni Syndrome he kokoke i 100% ka manawa e loaʻa ai ka maʻi kanesa umauma i ko lākou ola.
He mea weliweli iki paha kēia. Akā, ʻo ka mea nui, ʻoiai ʻaʻole hiki iā kākou ke pale aku i kēia maʻi, ma ka loaʻa ʻana o nā hoʻokolohua maʻi kanesa i ka wā mua a me ka maʻamau a me ka loaʻa ʻana o ka lāʻau lapaʻau e pono ai , hiki iā kākou ke kaupalena nui i kona hopena i ko kākou ola.
Pehea ka maʻamau o kēia ʻano?
He maʻi laha ʻole ka Li-Fraumeni Syndrome. Ua loaʻa i nā kānaka noiʻi ma kahi o 1,000 mau ʻohana ma ka honua holoʻokoʻa me kēia hoʻololi ʻana o ka genetic. No laila, ʻaʻohe pono e makaʻu pono ʻole iā ia.
He aha nā hōʻailona o ka maʻi Li-Fraumeni?
ʻO ka mea kūikawā ma ʻaneʻi, ʻaʻohe hōʻailona kikoʻī e pili ana i ke kūlana i kapa ʻia ʻo Li-Fraumeni Syndrome. ʻO ia hoʻi, ʻaʻole ʻike ke kanaka me kēia kūlana i kekahi loli ma waho.
No laila pehea ʻoe e ʻike ai i kēia? ʻO ka hōʻailona nui o kēia maʻi ka hiki ʻana mai o kekahi mau ʻano maʻi kanesa i ka wā ʻōpiopio . No laila, ʻo nā hōʻailona āu e ʻike ai e pili ana i ke ʻano o ka maʻi kanesa āu. No ka laʻana, e hōʻike ka maʻi kanesa o ka lolo i nā hōʻailona e pili ana i kēlā, a e hōʻike ka maʻi kanesa o ka umauma i nā hōʻailona e pili ana i kēlā.
He aha nā ʻano maʻi kanesa e pili pinepine ʻia me kēia maʻi?
Ua pili aku ma mua o ʻumi ʻano maʻi kanesa i ka Li-Fraumeni Syndrome. He mea maʻamau kekahi mau maʻi kanesa i ka poʻe me ke kūlana i kapa ʻia ai lākou he "core cancers." E nānā kākou i ke ʻano o lākou.
| Māhele maʻi ʻaʻai | Wehewehena |
|---|---|
| Nā maʻi kanesa koʻikoʻi | |
| Nā Sarcomas | Nā maʻi ʻaʻai e kū ana i nā iwi (Osteosarcoma) a me nā ʻiʻo palupalu (Soft Tissue Sarcoma). |
| Ka maʻi ʻaʻai umauma | Loaʻa i nā wāhine me kēia maʻi ka pilikia o ka loaʻa ʻana i kēia maʻi i ko lākou ola holoʻokoʻa. |
| Ka maʻi ʻaʻai lolo | Hoʻokomo pū ʻia kēia me nā ʻano like ʻole e like me Gliomas, Choroid Plexus Carcinoma, a me Medulloblastoma. |
| ʻO ke kanesa Adrenocortical | He maʻi ʻaʻai e ulu ana ma ka papa waho o nā kelepa adrenal, aia ma luna o ko kākou mau puʻupaʻa. |
| Leukemia | ʻO kēia ka maʻi leukemia koʻikoʻi, kahi maʻi ʻaʻai o nā hunaola koko. |
| Nā maʻi ʻē aʻe i pili ʻole ʻia | |
| Ka maʻi ʻaʻai kolona, Ka maʻi ʻaʻai puʻupaʻa, Lymphoma, Ka maʻi ʻaʻai māmā, Ka maʻi ʻaʻai ovarian, Ka maʻi ʻaʻai pancreatic, Ka maʻi ʻaʻai prostate, Ka maʻi ʻili, Ka maʻi ʻōpū, Ka maʻi ʻaʻai testicular, Ka maʻi ʻaʻai thyroid. | |
No ke aha lā e kū mai ai kēia kūlana?
I mea e maopopo ai ke kumu o kēia, pono kākou e ʻike e pili ana i kahi kiaʻi liʻiliʻi i loko o ko kākou kino. Loaʻa iā kākou kahi gene i kapa ʻia ʻo TP53 . Ua like ia me kahi "ʻānela kiaʻi" i loko o ko kākou kino. ʻO ka hana nui o kēia gene, ʻo ia ke pale aku i nā pūnaewele i loko o ko kākou kino mai ka ulu ʻana me ke ʻano ʻē a me ke kāohi ʻole ʻia a lilo i mau puʻupuʻu.
ʻO ka protein i hana ʻia e kēia gene TP53 ua kapa ʻia ʻo ka protein P53. ʻO kēia ka mea e hana maoli ai i kēlā hana kiaʻi.
I kēia manawa, ʻo ka mea e hana ʻia i kahi kanaka me ka Li-Fraumeni Syndrome, aia kahi loli, a i ʻole kahi mutation, i loko o ka gene pale i kapa ʻia ʻo TP53 . ʻO ka mea e hana ʻia, ʻaʻole hiki i ka gene ke hana i ka protein P53 e hana pono ana. Ke nalowale kēia gene pale, hoʻomaka nā cell e māhele me ka ʻole o ke kāohi. ʻO ia ka mea e ulu ai i ka maʻi kanesa.
ʻO ka hapa pinepine, hoʻoilina ke keiki i kēia gene TP53 hemahema mai ko lākou mau mākua. Ua kapa ʻia kēia he Autosomal Dominant Pattern . I ka ʻōlelo maʻalahi, ʻoiai inā hoʻokahi wale nō makua e hoʻoilina i kēia gene hemahema, inā paha ʻo ka makuahine a i ʻole ka makuakāne, hiki i ke keiki ke loaʻa i ke kūlana a loaʻa i ka nui o ka pilikia o ka maʻi kanesa .
Eia nō naʻe, he mea kākaʻikahi loa, hiki i kēia loli hoʻoilina ke hana i loko o ke kino o ke kanaka me ka ʻole o kekahi o ka ʻohana i loaʻa i kēia maʻi. Ua kapa ʻia kēia he De Novo Mutation.
Pehea e ʻike ʻia ai kēia maʻi?
Hoʻohana nā kauka i ka hoʻāʻo genetic e ʻike i ke kūlana. Akā ma mua o ka hana ʻana pēlā, e nānā pono lākou i kāu mōʻaukala olakino a me kou ʻohana. Aia kekahi mau kumu e kānalua ai ke kauka i ka Li-Fraumeni Syndrome:
- Inā ua ʻike ʻia ʻoe me ke kanesa sarcoma ma mua o 45 mau makahiki.
- Inā ua ʻike ʻia kekahi o kou mau hoahānau mua (nā mākua, nā kaikaina, nā keiki) i kekahi maʻi kanesa ma mua o 45 mau makahiki.
- Inā ua ʻike ʻia kekahi o kou mau hoahānau kekelē lua (nā kūpuna, nā ʻanakē, nā ʻanakala, nā moʻopuna kāne, nā kaikamahine) i kekahi maʻi kanesa ma mua o ka piha ʻana o 45 makahiki.
Inā hoʻokō ʻia kekahi a ʻoi aku paha o kēia mau pae hoʻohālikelike, hiki i ke kauka ke kuhikuhi iā ʻoe no ka hoʻāʻo genetic.
Inā ua ʻike ʻia ʻoe me kēia maʻi, ʻo ka mea nui aʻe e hana ma kahi papa hana nānā ʻana i ka maʻi kanesa. Ma ka ʻike pinepine ʻana i kāu kauka a me ka hoʻāʻo ʻia ʻana, hiki ke ʻike ʻia a mālama ʻia kekahi maʻi kanesa e ulu ana i ka wā mua loa .
Pehea e mālama ʻia ai?
ʻAʻohe lāʻau lapaʻau kūikawā no ke ʻano hoʻoilina ʻo Li-Fraumeni Syndrome. Hoʻōla nā kauka i nā maʻi ʻaʻai i loaʻa mai ke ʻano. Ua like loa nā lāʻau lapaʻau me nā mea i hāʻawi ʻia i kekahi me ka ʻole o ke ʻano. ʻO kēia mau mea ke ʻoki kino a me ka chemotherapy.
Akā aia kahi ʻokoʻa koʻikoʻi ma ʻaneʻi.
He maʻalahi loa ka poʻe me ka Li-Fraumeni Syndrome i ka radiation. No laila, aia ka pilikia o ka ulu ʻana o nā maʻi kanesa hou me ka radiation therapy. No kēia kumu, e hoʻāʻo kāu kauka e pale a hōʻemi paha i ka radiation therapy inā loaʻa iā ʻoe ka maʻi kanesa.
He aha kāu e manaʻo ai i ka wā e noho ai me kēia maʻi?
ʻO ka ʻike ʻana he Li-Fraumeni Syndrome kou, ʻo ia hoʻi, pono ʻoe a me kou ʻohana e hana i kahi papa hana nānā maʻamau no ka maʻi kanesa. Ua hōʻike ʻia e ka noiʻi ʻana, ʻo ka nānā mau ʻana e hoʻonui nui i nā manawa kūpono e hoʻopakele ai i nā ola o kēia poʻe .
He ʻokoʻa kēia mau papa hana hoʻāʻo no nā keiki a me nā pākeke. He laʻana wale nō kēia. E hana kāu kauka i kahi papa hana kūpono nou.
| Pūʻulu makahiki | Kaawale manawa | Nā hoʻokolohua e hana ʻia |
|---|---|---|
| No nā keiki (a hiki i ka 18 mau makahiki) | ||
| A hiki i ka 18 mau makahiki | I kēlā me kēia 3-4 mahina | He hoʻokolokolo kino piha a me kahi scan ultrasound ʻōpū. |
| Hoʻokahi manawa i kēlā me kēia makahiki | ʻO kahi scan MRI lolo a me kahi scan MRI kino holoʻokoʻa. | |
| No nā mākua | ||
| Nā mākua | I kēlā me kēia 6 mahina | E hoʻokolokolo i ka umauma e ke kauka (mai nā makahiki 20-25). |
| Hoʻokahi manawa i kēlā me kēia makahiki | Hoʻokolokolo kino, MRI umauma, MRI lolo a me ke kino holoʻokoʻa, ultrasound scan ʻōpū a me pelvic, hoʻokolokolo ʻili piha no ka maʻi ʻaʻai ʻili. | |
| I kēlā me kēia 2-3 mau makahiki | Nā hoʻokolohua Colonoscopy a me nā hoʻokolohua Endoscopy Upper. | |
ʻAʻole hiki ke pale ʻia kēia kūlana?
ʻAʻohe ala e pale aku ai i ke kūlana genetic ʻo Li-Fraumeni Syndrome. He mea ia e hele mai me kā mākou mau genes. Akā hiki iā ʻoe ke pale aku i nā mea e hoʻonui ai i kou pilikia o ka maʻi kanesa.
- E pale loa i ka puhipaka .
- E pale i ka inu nui ʻana i ka waiʻona .
- I ka wā e hele ai i waho i ka lā, mai noho lōʻihi i waho me ka ʻole o kahi mea pale e like me ka sunscreen .
Ua wehe ʻia nā umauma ʻelua o kekahi mau wahine ma ke ʻoki ʻana ma mua o ka ulu ʻana o ke kanesa e hōʻemi i ko lākou pilikia o ka maʻi kanesa o ka umauma. Ua kapa ʻia kēia he prophylactic mastectomy .
ʻOiai me kēia mau hana palekana a pau, hiki i ke kanaka me kēia maʻi ke loaʻa i ka maʻi kanesa. ʻO ia ke kumu ʻo ka mea maikaʻi loa e hana ai, ʻo ia ka loaʻa ʻana o nā hoʻokolohua maʻamau a ʻike koke i ka maʻi kanesa inā loaʻa.
Pehea ʻoe e mālama ai iā ʻoe iho a me kou ʻohana?
ʻO ka noho ʻana me kahi kūlana ola holoʻokoʻa e like me kēia hiki ke paʻakikī i ke kino a me ka noʻonoʻo.
1. Mai poina i nā hoʻokolohua: E hahai pololei i kāu papa hana hoʻokolohua maʻi kanesa i ʻōlelo ʻia.
2. Hoʻolālā ʻohana: Inā ʻoe e hoʻolālā ana e loaʻa nā keiki, he mea nui loa ia e kamaʻilio me ke kākāʻōlelo genetic. Pono ʻoe e hoʻomaopopo i ka pilikia o ka hoʻoili ʻana i kēia gene kīnā i kahi keiki.
3. Ola kino: Mai hāpai wale i kēia kaumaha. E ʻimi i ke kōkua o kahi kākāʻōlelo olakino noʻonoʻo i loaʻa ka ʻike e hana pū me nā maʻi kanesa a i ʻole ka poʻe me nā maʻi maʻi mau. E nīnau i kāu kauka e pili ana i nā hui kākoʻo e like me kēia.
Inā ʻike ʻoe i kekahi mau loli ʻē i kou kino, e like me ka ʻeha a i ʻole kahi puʻupuʻu, mai hoʻowahāwahā iā ia, me ka manaʻo, "He mea maʻamau kēia." Mai kali a hiki i kāu hoʻāʻo aʻe, akā e ʻike koke i kāu kauka .
Leka Lawe-Home
- ʻO ka Li-Fraumeni Syndrome kahi maʻi genetic kakaikahi, i hoʻoilina ʻia e hoʻonui nui ai i ka pilikia o ka maʻi kanesa.
- ʻAʻohe hōʻailona e pili ana i kēia maʻi ponoʻī. Hoʻokumu ʻia nā hōʻailona e ka maʻi kanesa e loaʻa mai ana.
- ʻOiai ʻaʻole hiki ke pale ʻia kēia maʻi, ʻo ka nānā mau ʻana i ka maʻi kanesa i ka wā mua e hoʻonui nui i ka manawa e hoʻopakele ai i nā ola.
- Inā loaʻa iā ʻoe kēia maʻi, he mea nui e pale i ka radiation therapy. Ua ʻike paha kāu kauka i kēia.
- Ma muli o ka hoʻoilina kēia, he mea nui e ʻimi i ka ʻōlelo aʻoaʻo lapaʻau e pili ana i ka kuhikuhi ʻana i nā lālā ʻē aʻe o ka ʻohana no ka hoʻāʻo genetic.
- E like me ke olakino kino, he mea nui loa ke olakino noʻonoʻo i kēia huakaʻi. Mai kānalua e ʻimi i ke kōkua inā pono ʻoe.
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