Barangkali tulisan/komentar saya bisa berguna tentang perawatan kanker di Jakarta yg kurang memuaskan. Maka dari itu pasien XXX pergi ke Penang utk melanjutkan perawatannya. Perawatan di Penang secara medik tidak salah tetapi logistic perawatannya kurang optimal dari segi koordinasi antar dokter.
Kutipan dari komentar saya seperti tsb dibawah adalah dalam bahasa Inggris sebab biasanya diskusinya dlm bhs Inggris dimana anggota2 nya majoritas dari Amerika, sedikit dari Kanada dan Eropa. ----------------------------------------------------------------------------------------------------------------------------------- Komentar saya di milis: Saya pernah membaca tulisan/pandangan2 XXX yg menarik waktu XXX masih belum di diagnose mempunyai kanker Stadium 4. I think the management of his disease at the beginning is not optimal although it might not influence the/his outcome. His cancer was not symtomatic until he developed ascites that suggested the presence of an advanced cancer (likely stage IV). The system of cancer care in Jakarta/Indonesia and Penang based on his/XXX writings is not as good as in US. Nobody was in charge of his management of his disease/cancer in which he, his brother (pediatrician) and his doctors in Jakarta dan Penang seemed NOT well coordinated in the management of his disease. In US, the medical oncologist/MO is always the primary doctor or the leader of the management of any cancer patient. MO refers the patient to different cancer specialists (or other docters, e.g, cardiologist to assess possible cadiotoxicity of cancer drugs) for further diagnosis or treatment. He gets the reports from different consulted doctors. Then he makes further assessment/management from the reports and he is in total controlled of the management of the patient. If XXX were in US, he was unlikely to undergo the postate biopsy, since his symptoms were not very likely from metastatic prostate cancer. Metastatic prostate cancer very very seldom goes to the liver, lung. brain or causes ascites. It usually speads to regional lymphnodes by lymphatic chanels or distantly by blood to the bones. It was a waste of time and money by seeing an urologist. XXX had very high CEA level, colonoscopy was correct prosedure but the cancer was missed in Jakarta's colonoscopy. If he were in US, he would likeky get PET scan early and likely also had a blood test for CA19-9 for possible pancreatic cancer (although not very reliable) because of the symptoms. The other point is that if he/XXX were in US, he would have been told the prognosis truthfully. So patient and family can prepare what are necessary to be done. The metastatic cancer that is widespread within the abdomen, is unlikely/not curable. If his metastatic cancer were only in a few spots/areas in the abdomen and from certain types of cancers (so-called "oligometastatic" disease), the disease/cancer might be still curable. More importantly, quality of life rather than quantity of life should be the goal of the care. Eliminate the suffering as much as possible. BH Jo ---In [email protected], <yyy@...> wrote : Email dari xxx untuk teman2 yang ingin tahu. Semoga beliau bisa mengatasi penderitaannya dan sembuh kembali. yyy Sent from my Samsung device -------- Original message -------- From: xxx<xxx@...> Date: 04/04/2019 9:32 AM (GMT-07:00) To: 'xxx..> Subject: LIKA LIKU MENCARI SUMBER PENYAKIT Teman2, Berkat doa2 dan loving care dari teman2, sampai dengan chemotheraphy kedua, aku masih survive. Namun demikian aku belum bisa terlalu optimistis karena ujung terowongan dimana ada terang masih belum kelihatan. Kankernya yang masih tersisa karena tidak bisa diangkat masih belum mengecil. Menurut Dr. Tang Weng Heng dari Penang Adventist Oncology Centre, kami masih harus menunggu sampai chemotheraphy terakhir, yaitu chemotheraphy ke 8. Mudah2an aku cukup kuat untuk melawan cobaan seperti ini yang bukan hanya menyiksa fisik, akan tetapi juga mental. Perut kembung belum berhenti dan kembung menimbulkan sesak napas dan sesak napas menimbulkan imsomnia/tidak bisa tidur. Kembung akan bertambah kalau makan banyak sekaligus, maka itu harus sedikit demi sedikit. Seluruh tulang belakang dan tulang2 rusuk sakit dan untuk sementara bisa sedikit ditolong dengan obat anti sakit. Kemampuan obat anti sakit hanya terbatas selama 12 jam. Sementara itu berat badanku sudah turun 21 kilo dari 82 kilo menjadi 61 kilo. Setiap hari walaupun badan lemas sekali karena sepertinya level darah merah turun banyak karena chemotheraphy, namun demikian aku terus melakukan kegiatan rutin se-hari2 dikebun dan pada malam hari ketika tidak bisa tidur, aku membereskan rumah dan bersih2 secara terbatas karena aku tidak boleh angkat yang berat2, sebab masalah hernia aku terus berlanjut. Mudah2an operasi bisa dilakukan sesuai jadwal pada bulan Juli yang akan datang. Aku kepingin cape agar kalau cape kadang2 bisa menimbulkan kantuk dan tertidur wlaupun jarang sekali. Agar jangan kecolongan seperti aku, teman2 yang sudah berusia lanjut sebaiknya sesekali ikuti CEA Test di Laboratorium Prodia. Ongkosnya tidak seberapa hanya sekitar Rp.400 ribu. Datang jam 6:00 pagi, jam 4:00 sore hasilnya sudah keluar. Salam, XXX
