In need of some advice
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Hi Ricardo,
Welcome to our community. I am sorry to learn that your father is having such difficulty having his illness diagnosed.
We are patients and caregivers in this community, not doctors, so are unable to interpret the medical information you provided. Cholangiocarcinoma can be very difficult to diagnose, so the experience you are having with your father is not uncommon. From what you describe, I understand there is uncertainty over whether his cancer is cholangiocarcinoma or another cancer that has metastasized to the liver and bile ducts, perhaps the cancer found in his colon.
Cholangiocarcinoma is a rare cancer. It can be hard to identify doctors with experience diagnosing and treating it. It would be important at this juncture to be sure there is a doctor on your father’s medical team who knows the cancer well, to help figure out the diagnosis and treatment.
With regards to surgery, it is a potentially curative treatment for some patients. However, not all cholangiocarcinomas can be treated with surgery – surgery would do more harm than good, for example, if the cancer has spread or is located in a place that makes it risky to remove.
I recommend you use the discussion board search engine to look for other patients from Brazil. You could then send a private message through the discussion board asking if they have found expert doctors. One recent member who posts as Fernandaoliviera indicates having cholangiocarcinoma treated in Brazil.
I hope this is helpful. Take care, regards, Mary
P.S. To send a private message, click on the send message button on the posting. Or you can click on the person’s user name that appears on the upper left-hand side of the message. This will take you to a screen with info about that board member. You will see a green “send message” button. Pushing that button will take you to a screen where you can post a private message. When you post, an e-mail is sent to the recipient alerting that there is a new message.
So the question is how we should proceed, we have been to many oncologist and oncological surgeons, all giving different diagnoses and differents way of treating it.
The possibles diagnoses were: the liver injury is a metastasis from the colon; the liver injury is a cholangiocarcinoma; the liver injury is a metastasis from pancreatic uncinate process, near the mesentery and found in the 20/09 MRI and didn’t “glow” in PET-CT of 28/08 because its producing mucin and didnt capture the glicose.The treatment options that were given to us were: Chemotherapy for colon; Chemotherapy for cholangiocarcinoma/pancreas or surgical resection.
We are very confused, because after all these exams, all the doctor won’t agree on a diagnoses and a treatment, plus we don’t know if the doctor who wants my father undergo a surgery just because of money.
Sorry for some mistakes in english, and hope you guys can help me.
Hello,My name is Ricardo and my father may be diagnosed with cholangiocarcinoma. He is 66 years old, chinese but lives in Brazil for more than 30 years. I’m here seeking some advices because his case seems to be complicated.
On 01/08/2018 my father was doing some follow up with an endocrinologist because of his diabetes she asked for some tumor maker on the blood test. CA 19-9: 1709// CEA: 21.9// CA125: 14.8
04/08/2018 MRI of abdomen and pelvis. The report was: rare and minute simple/hamartoma cysts biliary spaces by the parenchyma; slight dilation of the bile duct in the segment VII, the parenchyma in this site presents in diffusion and perfusion alteration, consequent to the biliary obstruction; cystic images in the pancreatic tail, measuring up to 1 cm.
15/08/2018 colonoscopy – Found 8 polyps and one injury in one of the polyps, located in the sigmoid and later the biopsy results were well differentiated adenocarcinoma. Removed 5 out of 8 polyps. Endoscopy – gastric ulcer with signs of activity; biopsy positive for helicobacter pylori.
12/09/2018 Surgery – well differentiated adenocarcinoma, infiltrated until the submucosal layer; Tumor size: 1.5×1.0 cm; tumor budding: present; pathology classification: pT1 pN0; removed 22 cancer-free lymph nodes as well as the remaining polyps.
23/01/2019 colonoscopy for checking if everything was healed for the intestinal transit reconstruction. Removes 2 new polyps.
27/02/2019 Surgery for the reconstruction
25/03/2019 Blood test: CEA: 42.717/04/2019
PET-CT: absence of findings suggestive of hypermetabolic neoplastic tissue detectable to the method
20/07/2019 CT scan of abdomen and pelvis: gallbladder little distended; normodistended gallbladder without alteration by the method; bile duct not dilated.
25/07/2019 Blood test: CEA: 73.81
28/08/2019 PET-CT: emergence of hypermetabolic liver injury in the segment VIII, measuring around 2.7cm and suggestive of cancer.
02/09/2019 Blood test: CEA: 76.3; CA19-9: 7,111; CA125: 28.5
20/09/2019 MRI of abdomen and pelvis w/MRCP: liver with nodule in segment VIII, adjacent to the right and middle hepatic pathways and measuring 2.6×2.2cm. Is more evident the dilation of the intrahepatic bile duct dilatation in segment VIII and emergence of other dilatations in segments II, III and V. arose in the hepatic hilum lymphadenopathy, the biggest measuring 1.6cm on the smallest axis. Found as well, tissue with irregular contour, indicating high cellularity, in the mesentery, next to the pancreatic uncinate process.
26/09/2019 Blood test: CEA: 94.93; CA19-9: 8,655
02/10/2019 liver nodule biopsy (trucut): adenocarcinoma with mucin production focus, IHC: CK7+, CK20-, CDX2+, Caderina-17+, CA 19-9+, SATB2-; healthy liver biopsy (trucut): chronic hepatitis;
03/10/2019 Started Xeloda (4+4) 1 cicle;
Blood tests on the days: 26/09, 10/10 and 16/10 with the results respectively:
CEA: 94.9//128.2//118.8
CA19-9: 8,665//10,000//9,569
Timeline:
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