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La fundación de colangiocarcinoma (CCF) ahora ofrece servicios de traducción en Español. Por favor publique sus preguntas en Español y un intérprete le va responder.
Posts found: 5
I developed pancreatitis last year from my first ERCP I had. Am a bit scared to go through that again plus my husband is retiring soon and I have no idea about insurance for myself yet. Those procedures are so costly. I also have fibromyalgia, PTSD and IBS so working has become just impossible. Thinking about applying for disability.
Does anyone know what percentage of risk the anomalous pancreaticobiliary junction (without cyst) adds for biliary cancer? I also have IBD which I've learned is another risk factor but would also like to know a percentage there if possible.
Thanks to you all!
Thank you so much! I logged onto the Oncology Nurse Advisor and read today's article. It's very encouraging to know that a urine test for this cancer may be coming along soon. : )
Through ERCP last year, I was diagnosed with this abnormality (APBJ)and learned that my risk for biliary cancer is high. My gallbladder was removed last year as well (but not biopsied). This year my doctor did an endoscopic ultrasound to check for tumors in the bile ducts and found none. I'm wondering, what test can be done, if any, to screen for bile duct cancer in Tis or Stage 0?
Well....Its August 14 and I thought I give an update.......We lost my sister on July 27. Cholangiocarcinoma is one mean and painful disease that I hope no one ever has to endure. I was with my sister the last 3 weeks of her life and it was terrible the pain and suffering she had to go through.
I pray that a cure is found soon.........We asked for donations be sent to the Cholangiocarcinoma Foundation to help with research. My heart goes out to everyone with loved ones with this terrible disease.
My sister and I are very close but there is a distance between where we live... Her life has been very hard and trying......Her husband of 42 yrs was diagnosed with Alpha I Antitripsin disease and had been sick for at least 15 yrs., with the last 3 being very terrible. Downsizing at her place of employment caused her to have to transfer hundreds of miles away just to be able to have insurance coverage for her husband. So.... he stayed at their home (as he was unable to travel) and she had to move and leave him with their 3 grown children to take care of him.............The last 3 years of his life they spent every Christmas with him in the hospital. My sister finally was able to take early retirement so she was able to care for him.......She had been retired about 2 years and got sick this past September.....was sent to the closest big city to a very well known hospital.....Surgery was scheduled thinking she had rupturing ovarian cysts. Buddy did we get the shock of a lifetime...Her ovaries were fine but there was a large spot on her liver...we were told immediately that it was cancer, inoperable, and stage 4.....A different Dr. came in and said that he could do surgery and then treat her with chemo and/or radiation. They chose her to have the surgery......Since then she has gone through chemo AND loosing her dear husband of 42 years, Drs. told us after the surgery she had 9 to 12 months. She is getting no better with the treatment. Last week she wnet for a new scan on Monday and went back Thursday for what should have been her last chemo treatment......instead the Dr. said they were back to square 1.. change the chemo to oral and said she has only weeks left.
I am really having an extremely difficult time with all of this. I loved her husband so much.......he was such good, kind and loving man......never had a bad word for anyone and always believing the best in everyone. And I sooo LOVE my sister and I'm not ready to loose her. I am letting this comsume me....it is all I think about ...I'm already on meds. for this but nothing seems to work.
How do I deal with this so my sister won't see what it is doing to me.....And what do I tell MY family......I don't want to do anything, talk to anyone and this is hard because I work with the public. My husband thinks he has done something to me all the time because I just want to be left alone. When something happens to her, besides my spouse, 2 kids and 3 grand kids all the family I will have left is my Mom who is 88 and a sister that I hardly get along with.
I'm so sorry for all this rambling but I thought it might help me.
I hope to be a new friend and I need all the prayers available.
Posts found: 5
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