longest survivor of cholangiocarcinoma

My name is Bekki. The mortality rate of HCC-CC was 79.2% (HCC, 77.5%; CC, 93.5%) and the local recurrence rate of HCC-CC was 65.3% (HCC, 74.6%; CC, 88.4%). 2022 Jan 1;13(2):450-464. doi: 10.7150/jca.68264. The overall median survival time was 31 months, and the 1- and 3-year survival rates were 89% and 40%, respectively. I have been thinking a lot lately about long term survival and all it encompasses which is certainly tied to diet, exercise, and keeping healthy. I had a successful liver ablation at that time and tried the FGFR inhibitor Balversa later in the year, but it was not an effective treatment for me. I spent the weekdays in Seattle and flew home on weekends. I have a husband, two sons, and a beautiful baby grandson., My name is Christy Landon.

Currently hes awaiting results of scan to show if tumour has shrunk / slowed growth,,, but with his good blooods of late, Im onlyhopeful it is an improved resulttoo. First and repeat liver resection for primary and recurrent intrahepatic cholangiocarcinoma.

This case suggests that oral UFT might suppress the progression of ICC, contributing to this patient's 11-year survival period. 2019;39 (Suppl 1):S143S155. Most people who develop cholangiocarcinoma are older than 65. It's an 1/2 inch away frm a main artery. Methods: Data were extracted from the Surveillance, Epidemiology, and End Results (SEER) database. DUPAN-2, duke pancreatic monoclonal antigen type-2; CA19-9, carbohydrate antigen 19-9; GC, gemcitabine and cisplatin; CIRT, carbon ion radiotherapy; cCR, clinical complete response; Lt. Would you like email updates of new search results? The tumor stage was T2aN0M0, stage II, based on the TNM . J Adv Pract Oncol. If the cancer has spread to the regional lymph nodes, the 5-year survival rate is 16%. Effectiveness of surgery for recurrent cholangiocarcinoma: A single center experience and brief literature review. I am a 40-year-old mother of two children, Grace, 9, and Connor, 7. Bookshelf 2005-2023 American Society of Clinical Oncology (ASCO). I live in Richmond, VA. Im a retired IT executive. I saw a post by a man claiming to be a 29 year survivor on one of the facebook groups and I know there are more. Cisplatin plus gemcitabine versus gemcitabine for biliary tract cancer. Affected individuals can survive for several months to several years after diagnosis, depending on the location of the cancer and how advanced it is. We have four adult children: Conner, Alexis, Logan, and Alec. The outcome after surgery for intrahepatic cholangiocarcinoma (ICC) with lymph node (LN) metastasis is generally poor, [1][2][3][4] and there are very few reports of long-term survivors after surgery. My second opinion at the Cleveland Clinic with Dr. John Fung was a meeting of hope and compassion. The rush-hour consists of ranchers moving their sheep from one farm to another. [A case report of combined hepatocellular-cholangiocarcinoma whose lymph node recurrence effectively treated with UFT]. france pension reform. After reading several topics regarding this type of cancer, I have gotten very discouraged. One day theyll figure out why.

1,2 In the United States, the age-adjusted incidence of ICC increased from 0.32 in 1975 to 0.85 per 100 000 population in 2000 and has yet to plateau. Its tough as all patients differ. See Additional Information.

Endoscopic palliative therapy allowed a faster community reintegration, but with variable evolution. 2015 Feb 27;13:82. doi: 10.1186/s12957-015-0507-8. 8600 Rockville Pike Makishima H, Yasuda S, Isozaki Y, Kasuya G, Okada N, Miyazaki M, Mohamad O, Matsufuji N, Yamada S, Tsuji H, Kamada T; Liver Cancer Working Group. Comprehensive information for people with cancer, families, and caregivers, from the American Society of Clinical Oncology (ASCO), the voice of the world's oncology professionals. Intrahepatic cholangiocarcinoma (those starting within the liver) five-year survival rates: Extrahepatic bile duct cancers (those starting outside the liver) (includes both perihilar and distal bile duct cancers) five-year survival rates: 2022 WebMD, Inc. All rights reserved.

Cancer of the bile duct (also called cholangiocarcinoma) is extremely rare. RFA Combined With Chemotherapy for Unresectable Cholangiocarcinoma August 25, 2021 updated by: Jianfeng Yang, First People's Hospital of Hangzhou Endoscopic Radiofrequency Ablation Combined With Gemcitabine and S-1 in Paitiens for Unresectable CholangiocarcinomaA Randomized Open-label Clinical Trial Bile ducts connect your liver to your gallbladder and to your small intestine. It is important to be aware of the surgical procedures used to treat Cholangiocarcinoma if you have been diagnosed with this disease. Gemcitabine and cisplatin combination (GC) therapy is the standard first-line treatment; however, second-line approaches are yet to be established. How successful is high-dose (> or = 60 Gy) reirradiation using mainly external beams in salvaging local failures of nasopharyngeal carcinoma? Clipboard, Search History, and several other advanced features are temporarily unavailable. On December 1, 2009 at age 41, I was diagnosed with Intrahepatic Cholangiocarcinoma, aka Bile Duct Cancera very rare, aggressive and difficult to treat type of cancer. Li Q, Zhang J, Chen C, Song T, Qiu Y, Mao X, Wu H, He Y, Cheng Z, Zhai W, Li J, Zhang D, Geng Z, Tang Z. HHS Vulnerability Disclosure, Help Background. The https:// ensures that you are connecting to the Though this is indeed an evil, scary disease, there is always cause for hope. Management of refractory metastatic anal squamous cell carcinoma following disease progression on traditional chemoradiation therapy. The highest 2-year survival rate was 5.5%. -, Nagino M, Ebata T, Yokoyama Y, Igami T, Sugawara G, Takahashi Y, Nimura T. Evolution of surgical treatment for perihilar cholangiocarcinoma: A single-center 34-year review of 574 consecutive resections. We were told that the cancer would be treated with low dose chemotherapy when the jaundice had improved enough but by this point we still had not been told what the primary cancer was. The site is secure.

Hell J Nucl Med. Our family started Craine's Cholangiocarcinoma Crew, a 501c3 that raises funds for research on bile duct cancers. An official website of the United States government. The patients with PCI had the longest median survival time (40.5 months; 95% CI: 17.9-63.0), whereas the shortest was found in patients with ICM . Will My HER2-Positive Breast Cancer Spread? For example, in northeast Thailand, cholangiocarcinoma occurs in about 110 per 100,000 people. 1 CCA represents about 2% of the total reported malignant tumors and 3% of all gastrointestinal cancers. You have a bad weed and the medicines don't usually work.". Next, because this cancer is so rare, there was very little research and clinical trials. My brain would not retain any of it. Objective: Evaluation of the outcome after resection for distal bile duct cancer (DBC) with focus on the impact of microscopic histopathological resection . I feel bitter and sad , why us ?, were good people. When they find a post, no matter how long ago, that answers their questions it is wonderful that they found such a helpful post. I buy good wine and I say, yes, a lot. The new insight of treatment in Cholangiocarcinoma. Qual Life Res. I used to try to make every moment meaningful with my boys and now I just try and savor the moment. I know my body and don't think this chemo is working but I remain positive and will continue to fight. I enjoyed reading everybodys comments. government site. Disclaimer, National Library of Medicine 8600 Rockville Pike Federal government websites often end in .gov or .mil. I get notes from new members that they read about my journey with Teddy even though it started 10 years ago. I had just separated from my husband and I was trying to find my groove as a single mom. This site needs JavaScript to work properly. We prospectively enrolled 133 patients diagnosed with CCA in the 3rd Medical Clinic, Cluj Napoca, over a 4-year period (2005-2009). I am trying to think back to D-Day, and it is all a bit of a blur. Unable to load your collection due to an error, Unable to load your delegates due to an error. Overall survival and local recurrence-free survival rates of HCC-CC were between HCC and CC rates. 1,2 It is also the second most common malignancy of the liver. After surgical recovery, six months of chemotherapy ensued. Demols A, Marchal R, Devire J, Van Laethem JL. Knowledge is power and I felt hope when I learned I had the FGFR mutation and all of the information that was shared on my molecular profiling report. Health-related quality of life in primary hepatic cancer: a systematic review assessing the methodological properties of instruments and a meta-analysis comparing treatment strategies. The 5-year survival rate tells you what percent of people live at least 5 years after the cancer is found. The risk is highest among Hispanic Americans in the U.S. Worldwide it is more common in Southeast Asia and China, Exposure to thorium dioxide (Thorotrast), a radioactive contrast agent used for X-rays until the 1950s (it is no longer used), Other possible risk factors (though the links are not as clear), Exposure to radon or other radioactive chemicals, Exposure to dioxin, nitrosamines, or polychlorinated biphenyls (PCBs), Magnetic resonance cholangiopancreatography (MRCP), Endoscopic retrograde cholangiopancreatography (ERCP), Percutaneous transhepatic cholangiography (PTC), Resectable tumor (potentially curative surgery in cases where the tumor can be completely removed with wide margins; only a small portion of bile duct cancers are resectable when found), Removal of part of the liver (partial hepatectomy), Removal of a whole lobe (right or left part) of the liver (hepatic lobectomy), Removal of part of the liver, along with the bile duct, gallbladder, nearby, Removal of part of the pancreas and small intestine (Whipple procedure), Unresectable cancers (cancer is too advanced or cannot be fully removed through surgery), Palliative surgery to relieve symptoms or treat or prevent complications, Three-dimensional conformal radiation therapy (3D-CRT), Intensity-modulated radiation therapy (IMRT), Brachytherapy (internal radiation therapy), Fibroblast growth factor receptor (FGFR2) inhibitor: pemigatinib (Pemazyre), Drugs are being tested in clinical trials to see if they might help treat bile duct cancer, Palliative therapy to help control or reduce symptoms, Chemotherapy and radiation to relieve problems caused by the tumor(s), Surgery or other treatments to help patients feel better or to help prevent possible problems caused by the cancer, Tumor ablation (radiofrequency ablation or cryosurgery), Localized (no sign that the cancer has spread outside of the bile ducts): 24%, Regional (cancer has spread outside the bile ducts to nearby structures or lymph nodes): 7%, Distant (cancer has spread to distant parts of the body such as the, Localized (no sign that the cancer has spread outside of the bile ducts): 15%, Regional (cancer has spread outside the bile ducts to nearby structures or lymph nodes): 16%, The 5-year survival for these tumors at the regional stage is slightly better than for the localized stage, although the reason for this is not clear, Distant (cancer has spread to distant parts of the body such as the lungs): 6%. I live in the Pacific Northwest on a remote island in the San Juan archipelago. The surgeon shared that I was "lucky" as he was able to get all of the tumor. I refused to give up and had chemotherapy on and off for 2 years now. If the cancer is diagnosed in an early stage, the 5-year survival rate is 17%. Endoscopic palliative therapy allowed a faster community reintegration, but with variable evolution. 2017 Apr;161(4):897-908. doi: 10.1016/j.surg.2016.10.024. -. It is confusing to try to understand what factors lead to re occurrence of cc, and I know there are more long term survivors than what post here. Together, we have raised over $100K, and we have granted money to a genomic research project at the Cleveland Clinic the last two years. Cholangiocarcinoma (bile duct cancer) is a deadly disease.

I am a patient and an advocate, but first, I am a mother to three amazing sons.

Registration is now open for our 2023 Annual Conference. 2012;30:19341940. Ten weeks later, I had my first recurrence. It was Aug. 5, 2015 the day after my 44th birthday. Just wanted to dig up this old topic and put it out there again, remain positive, Pat, Jeans post would be great in survivor section. But I needed surgery to remove the tumor immediately. PSC is an autoimmune disease in which the body's immune system attacks the bile ducts and causes scarring. Sota Y, Einama T, Kobayashi K, Fujinuma I, Tsunenari T, Takihata Y, Iwasaki T, Miyata Y, Okamoto K, Kajiwara Y, Shinto E, Tsujimoto H, Yasuda S, Isozaki Y, Yamada S, Yamamoto J, Ueno H, Kishi Y. Mol Clin Oncol. The outcome of interest was postoperative long-term survival and outcome data collected was limited to overall survival . Post-operative Rehabilitation in Klatskin Tumor: A Rare Case Report. However, T1 ICC usually occurs distant metastasis (DM), and the clinical features of these patients could help clinicians identify the high-risk population. Background Because of its high rate of early recurrence and its poor prognosis, long-term survival after cholangiocarcinoma is rare; therefore, only limited information on patients surviving more than 5 years after surgical therapy is available. This site needs JavaScript to work properly. PDF | Background: This study aimed to determine the role of surgical treatment in patients with stage II intrahepatic cholangiocarcinoma (iCCA).. | Find, read and cite all the research you need . Traditionally, 90-day post-operative complications and death are used to define operative risk. The five-year survival rate for bile duct cancer that hasn't spread outside of the bile ducts is 10% to 15%. Multidisciplinary treatment for hilar and intrahepatic cholangiocarcinoma: A review of the general principles. Being that I am a very HOPE FILLED Montanan, I love the reference to the book you are reading, I will be getting my copy today! I was stage 2b and advised to follow the standard of care; six months of chemo with a cocktail of gemcitabine and cisplatin. Bethesda, MD 20894, Web Policies 5 Notably, . I'm from Glastonbury, CT, or ig inally from Hartford, CT. I'm a retired public elementary school teacher with more than 30 years of teaching experience. Accessibility I enjoy woodworking, sailing, and water sports. Radiotherapy may prolong the survival of patients with advanced biliary tract cancer, and particle radiotherapy delivers a more concentrated dose than conventional radiotherapy to deeper tumors. I am also in California. What Is the Life Expectancy for Cholangiocarcinoma? I live in the Pacific Northwest on a remote island in the San Juan archipelago. Keywords: Somehow hope fuels a refusal to give up, even when your brain knows the harsher realities.

My husband has chosen not to know his prognosis, after all it is just an estimation. This is good to hear. My husband has started his chemotherapy as he cannot have a surgery- no side effects to speak off and all well so far. Cancer.Net GuideBile Duct Cancer (Cholangiocarcinoma). Noji T, Tsuchikawa T, Mizota T, Okamura K, Nakamura T, Tamoto E, Shichinohe T, Hirano S. World J Surg Oncol. Just make the most of everyday. I spend my days at the local elementary school where I am a Special Education teacher. Kong L, Gao J, Hu J, Hu W, Guan X, Lu R, Lu JJ. Combined hepatocellularcholangiocarcinoma (CHC) is a rare subtype of primary liver cancer with biphenotypic characteristics of both hepatocytic and cholangiocytic differentiation, . In conclusion, CIRT is a potential treatment option to control solitary recurrence of biliary tract cancer. Before and transmitted securely. Hilar cholangiocarcinoma (HCCA) is a type of bile duct cancer that occurs in the extrahepatic biliary tree proximal to the origin of the cystic duct [].It is the most common malignancy arising from the biliary tract, accounting for two thirds of cholangiocarcinoma [].The prognosis is generally poor because early diagnosis is difficult and most patients present with advanced disease. Currently, I have more than 30 survivors for whom I am a mentor from across the country. WE NEED 2 KNOW . For extrahepatic bile duct cancer, the average age at diagnosis is 72. carbon ion radiotherapy; chemotherapy; cholangiocarcinoma; cisplatin; gemcitabine; hepatic recurrence.

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I was devastated at diagnosis when I learned there is, MY STORY I am a patient and an advocate, but first, I am a mother to three amazing sons.

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