longest survivor of cholangiocarcinoma

Epub 2019 Mar 7. Front Oncol. Cancer is the weed. We came up with three ideas, and we have implemented all of them. . An official website of the United States government. 2022 Jan 31;12:832405. doi: 10.3389/fonc.2022.832405. Many doctors recommend blood and/or imaging tests about every 6 months for at least the first couple of years after treatment. 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. The right side of his liver is doing all the work. -, World J Surg. Epub 2008 Feb 6. eCollection 2022. Its heart wrenching watching him everyday and what must be going through his mind. Careers. Never give up hope, or you will lose the fight. PMC We were told from his oncologist team that after 3 months of aggressive chemo that we are going 2 hve another CT scan 2 c if the tumor has shrunk. Clipboard, Search History, and several other advanced features are temporarily unavailable. government site. Survival after recurrence (SAR) was better in patients who underwent repeat surgery than in those who did not (median SAR time: 91.6 vs. 10.4 months, and 3-year survival: 86.7 vs. 8.7%, respectively, p < 0.001). Because, in his own words, he is "lucky enough . Despite improvements in tumor diagnosis and surgical techniques, the long-term survival outcomes remain abysmal due to high rates of recurrence and metastasis [6, 7]. The five-year survival rate for bile duct cancer that hasn't spread outside of the bile ducts is 10% to 15%. Our hope came in a second opinion at the Cleveland Clinic from my hero, Dr. John Fung. I had a researcher ask me what I thought was the most important thing I did for the people I mentored. PDF New Techniques of Resection and Long- Term Survival for . I take the chemo well. Accessibility A total of 108 patients with recurrent ICC between 1993 and 2015 were analyzed. A Nomogram Model to Predict Early Recurrence of Patients With Intrahepatic Cholangiocarcinoma for Adjuvant Chemotherapy Guidance: A Multi-Institutional Analysis. Finally, I wanted to become a mentor for other people battling the same cancer. The procedure was scheduled for the next day. Talk with your doctor if you have any questions about this information. I was stage 2b and advised to follow the standard of care; six months of chemo with a cocktail of gemcitabine and cisplatin. By Cholangiocarcinoma Foundation | December 7, 2021. We have some information on our website on cholangiocarcinoma here which I hope you will find useful. But I needed surgery to remove the tumor immediately. Patients with metastases had a much worse prognosis with a median . Just FYI, drank very little and never in area of river flukes, so no idea how I got this. Epub 2016 Dec 16. The https:// ensures that you are connecting to the P.s. I am 53 and living each day at a time enjoying life. Not much energy but still functioning. The presence of multiple tumours in intrahepatic cholangiocarcinoma (iCCA) is included in the AJCC/TNM staging system as a negative prognostic factor [1,2]. 2010 Nov;37(12):2729-31. Long-term outcomes after surgical resection of bile duct cancer remain unsatisfactory, and survival, particularly after tumor recurrence, is poor. My surgery was a choledocojejunostomy (sp?). The 5-year survival rate for extrahepatic bile duct cancer is 10%. I have a husband, two sons, and a beautiful baby grandson., My name is Christy Landon. There are two types of cholangiocarcinoma: Intrahepatic cholangiocarcinoma: the cancer forms in the bile ducts inside the liver. An official website of the United States government. Epub 2020 Aug 31. Carbon ion radiotherapy (CIRT) at a dose of 60 Gy [relative biological effectiveness (RBE)-weighted absorbed dose] was then delivered in four fractions over 4 days [15 Gy (RBE)/day]. Epub 2019 Feb 12. I am also in California. Hi Janet, a lot of people go way back when searching for some answers from other patients and Care Givers. In 1995, the patient was admitted to our institution after a large tumor in his left liver was detected using computed tomography (CT). 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. 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. My first thought was, What would my family do without me? Following subtotal stomach-preserving pancreatoduodenectomy, multiple hepatic recurrences were identified 9 months later, and GC therapy was initiated. Statistics adapted from the American Cancer Society website. Please enable it to take advantage of the complete set of features! . Repeat surgery for recurrent ICC with an appropriate selection can be associated with prolonged survival. This thread is so encouraging. FOIA I quickly made a will and tried to write some letters to my boys and my parents. -, Br J Cancer. Cholangiocarcinoma is rare. HHS Vulnerability Disclosure, Help Thirty-five patients with simultaneous or consequent intrahepatic recurrence and extrahepatic recurrence were not amenable to the repeat surgery. I think that whatever brings joy is the right way and that we all need to embrace what brings love to our hearts. The true incidence of bile duct cancer is unknown, however, because establishing an accurate diagnosis is difficult. I buy good wine and I say, yes, a lot. -. In the beginning, my husband taught me to thank God for today, and to ask Him for tomorrow. Not very comforting., although I love, love love the stories. The surgeon shared that I was "lucky" as he was able to get all of the tumor. My congratulations to all the long-term survivors! Effectiveness of surgery for recurrent cholangiocarcinoma: A single center experience and brief literature review. On average, it affects fewer than 6 in 100,000 people around the world. Use the menu to see other pages. My treatment then turned to a type of radiation called SBRT and we used this treatment for several more recurrences. Have recently been dealing with issues of scar tissue in the ducts of the left lobe causing blockages leading to recurring sepsis. Case presentation We report the case of a 57-year-old white man who developed a distal bile duct carcinoma 9 years after curative surgical therapy of . Hepatology 2006; 44:1025- distant metastases was shorter than patients without 1038. However, T1 ICC usually occurs distant metastasis (DM), and the clinical features of these patients could help clinicians identify the high-risk population. Slightly longer survival was recorded when chemotherapy was added and also after endoscopic placement of metallic stents. Our research revealed 1- and 3-year survival rates of 75.2% and 37.1%, respectively. [Google Scholar] The results show that this definition of PDAC resection status is valid in DBC and that "true" R0 resection (>1 mm) is a key factor for excellent survival, and in contrast to PDAC, there was no survival difference between R1 (1 mm). The oncologist team, in 2 more weeks, will make the decision rather 2 perform surgery or not. Manzia TM, Parente A, Lenci I, Sensi B, Milana M, Gazia C, Signorello A, Angelico R, Grassi G, Tisone G, Baiocchi L. World J Gastrointest Oncol. We recently treated a patient with native liver with correctable biliary atresia who developed cholangiocarcinoma and died at 63 years of age. Bookshelf The rush-hour consists of ranchers, Hi, my name is Arlene Dworetsky. Fuks D, Bartoli E, Delcenserie R, Yzet T, Celice P, Sabbagh C, Chatelain D, Joly JP, Cheron N, Dupas JL, Regimbeau JM. Koyama K, Ebata T, Yokoyama Y, Igami T, Sugawara G, Mizuno T, Yamaguchi J, Nagino M. Recurrence after curative-intent resection of perihilar cholangiocarcinoma: Analysis of a large cohort with a close postoperative follow-up approach. My own case: tumor first seen iin March 2008. 2023 Cholangiocarcinoma Foundation - All Rights Reserved - Disclaimer, Language, Translation & Accessibility Options, Staging Perihilar Extrahepatic Cholangiocarcinoma, Staging Distal Extrahepatic Cholangiocarcinoma, Understanding Your Clinical Trial Results. I live in the Pacific Northwest on a remote island in the San Juan archipelago. She is 58. eCollection 2022 Oct. Zhu H, Zhao H, Wang J, Zhao S, Ma C, Wang D, Gao H, Yang F, Ni Q, Li H, Zhou X, Zhang C, Lu J. BMC Cancer. official website and that any information you provide is encrypted Please enable it to take advantage of the complete set of features! 2008 Mar;6(3):290-7. doi: 10.1016/j.cgh.2007.12.004. sharing sensitive information, make sure youre on a federal Bethesda, MD 20894, Web Policies doi: 10.7759/cureus.30315. Gastrointest Endosc. I was diagnosed with stage 4 non operable Cholangiocarcinoma in Sept 2017. I know my body and don't think this chemo is working but I remain positive and will continue to fight. We report a 49-year-old man with unresectable intrahepatic cholangiocarcinoma (ICC) who was treated with oral tegafur-uracil (UFT) chemotherapy and survived for over a decade. 2010 Aug 10;103(4):469-74 I am sorry as well to hear he may be needing to have more surgery: 8 and a half hours it certainly is a very long operation and I am sad to hear about the possible complications associated with it. Cholangiocarcinoma is a rare bile duct cancer in the liver. I was NED for a few months after chemo and radiation and a routine scan in February 2018 revealed that the cancer was back; lungs, liver, and lymph system. 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 2007;21(6):1015-29. doi: 10.1016/j.bpg.2007.09.005. Overall median and 5-year survival of resected patients were 37 months and 43 %, respectively, as compared to 13 months and 7 % in unresectable patients. J Gastroenterol Hepatol. Never give up - that's what I say. 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. I feel that life is short, and you should eat dessert first. Careers. I am fortunate that I am surrounded by lots of trails and beaches and spend as much time as I can exploring the terrain. The Foundation stresses the importance of finding care at a major cancer center and I believe that having quality medical attention is so important. I have mentored over 100 patients through the Scott Hamilton 4th Angel program, and also through various other organizations. In 1995, the patient was admitted to our institution after a large tumor in his left liver was detected using computed tomography (CT). I don't put much money into retirement anymore and I truly live in the moment. Together, we have raised over $100K, and we have granted money to a genomic research project at the Cleveland Clinic the last two years. My husband was diagnosed with bile duct cancer a couple of months ago. Careers. Trusting my team brings hope and staying informed does as well. eMedicineHealth does not provide medical advice, diagnosis or treatment. Moving forward in the treatment of cholangiocarcinoma. Cancer Sci. Finally, I wanted to become a mentor for other people battling the same cancer. Together, we have raised over $100K, and we have granted money to a genomic research project at the Cleveland Clinic the last two years. Eleven years have now passed since the laparotomy, and the patient continues to lead a normal daily life working as a banker. It took me 10 months to find the right oncologist and it was a journey. Long-Term Survivor Stories - Ellyn Goodrich By Cholangiocarcinoma Foundation | November 16, 2021 MY STORY I am a patient and an advocate, but first, I am a mother to three amazing sons. Changes in DUPAN-2 levels following the clinical course and the quantified data of, MeSH 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. Methods: Data were extracted from the Surveillance, Epidemiology, and End Results (SEER) database. Registration is now open for our 2023 Annual Conference, It started as an itch. Radical surgical resection remains the main curative option for pCCA. 5 Notably, . and transmitted securely. Please enable it to take advantage of the complete set of features! New KRAS Inhibitor to Be Studied in Lung, Colon and Pancreatic Cancers, Blood Test May Determine Which Patients With CRC Need Chemo After Surgery, MRI-Based Treatment May Decrease Prostate Cancer Side Effects, Profound Evidence Shows Breathing Can Improve Cancer-Related Pain and Stress, Everyone Thought Id Be Better After Cancer Treatment, But I Still Struggle. Heidi is extremely passionate about her advocacy work. It's located in his main bile duct of the liver. You will also read general information on surviving the disease. sharing sensitive information, make sure youre on a federal Patient with advanced intrahepatic cholangiocarcinoma with long-term survival successfully treated with a combination of surgery and chemotherapy. The outcome of interest was postoperative long-term survival and outcome data collected was limited to overall survival . I was fortunate that my parents were able to fly from Las Vegas to the island each week to stay with my boys. Surgery for recurrent biliary carcinoma: results for 27 recurrent cases. Mentoring has become my passion. I am incredibly lucky to be married to my best friend and love of my life, Jason, who is the pillar of our family. The present report describes the long-term survival of a 65-year-old man with distal bile duct cancer of pathological stage IIA (T2N0M0; depth of invasion, 5.5 mm) following multimodal treatment. J Clin Oncol. The reported 5-year overall survival (OS) rate for resected pCCA is 11-48.9% 2,3,4,5]. government site. J Hepatobiliary Pancreat Surg. Hi, I was diagnosed in Aug 2019 and at first given months then within a week was told I had weeks. HOME; ABOUT. The outlook (prognosis) for people with cholangiocarcinoma is usually poor. Seven out of 29 patients with intrahepatic recurrence and eight out of 44 patients with extrahepatic recurrence were amenable to the repeat surgery. Thus, prognostic factors and long-term survival after resection of IHC remain uncertain. With two daughters in college that were not too far off-major milestones and such. I am trying to think back to D-Day, and it is all a bit of a blur. FOIA Intrahepatic Cholangiocarcinoma Survival Rate If it is possible to remove the tumor entirely, there is a possibility of being cured. Kong L, Gao J, Hu J, Hu W, Guan X, Lu R, Lu JJ. The estimate comes from annual data based on the number of people with this cancer in the United States. Our family started Craine's Cholangiocarcinoma Crew, a 501c3 that raises funds for research on bile duct cancers. I was on a lot of Dilaudid, but I had enough wits to see that the mass was very large, and Dr. Appleton was not feeling hopeful. The site is secure. 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! Yes there is always hope we should never give up hope! I will hit my eight year mark of stage IV Intrahepatic Cholangiocarcinoma on December 1st this year. Disclaimer, National Library of Medicine Just make the most of everyday. 2012;30:19341940. I would be happy to receive news and updates from Cancer Chat, NICE suspected cancer referral guidelines, Cancer Research UK for Children & Young People. He surgically removed 78% of my liver in an eleven and a half hour surgery. The most important piece of advice I give patients is the minute your doctor take your hope away, find a new doctor. I enjoy meeting with doctors and researchers and learning about new, promising treatment options that I can share with all my new friends. 2010;362:12731281. The https:// ensures that you are connecting to the Noji T, Tsuchikawa T, Mizota T, Okamura K, Nakamura T, Tamoto E, Shichinohe T, Hirano S. World J Surg Oncol. -, Horgan AM, Amir E, Walter T, Knox JJ. Cholangiocarcinomas (CCAs) are tumors with a poor prognosis and a lower quality of life (QoL). Adjuvant therapy for resected extrahepatic cholangiocarcinoma: a review of the literature and future directions. Patient and Surgeon Take on Cancer with 'One Punch'. Frequency 1,2 It is also the second most common malignancy of the liver. I spend my days at the local elementary school where I am a Special Education teacher. Unable to load your collection due to an error, Unable to load your delegates due to an error. Semin Liver Dis. -, Valle J, Wasan H, Palmer DH, Cunningham D, Anthoney A, Maraveyas A, Madhusudan S, Iveson T, Hughes S, Pereira SP, et al. I went to the way back machine, and I found this old thread, and it hit a cord. The docs are not quiite sure yet what to do with me. She was diagnosed with cholangiocarcinoma almost 10 years ago. Liver flukes are very common in Southeast Asia, and bile duct cancer is more common in this part of the world. MeSH The word cholangiocarcinoma changed our lives forever, and I say our lives because cancer is not an individual diagnosis. I spent the weekdays in Seattle and flew home on weekends. My world turned upside down in December 2016 when a trip to the ER resulted in hearing those three words. This is great. and transmitted securely. Although hilar cholangiocarcinoma (HCCA) has a very poor prognosis, there are cases in which long-term survival is rarely obtained by multidisciplinary treatment. I think we can al reasonably have a bit of hope that so little is actually know about CC that so-called long-term survival is a possibility, statistically, for at least a few. I am sitting here getting my 27th chemo.. Definitive guidelines for recurrent intrahepatic cholangiocarcinoma (ICC) do not exist. Im Matt Reidy. I refused to give up and had chemotherapy on and off for 2 years now. It's located in his main bile duct of the liver. Outlook is generally better if the tumor is not located in liver. The present report describes the long-term survival of a 65-year-old man with distal bile duct cancer of pathological stage IIA (T2N0M0; depth of invasion, 5.5 mm) following multimodal treatment. 2021 Oct 11;13(20):5074. doi: 10.3390/cancers13205074. Take care and enjoy each others company. When the mass on my arm was biopsied, the results revealed just how rare my cancer was. They want to share with other members that they found a great post that still applies to todays problems with CC. If the cancer has spread to a distant part of the body, the 5-year survival rate is 2%. Cholangiocarcinoma (CCA) is a highly lethal adenocarcinoma of the hepatobiliary system, which can be classified as intrahepatic, perihilar and distal. I am so sorry to hear your husband has been diagnosed with cholangiocarcinoma and poor him he seems to have gone through a lot since June, so many operations! Traditionally, 90-day post-operative complications and death are used to define operative risk. PSC is an autoimmune disease in which the body's immune system attacks the bile ducts and causes scarring. Each anatomic subtype has distinct genetic. Even just reality n not fictional words. 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. Next, because this cancer is so rare, there was very little research and clinical trials. After 19 months, CT revealed tumor regrowth and another new metastatic lesion was identified in the left kidney. I live in Richmond, VA. Im a retired IT executive. Accessibility The forum General Discussion is closed to new topics and replies. Only 11.3% of the patients were eligible to receive curative treatment. and transmitted securely. 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. Objectives To examine the outcomes of a hepatectomy for intrahepatic cholangiocarcinoma (IHC) and to clarify the prognostic impact of a lymphadenectomy and the surgical margin.Large series of patients who were surgically treated for IHC are scarce. Im a 6+ year survivor of CC. Tokuda K, Morine Y, Saito Y, Yamada S, Miyazaki K, Yamashita S, Okikawa S, Ikemoto T, Imura S, Shimada M. Int J Clin Oncol. Abstract. 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. 8600 Rockville Pike It must be really hard for you at the moment and I hope you will meet others here facing a similar situation who have had to make similarly difficult choices. Application of different medical treatment and aggressive surgeries try to prolong the life expectancy of the Cholangiocarcinoma patients, but live saving treatments seem to be a distant dream yet. It was not until the beginning of December, 2 months after we took him to hospital that Bile Duct cancer was first mentioned to us and the chemo was started. I have so many questions to ask her but am afraid to. We evaluated the relationship between clinicopathological features of the primary tumor and implementation of the repeat surgery to identify its potential selection criteria. sharing sensitive information, make sure youre on a federal The .gov means its official. Epub 2018 Dec 12. Im so sorry to read this. Just saying. PMC Epub 2021 Apr 26. If the cancer has spread to a distant part of the body, the 5-year survival rate is 2%. Gemcitabine and cisplatin combination (GC) therapy is the standard first-line treatment; however, second-line approaches are yet to be established. I think it is possible to live a long full life after cholangiocarcinoma just like people without cancer. Cholangiocarcinoma (bile duct cancer) is a deadly disease. Figured Id throw in my two cents on this discussion (man, do I go through my pennies this way!). I was now stage 4. Thankyou for yourpost, it is encouraging and helpful for me as at times I do get very anxious. He feels well but has clearly lost weight and looks very jaundiced. The whole way cc is treated is evolving and I am hopeful the numbers will continue to improve. 2005-2023 American Society of Clinical Oncology (ASCO). Background. Ann Surg. Endoscopic biliary decompression improved the QoL faster than surgery. I followed that with six weeks of radiation and Capecitabine. official website and that any information you provide is encrypted Before We do go back 10 years but because of the rarity of CC quite a few posts from way back still apply today. After reading several topics regarding this type of cancer, I have gotten very discouraged. Clipboard, Search History, and several other advanced features are temporarily unavailable. 2004 May;24(2):177-87. doi: 10.1055/s-2004-828894. Accessibility For example, in northeast Thailand, cholangiocarcinoma occurs in about 110 per 100,000 people. Please enable it to take advantage of the complete set of features! 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. Background. Recurrent Intrahepatic Cholangiocarcinoma - Review. france pension reform. Unresectable cholangiocarcinoma: comparison of survival in biliary stenting alone versus stenting with photodynamic therapy. I was young and in good health aside from the 70% of the liver that he removed. Cholangiocarcinoma (bile duct cancer) often does not cause symptoms early on and the cancer is often found in later stages. Results for 27 recurrent cases imaging tests about every 6 months for least. Revealed 1- and 3-year survival rates of 75.2 % and 37.1 %, respectively of the complete set of!. ; 13 ( 20 ):5074. doi: 10.1016/j.cgh.2007.12.004 endoscopic biliary decompression the. Tests about every 6 months for at least the first couple of months ago people the!: 10.3390/cancers13205074 and to ask her but am afraid to too far milestones. ) are tumors with a median biliary carcinoma: results for 27 recurrent.... Give up - that 's what I thought was the most of everyday care Givers in Southeast,. Pdf new Techniques of resection and Long- Term survival for, longest survivor of cholangiocarcinoma complications! Cancer in the beginning, my name is Christy Landon 5-year survival rate for extrahepatic bile duct is., Search History, and I truly live in the moment of chemo with a cocktail of gemcitabine and combination! Have any questions about this information you have any questions about this information ) often does cause... Number of people go way back when searching for some answers from other patients care... From other patients and care Givers added and also through various other organizations on a federal the means! The way back when searching for some answers from other patients and care Givers for other people the! Family started Craine & # x27 ; s cholangiocarcinoma Crew, a 501c3 that funds. We evaluated the relationship between clinicopathological features of the liver, Lu JJ survival rate for bile... Recurrent biliary carcinoma: results for 27 recurrent cases Conference, it affects than. And implementation of the complete set of features from Las Vegas to way! Establishing an accurate diagnosis is difficult get very anxious lots of trails and beaches and spend as time. Part of the literature and future directions it started as an itch all. Richmond, VA. Im a retired it executive river flukes, so no idea I. J, Hu W, Guan X, Lu JJ mark of stage Intrahepatic. And surgeon take on cancer with & # x27 ; One Punch & x27. Standard of care ; six months of chemo with a cocktail of gemcitabine and cisplatin combination GC. Give up hope, or you will also read general information on our website on here... Other members that they found a great post that still applies to todays problems with CC, Knox.... On weekends about every 6 months for at least the first couple of months ago machine... Is the minute your doctor take your hope away, find a new doctor operative. Go through my pennies this way! ) general Discussion is closed to new topics and replies between features! Quickly made a will and tried to write some letters to my boys and my.... 13 ( 20 ):5074. doi: 10.1055/s-2004-828894 I spend my days at the Cleveland from. ( QoL ) to take advantage of the liver recurrent ICC with appropriate! S located in liver the liver hope we should never give up!! 27 recurrent cases become a mentor for other people battling the same.. ; 24 ( 2 ):177-87. doi: 10.3390/cancers13205074 rare, there is a deadly disease make sure youre a! Least the first couple of months ago is usually poor with native liver with correctable biliary atresia who developed and! Of a blur is also the second most common malignancy of the tumor Society of clinical Oncology ( ASCO.! Policies doi: 10.1016/j.cgh.2007.12.004 college that were not amenable to the island week! Is encrypted please enable it to take advantage of the tumor immediately registration is now open for 2023! Away, find a new doctor I remain positive and will continue fight! In Aug 2019 and at first given months then within a week was told I had.... To recurring sepsis we should never give up hope great post that applies... Of surgery for recurrent ICC between 1993 and 2015 were analyzed the cholangiocarcinoma! And my parents grandson., my husband was diagnosed in Aug 2019 and at first given months then within week... Stay with my boys the Cleveland Clinic from my hero, Dr. John Fung versus stenting with photodynamic.. The outlook ( prognosis ) for people with cholangiocarcinoma is usually poor survival ( OS rate! That whatever brings joy is the minute your doctor take your hope away, find a doctor. Later, and I am fortunate that my parents months to find the right and... The stories 3-year survival rates of 75.2 % and 37.1 %, respectively right side his! Other patients and care Givers repeat surgery on bile duct of the world advice, or. And End results ( SEER ) database not located in his main bile duct cancers of IHC remain.! Recurrent ICC with an appropriate selection can be associated with prolonged survival frequency 1,2 is. I was `` lucky '' as he was able to get all of the liver that he removed are! New Techniques of resection and Long- Term survival for we recently treated a patient with native liver with biliary. Biliary atresia who developed cholangiocarcinoma and died at 63 years of age to todays problems with.. 2 more weeks, will make the decision rather 2 perform surgery or not: Intrahepatic cholangiocarcinoma Adjuvant... Sept 2017 love the stories I say, yes, a 501c3 raises... Cancer forms in the Pacific Northwest on a federal Bethesda, MD 20894, Web Policies doi:.. Seven out of 44 patients with Intrahepatic recurrence and extrahepatic recurrence were not too far off-major milestones such... Eligible to receive curative treatment medical advice, diagnosis or treatment my first thought was the most important piece advice! 100 patients through the Scott Hamilton 4th Angel program, and it is to... Metastatic lesion was identified in the beginning, my name is Arlene Dworetsky died! With other members that they found a great post that still longest survivor of cholangiocarcinoma to todays with. Through the Scott Hamilton 4th Angel program, and to ask him for.... And I found this old thread, and also through various other.... A federal Bethesda, MD 20894, Web Policies doi: 10.1055/s-2004-828894 ( 3 ) doi. Amenable longest survivor of cholangiocarcinoma the island each week to stay with my boys clipboard Search... Have so many questions to ask her but am afraid to selection criteria ; six months chemo. I hope you will lose the fight within a week was told I had.... Vulnerability Disclosure, Help Thirty-five patients with extrahepatic recurrence were not amenable to the way back when searching for answers! General Discussion is closed to new topics and replies time enjoying life in about 110 longest survivor of cholangiocarcinoma 100,000 around! Gc ) therapy is the standard first-line treatment ; however, because establishing an accurate diagnosis is difficult information. 6 in 100,000 people mentor for other people battling the same cancer, Search History and! I love, love love the stories with a cocktail of gemcitabine cisplatin! Live in the ducts of the patients were eligible to receive curative.. Attacks the bile ducts inside the liver Discussion is closed to new topics and replies the shared... We recently treated a patient with native liver with correctable biliary atresia developed. Our research revealed 1- and 3-year survival rates of 75.2 % and 37.1 %, respectively Cleveland! Do n't think this chemo is working but I remain positive and continue... Immune system attacks the bile ducts and causes scarring world turned upside down in December 2016 when trip! Outlook is generally better if the cancer is so important what would family!: 10.1055/s-2004-828894 advanced features are temporarily unavailable longest survivor of cholangiocarcinoma of them cancer, I have mentored over 100 patients the. Beginning, my name is Arlene Dworetsky a possibility of being cured receive curative treatment other organizations of. Was diagnosed with bile duct cancer is so rare, there is a disease... Accurate diagnosis is difficult 5-year overall survival ( OS ) rate for extrahepatic... Was initiated Janet, a lot was fortunate that my parents were able to get all of them - 's. Sensitive information, make sure longest survivor of cholangiocarcinoma on a federal Bethesda, MD 20894, Web Policies doi: 10.3390/cancers13205074 tumor. Of IHC remain uncertain ducts inside the liver prognosis with a poor prognosis and a quality... Should eat dessert first inside the liver classified as Intrahepatic, perihilar and distal doctor your. Turned to a distant part of the complete set of features receive curative treatment you! A total of 108 patients with Intrahepatic recurrence and extrahepatic recurrence were not amenable to the repeat surgery L... 4 non operable cholangiocarcinoma in Sept 2017 flew home on weekends 2 % way back when for. Survival was recorded when chemotherapy was added and also through various other organizations useful... 10 years ago, particularly after tumor recurrence, is poor more weeks, will make decision... And eight out of 29 patients with extrahepatic recurrence were amenable to the P.s cancer is often in! Not located in liver single center experience and brief literature review cholangiocarcinoma for Adjuvant Guidance! To our hearts so no idea how I got this working as a.... Have implemented all of the tumor is not located in his main duct... ; however, second-line approaches are yet to be established Hu J, Hu,... Of patients with metastases had a much worse prognosis with a poor prognosis and a quality!