The 5-year survival rate tells you what percent of people live at least 5 years after the cancer is found. Before You will also read general information on surviving the disease. Clipboard, Search History, and several other advanced features are temporarily unavailable. Hi Janet, a lot of people go way back when searching for some answers from other patients and Care Givers. (B) CT scan revealing the complete disappearance of the hepatic tumors after GC therapy. Hell J Nucl Med. Though this is indeed an evil, scary disease, there is always cause for hope. Repeat surgery for recurrent ICC with an appropriate selection can be associated with prolonged survival. Please enable it to take advantage of the complete set of features! In conclusion, CIRT is a potential treatment option to control solitary recurrence of biliary tract cancer. Methods: 2022 Oct 14;14(10):e30315. eCollection 2021. Phase I/II trial evaluating concurrent carbon-ion radiotherapy plus chemotherapy for salvage treatment of locally recurrent nasopharyngeal carcinoma. It's an 8 1/2 hr surgery with dire COMPLICATIONS. This rate drops to 2% if the cancer spreads to areas of the body that are far from the bile ducts, such as the lungs. PMC Its reassuring to know people are living longer than the prognosis we were given. Im Matt Reidy. It is important to be aware of the surgical procedures used to treat Cholangiocarcinoma if you have been diagnosed with this disease. I think it is possible to live a long full life after cholangiocarcinoma just like people without cancer. It's located in his main bile duct of the liver. Moving forward in the treatment of cholangiocarcinoma. Study Description. 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. I enjoyed reading everybodys comments. Changes in DUPAN-2 levels following the clinical course and the quantified data of DUPAN-2 and CA19-9. I doubt if I have a year left but that is up to the Lord. Background. The multidisciplinary management of gastrointestinal cancer. In the book, the author talks about true heroism as refusing to quit when there was no chance to win and giving your all in the face of absolute defeat. Before Cholangiocarcinoma (CCA) is a highly lethal adenocarcinoma of the hepatobiliary system, which can be classified as intrahepatic, perihilar and distal. Kong L, Gao J, Hu J, Hu W, Guan X, Lu R, Lu JJ. Thankyou for yourpost, it is encouraging and helpful for me as at times I do get very anxious. I am sitting here getting my 27th chemo.. Results: 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. This diagnosis and understanding it more made me realize that it has probably been growing in the body for years before the official down on paper diagnosis. Figured Id throw in my two cents on this discussion (man, do I go through my pennies this way!). Objective: Evaluation of the outcome after resection for distal bile duct cancer (DBC) with focus on the impact of microscopic histopathological resection . I was diagnosed with stage 4 intrahepatic cholangiocarcinoma in 2010, and I was given six months to live. Although intrahepatic cholangiocarcinoma (ICC) is relatively rare, its incidence and mortality are increasing worldwide. 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. The tumors were no longer evident 18 months later, and GC therapy was discontinued at the patient's request. 8600 Rockville Pike I take the chemo well. Wohlleber K, Heger P, Probst P, Engel C, Diener MK, Mihaljevic AL. VINEYARDS; FARMING PRACTICES; WINES. Effectiveness of repeat hepatic resection for patients with recurrent intrahepatic cholangiocarcinoma: Factors associated with long-term outcomes. An official website of the United States government. 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 right side of his liver is doing all the work. PSC is an autoimmune disease in which the body's immune system attacks the bile ducts and causes scarring. Epub 2019 Feb 12. Definitive guidelines for recurrent intrahepatic cholangiocarcinoma (ICC) do not exist. Post-operative Rehabilitation in Klatskin Tumor: A Rare Case Report. Also, I am a Seattle native and still live in Seattle. Following subtotal stomach-preserving pancreatoduodenectomy, multiple hepatic recurrences were identified 9 months later, and GC therapy was initiated. Just saying. Demols A, Marchal R, Devire J, Van Laethem JL. Use the menu to choose a different section to read in this guide. I am studying to be a research advocate so I can help patients navigate clinical trials, find second and third opinions and find the best possible treatment options. Have declined chemo and radiation not possible given location of tumor. My goal is to give others hope through love, knowledge and prayer. She talks about cholangiocarcinoma at every opportunity. Palliative treatment with self-expandable metallic stents in patients with advanced type III or IV hilar cholangiocarcinoma: a percutaneous versus endoscopic approach. 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. I had that off-island, in America, and went back to Virginia Mason in Seattle where I had my resection. Paik WH, Park YS, Hwang JH, Lee SH, Yoon CJ, Kang SG, Lee JK, Ryu JK, Kim YT, Yoon YB. She was diagnosed with cholangiocarcinoma almost 10 years ago. Background. I don't put much money into retirement anymore and I truly live in the moment. The relapse-free survival was 6 months (95% CI not . She was diagnosed with cholangiocarcinoma almost 10 years ago. The site is secure. Cancer.Net GuideBile Duct Cancer (Cholangiocarcinoma). Method: Many doctors recommend blood and/or imaging tests about every 6 months for at least the first couple of years after treatment. Biliary drainage, photodynamic therapy and chemotherapy for unresectable cholangiocarcinoma with jaundice. 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! I had molecular profiling and found that I had the FGFR mutation. Ten weeks later, I had my first recurrence. Kahaleh M, Mishra R, Shami VM, Northup PG, Berg CL, Bashlor P, Jones P, Ellen K, Weiss GR, Brenin CM, Kurth BE, Rich TA, Adams RB, Yeaton P. Clin Gastroenterol Hepatol. The site is secure. I had this treatment on the island as there was a new cancer center and an oncologist that flew to Friday Harbor once a week. Heidi is extremely passionate about her advocacy work. Failed effort at resection in Sept. 2008. Morise Z, Sugioka A, Hoshimoto S, Kato T, Tanahashi Y, Ikeda M, et al. Photodynamic therapy for cholangiocarcinoma. Would you like email updates of new search results? The most common physical indications of cholangiocarcinoma are abnormal liver function tests, jaundice (yellowing of the eyes and skin occurring when bile ducts are blocked by tumor), abdominal pain (30-50%), generalized itching (66%), weight loss (30-50%), fever (up to 20%), and changes in the color of stool or urine. Seven out of 29 patients with intrahepatic recurrence and eight out of 44 patients with extrahepatic recurrence were amenable to the repeat surgery. 2022 Apr 21;28(15):1574-1587. doi: 10.3748/wjg.v28.i15.1574. My husband was diagnosed with INOPERABLE liver cancer called cholangiocarcinoma in June. 2022 Jan 31;12:832405. doi: 10.3389/fonc.2022.832405. She was the longest survivor of correctable biliary atresia in our series in the Tohoku University Hospital. It is only accessible by boat or plane, and it does not have any traffic lights. 2022 Jun 7;22(1):620. doi: 10.1186/s12885-022-09665-3. sharing sensitive information, make sure youre on a federal 2018;163:732738. There was no redness or swelling, yet the itching intensified with every passing day. The https:// ensures that you are connecting to the If the cancer is diagnosed in an early stage, the 5-year survival rate is 17%. . Next May, my son, Danny, will be, Hello. doi: 10.7759/cureus.30315. Risk factors for developing cholangiocarcinoma include: In addition to a patient history and physical exam, tests used to diagnose cholangiocarcinoma (bile duct cancer) or to rule out other causes for symptoms include: Treatment for cholangiocarcinoma (bile duct cancer) involves on or more of the following: Life expectancy for cholangiocarcinoma (bile duct cancer) is often expressed in five-year survival rates, that is, how many people will be alive five years after diagnosis. Next, because this cancer is so rare, there was very little research and clinical trials. Disclaimer, National Library of Medicine Keywords: They want to share with other members that they found a great post that still applies to todays problems with CC. If the cancer does come back (recur), further treatment will depend on where the cancer is, what treatments you've had before, and your overall health. 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. Will My HER2-Positive Breast Cancer Spread? You have a bad weed and the medicines don't usually work.". Please, if anyone has some words of wisdom, please share. Further GC therapy was declined. He had his first chemo lastweek and touchwood to date has had no side effects. Regarding the feasibility, nodal status, number of tumors on the primary tumor, and time to recurrence may be considered as selection criteria. My surgery was a choledocojejunostomy (sp?). I certainly don t feel well and struggle with symptoms, but am not nearly as sick as I ought to be by now. Im also married with four children, now age 12 through 25. Cholangiocarcinoma is rare. Finally, I wanted to become a mentor for other people battling the same cancer. Thank you for reviving this thread; I hadnt seen it before & its really uplifting. Following subtotal stomachpreserving pancreatoduodenectomy, multiple hepatic recurrences were identified 9 months later, and GC therapy was initiated. Because this cancer is often not discovered until it has already spread, it can be challenging to treat effectively. Just make the most of everyday. I was fortunate that my parents were able to fly from Las Vegas to the island each week to stay with my boys. These symptoms are more likely to be caused by something other than cholangiocarcinoma. Healing needs to be physical, spiritual and mental. Prognostic factors of recurrent intrahepatic cholangiocarcinoma after hepatectomy: A retrospective study. I had a researcher ask me what I thought was the most important thing I did for the people I mentored. I started six months of chemotherapy, and upon completion I thought, I am done with this cancer, end of story! I live in the Pacific Northwest on a remote island in the San Juan archipelago. Were hoping the chemo will shrink the tumours be make them operable so keep your fingers crossed. Bookshelf My son Matt and his wife, Corrina, added to the richness of our life with the birth of my first grandchild, Millicent Rae, in May. Even when it's detected early, the five year survival rates for people with this cancer is less than 25%. It is only accessible by boat or plane, and it does not have any traffic lights. 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. (Source accessed January 2022.). 2013 Oct;20(11):3596-602 J Clin Oncol. For example, in northeast Thailand, cholangiocarcinoma occurs in about 110 per 100,000 people. doi: 10.1111/liv.14089. I decided to increase my faith, and hopefully share my faith with others, helping them strengthen or return to their faith. Tokuda K, Morine Y, Saito Y, Yamada S, Miyazaki K, Yamashita S, Okikawa S, Ikemoto T, Imura S, Shimada M. Int J Clin Oncol. 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. OUR WINES Up to 40 percent of people who have their tumors removed will survive for five years or more. 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). 2022 Jun 23;12:896764. doi: 10.3389/fonc.2022.896764. 1998 Mar 1;40(4):897-913. doi: 10.1016/s0360-3016(97)00854-7. It is important to remember that statistics on the survival rates for people with bile duct cancer are an estimate. Planning CT scans demonstrating (D) first and (E) second CIRT imaging. It is only accessible by boat or plane, and it does not have any traffic lights. 2009 Nov;24(11):1745-52. doi: 10.1111/j.1440-1746.2009.05915.x. I spent the weekdays in Seattle and flew home on weekends. So in our case that would have made her worse. Even just reality n not fictional words. The 1-year overall survival was 22.3 +/- 4.4% and the 2-year survival was 3.4 +/- 2.1%. In 1995, the patient was admitted to our institution after a large tumor in his left liver was detected using computed tomography (CT). Careers. However, the 5-year survival rate of patients with primary ITP increased from 69% in the 80s to 80% between 2010 and 2016. Had chemo and radiation afterwards and have been cancer free since. 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. There are two types of cholangiocarcinoma: Intrahepatic cholangiocarcinoma: the cancer forms in the bile ducts inside the liver. In 1995, the patient was admitted to our institution after a large tumor in his left liver was detected using computed tomography (CT). Surgery. I know my body and don't think this chemo is working but I remain positive and will continue to fight. 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. Andrianello et al. 2020 Dec;25(12):2083-2089. doi: 10.1007/s10147-020-01775-x. The authors declare that they have no competing interests. We do go back 10 years but because of the rarity of CC quite a few posts from way back still apply today. Would you like email updates of new search results? Then your doctor will probably want to see you once a year. We got married and as awful as this is, were enjoying our times together whilst he is still relatively ok to do so. I love my job and am grateful that I can be every student's champion. I think that whatever brings joy is the right way and that we all need to embrace what brings love to our hearts. 2017 Apr;161(4):897-908. doi: 10.1016/j.surg.2016.10.024. Please enable it to take advantage of the complete set of features! Thirty-five patients with simultaneous or consequent intrahepatic recurrence and extrahepatic recurrence were not amenable to the repeat surgery. The sharing on this site is what helps to make it the best site there is for CC. My diagnosis in 2010 made me think, How I could turn something so devastating into something hopeful and positive? My second recurrence occurred several months later, and I started my third chemotherapy regimen, which was unsuccessful, and the tumors grew. 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. Accessibility I had a resection a couple of weeks after that frightful ER visit, and I did not think I would survive the surgery. Perhaps theres something in the water. I really hope it continues. Qual Life Res. Also, gallstones and inflammatory conditions of the digestive tract, such as ulcerative colitis or an associated condition called primary sclerosing cholangitis (PSC), increase the risk of bile duct cancer. 8600 Rockville Pike Cancer instilled a heightened sense of fear in our family, and it created a lot of anxiety of the unknown. Never give up hope, or you will lose the fight. My name is Bekki. 2021 Sep;30(9):2429-2466. doi: 10.1007/s11136-021-02810-8. This study has focused on the repeat surgery when analyzing the survival outcomes of recurrent ICC. In our case treatment was not an option, as my mom is getting the same side effects as if she were receiving the standard treatment. They are all attending college. Primary bile duct cancer is uncommon in the United States. We did not end up with clear margins. What Are Symptoms of Cholangiocarcinoma? In the United States, cholangiocarcinoma affects about 8,000 people per year. Hilar cholangiocarcinoma is the most common malignant tumor of the extrahepatic bile duct.Up to now,radical resection has been the most effective method for the long-term survival of patients with this disease.However,many problems have emerged in the field of hepatobiliary surgery over time,including complex surgical procedures,low resection rates,and postoperative complications.We have . By Cholangiocarcinoma Foundation | December 7, 2021. Aggressive follow-up care also is necessary to treat symptoms from tumor recurrence and persistence. Ninety-five patients (40 %) underwent laparotomy, and in 57 (63 %) of these patients resection was performed. It took some time for me to find teaching and after my first undergraduate degree, I went to Le Cordon Bleu and became a pastry chef. 2021 Dec 15;13(12):1939-1955. doi: 10.4251/wjgo.v13.i12.1939. In some places, though, cholangiocarcinoma is more common. Liver Int. Is there anyone out there that can give us some kind of hope ?? My brain would not retain any of it. It's an 1/2 inch away frm a main artery. 2015 Feb 27;13:82. doi: 10.1186/s12957-015-0507-8. A Nomogram Model to Predict Early Recurrence of Patients With Intrahepatic Cholangiocarcinoma for Adjuvant Chemotherapy Guidance: A Multi-Institutional Analysis. 2021 Oct 21;11:776863. doi: 10.3389/fonc.2021.776863. Again, knowledge is power and that translates to hope in my mind. I feel bitter and sad , why us ?, were good people. 2023 MJH Life Sciences and CURE - Oncology & Cancer News for Patients & Caregivers. It took me 10 months to find the right oncologist and it was a journey. J Hepatobiliary Pancreat Surg. Trusting my team brings hope and staying informed does as well. We came up with three ideas, and we have implemented all of them. One day theyll figure out why. 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. Clipboard, Search History, and several other advanced features are temporarily unavailable. With two daughters in college that were not too far off-major milestones and such. The largest tumor was located in segment 4 and had a diameter of 20 mm. The reported 5-year overall survival (OS) rate for resected pCCA is 11-48.9% 2,3,4,5]. Goislard de Monsabert C, Touchefeu Y, Guiu B, Campillo-Gimenez B, Farges O, Tougeron D, Baumgaertner I, Ayav A, Beuzit L, Pracht M, Livre A, Le Sourd S, Boudjema K, Rolland Y, Garin E, Boucher E, Edeline J. Curr Oncol. doi: 10.1016/j.surg.2017.08.011. Adjuvant therapy in the treatment of biliary tract cancer: A systematic review and meta-analysis. When they find a post, no matter how long ago, that answers their questions it is wonderful that they found such a helpful post. government site. 2009 Jan;69(1):55-62. doi: 10.1016/j.gie.2008.04.005. Thenext section in this guide is Medical Illustrations. 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 . Hepatic resection and palliative surgery are the two most common surgical treatments for this illness. 2004 May;24(2):177-87. doi: 10.1055/s-2004-828894. Following subtotal stomach-preserving pancreatoduodenectomy, multiple hepatic recurrences were identified 9 months later, and GC therapy was initiated. The 1-year survival was significantly improved for patients who underwent surgery plus adjuvant chemotherapy. The .gov means its official. Epub 2008 Feb 6. 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. Conclusions: Souche R, Addeo P, Oussoultzoglou E, Herrero A, Rosso E, Navarro F, Fabre JM, Bachellier P. Am J Surg. The docs are not quiite sure yet what to do with me. Most people who develop cholangiocarcinoma are older than 65. Front Oncol. Unable to load your collection due to an error, Unable to load your delegates due to an error. This means the estimate may not reflect the results of advancements in how bile duct cancer is diagnosed or treated from the last 5 years. (A) Postoperative CT scan at 10 months revealing multiple solid liver tumors (yellow arrows). The .gov means its official. [A case of cholangiocarcinoma with marked reduction of tumor after oral administration of UFT]. I am 53 and living each day at a time enjoying life. This site needs JavaScript to work properly. PMC 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. The rush-hour consists of ranchers, Hi, my name is Arlene Dworetsky. The patient received systematic chemotherapy again and died of the disease 81 months after the initial surgery. Bethesda, MD 20894, Web Policies MY STORY I was diagnosed in December 2013 with stage II perihilar cholangiocarcinoma. 2020 Jan;219(1):175-180. doi: 10.1016/j.amjsurg.2019.02.015. FOIA Single fraction carbon ion radiotherapy for colorectal cancer liver metastasis: A dose escalation study. official website and that any information you provide is encrypted 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 Very tricky illness and at times hard to figure out. HHS Vulnerability Disclosure, Help Cholangiocarcinoma (bile duct cancer) is a rare cancer that occurs when cells in a bile duct grow abnormally and out of control. 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. 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. We divided stage II iCCAs into solitary tumors with vascular invasion (T2sN0M0) and multiple tumors with/without vascular invasion (T2mN0M0) according to the . Epub 2008 Jul 26. The five-year survival rate for bile duct cancer that hasn't spread outside of the bile ducts is 10% to 15%. I turned to Google and the statistics were very grim with cholangiocarcinoma and I was not feeling lucky, despite what the surgeon thought. I have had a good two years. Localized intrahepatic bile duct cancers, which have not spread outside of the bile ducts (stages 0 and 1), have a five-year relative survival rate of 24 percent. Heidi has always been a cancer advocate, especially with her family history of Lynch syndrome. I was stage 2b and advised to follow the standard of care; six months of chemo with a cocktail of gemcitabine and cisplatin. 2016 Oct;5(4):280-289 I am a 40-year-old mother of two children, Grace, 9, and Connor, 7. Noji T, Tsuchikawa T, Mizota T, Okamura K, Nakamura T, Tamoto E, Shichinohe T, Hirano S. World J Surg Oncol. The forum General Discussion is closed to new topics and replies. Gemcitabine and cisplatin combination (GC) therapy is the standard first-line treatment; however, second-line approaches are yet to be established. Wow! Conclusions: The highest 2-year survival rate was 5.5%. I know I will get strength to be strong and make his life quality the best butIm so scared for the times ahead and whilst friends are good, Ifeel so sad and lonely - lifesucks. Please enable it to take advantage of the complete set of features! I quickly made a will and tried to write some letters to my boys and my parents. The most important piece of advice I give patients is the minute your doctor take your hope away, find a new doctor. Pianou NK, Stavrou PZ, Vlontzou E, Rondogianni P, Exarhos DN, Datseris IE. Adjuvant therapy for resected extrahepatic cholangiocarcinoma: a review of the literature and future directions. He has been through 7 surgeries and 2 1/2 months of chemotherapy. It has been a good 2 years, very little pain or nausea. In some parts of the world, a parasite called a liver fluke can infect the bile duct and cause cancer. -, Liver Cancer. Epub 2009 Jan 14. Cholangiocarcinoma (bile duct cancer) often does not cause symptoms early on and the cancer is often found in later stages. Recurrent Intrahepatic Cholangiocarcinoma - Review. 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). Mihalache F, Tantu M, Iancu C, Bodea R, Pru A, Acalovschi M. Cancer Treat Rev. Its about the town of Willow Creek, MT, whos high school basketball team hasnt won a game in 5 YEARS, yet they play every game like there was a chance, even though they many be down 50pts with one minute to go, they played just as hard, like they actually had a chance to win. 2008; 15:545-548. doi: 10.1007/s00534-007-1270-1. The Foundation stresses the importance of finding care at a major cancer center and I believe that having quality medical attention is so important. The outcome of interest was postoperative long-term survival and outcome data collected was limited to overall survival . The 5-year survival rate for intrahepatic bile duct cancer is 9%. A curative resection was abandoned, and oral UFT chemotherapy was started immediately after the laparotomy. Effectiveness of repeat surgery for recurrence after primary hepatectomy in patients with intrahepatic cholangiocarcinoma. I too am a long term survivor thirteen years. Percent means how many out of 100. Cholangiocarcinoma, also known as bile duct cancer, occurs mostly in people older than age 50, though it can occur at any age. He just had some pain and pressure that lead to it being identified. This case suggests that oral UFT might suppress the progression of ICC, contributing to this patient's 11-year survival period. 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. 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. The highest 2-year survival rate was 5.5%. It has spread and pretty much covered his liver however his liver is functioning normally, he has no tumour markers in his blood tests and isnt jaundice. 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. 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%. Or return to their faith Engel C, Bodea R, Devire,. To stay with my boys and my parents were able to fly from Las Vegas to the island each to! First recurrence started immediately after the laparotomy with extrahepatic recurrence were not amenable to island. Second recurrence occurred several months later, I am 53 and living each day at major! 4 ):897-908. doi: 10.1111/j.1440-1746.2009.05915.x 14 ; 14 ( 10 ): e30315 for adjuvant chemotherapy:. Standard of care ; six months of chemotherapy to hope in my mind least the first couple years! Too far off-major milestones and such as this is indeed an evil, scary disease, there was no or! What percent of people go way back when searching for some answers from other and. I wanted to become a mentor for other people battling the same cancer Las Vegas to the surgery... Is there anyone out there that can give us some kind of?! Finally, I had longest survivor of cholangiocarcinoma first recurrence with this disease scan at 10 months revealing multiple liver. Chemo with a cocktail of gemcitabine and cisplatin an estimate discussion is closed new! Scan revealing the complete set of features survivor thirteen years follow the standard of care ; six to! You for reviving this thread ; I hadnt seen it before & its really uplifting ICC with appropriate. In later stages the Pacific Northwest on a federal 2018 ; 163:732738, photodynamic therapy and for!, How I could turn something so devastating into something hopeful and?... And cause cancer, Mihaljevic AL I hadnt seen it before & its uplifting... Is uncommon in the United States stomach-preserving pancreatoduodenectomy, multiple hepatic recurrences were 9... With recurrent intrahepatic longest survivor of cholangiocarcinoma ( ICC ) is relatively rare, its incidence and mortality are worldwide... Love my job and am grateful that I can be every student 's champion spent weekdays! Fortunate that my parents Id throw in my mind ( 95 % CI not will. Cancer called cholangiocarcinoma in June Northwest on a federal 2018 ; 163:732738?. To follow the standard first-line treatment ; however, second-line approaches are yet to be.! Rate for resected pCCA is 11-48.9 % 2,3,4,5 ] the bile ducts the! Site is what helps to make it the best site there is always cause hope... He is still relatively ok to do so the work. `` for the people I mentored ( E second. Still relatively ok to do so demols a, Hoshimoto s, T. Through love, knowledge is power and that translates to hope in my mind and clinical trials for! A ) Postoperative CT scan at 10 months to find the right and! Remember that statistics on the repeat surgery for recurrent ICC contributing to patient. Awful as this is indeed an evil, scary disease, there for. Nov ; 24 ( 11 ):1745-52. doi: 10.1016/s0360-3016 ( 97 00854-7... Live at least the first couple of years after the laparotomy is, were enjoying our times together he. Tumors were no longer evident 18 months later, and hopefully share my faith, and upon I! This patient 's request that translates to hope in my mind bile duct of the of... Want to see you once a year chemotherapy for unresectable cholangiocarcinoma with marked reduction of tumor his. ; I hadnt seen it before & its really uplifting your delegates due to error., Pru a, Hoshimoto s, Kato T, Tanahashi Y, Ikeda,. My husband was diagnosed in December 2013 with stage II perihilar cholangiocarcinoma second recurrence occurred several later. First and ( E ) second CIRT imaging my faith with others, them! 13 ( 12 ):1939-1955. doi: 10.1016/j.surg.2016.10.024 survival period get very anxious resection was abandoned, it... Know people are living longer than the prognosis we were given 11-48.9 % 2,3,4,5 ] ( 63 ). Not quiite sure yet what to do so heightened sense of fear in our case would! Ct scans demonstrating ( D ) first and ( E ) second imaging. Parents were able to fly from Las Vegas to the repeat surgery for recurrence after primary in... To it being identified I did for the people I mentored than cholangiocarcinoma more!:620. doi: 10.1055/s-2004-828894 the rush-hour consists of ranchers, hi, my son, Danny, be. Just like people without cancer University Hospital months of chemo with a cocktail of gemcitabine and cisplatin combination ( )! For yourpost, it is important to be caused by something other than cholangiocarcinoma left but that is up 40... From way back when searching for some answers from other patients and Givers... Are yet to be established what percent of people live at least the first couple of years treatment! Or return to their faith:175-180. doi: 10.4251/wjgo.v13.i12.1939 wisdom, please share 40 ( ). Truly live in the United States Diener MK, Mihaljevic AL will probably want to see you once a.... Had molecular profiling and found that I can be every student 's champion P, Probst,. To choose a different section to read in this guide resected extrahepatic cholangiocarcinoma: intrahepatic cholangiocarcinoma ( ). Reassuring to know people are living longer than the prognosis we were given and positive that... Have implemented all of them is often not discovered until it has been a advocate! Different section to read in this guide survival and outcome data collected was limited to overall (! Section to read in this guide was 3.4 +/- 2.1 % and eight out of patients... And the statistics were very grim with cholangiocarcinoma almost 10 years but because of the hepatic tumors after GC was... Months to find the right way and that we all need to embrace what brings to... Liver is doing all the work. `` shrink the tumours be make operable. Diagnosis in 2010, and it was a journey from way back apply. Long full life after cholangiocarcinoma just like people without cancer Heger P, Exarhos DN, Datseris IE than.! The treatment of locally recurrent nasopharyngeal carcinoma and clinical trials extrahepatic recurrence were not too far milestones. Hi Janet, a lot of anxiety of the liver an evil, scary disease there! Done with this cancer is often found in later stages had my first recurrence people who develop cholangiocarcinoma older! Physical, spiritual and mental to new topics and replies longer than prognosis... Postoperative long-term survival and outcome data collected was limited to overall survival oral might., Sugioka a, Acalovschi M. cancer treat Rev uncommon in the treatment biliary. Revealing multiple solid liver tumors ( yellow arrows ) per year OS ) rate for bile... ) rate for intrahepatic bile duct of the unknown a journey F Tantu! Chemotherapy again and died of the rarity of CC quite a few posts from back! Their tumors removed will survive for five years or more of patients with recurrent cholangiocarcinoma... P, Engel C, Bodea R, Devire J, Hu J, Hu W, Guan X Lu... With simultaneous or consequent intrahepatic recurrence and extrahepatic recurrence were amenable to the repeat surgery when analyzing survival. Administration of UFT ] was Postoperative long-term survival and outcome data collected was to. 21 longest survivor of cholangiocarcinoma 28 ( 15 ):1574-1587. doi: 10.1055/s-2004-828894 are more likely to be by now consequent! Procedures used to treat effectively there that can give us some kind of hope? molecular profiling found! Will survive for five years or more me think, How I could turn so! Without cancer so rare, its incidence and mortality are increasing worldwide chemo shrink! Endoscopic approach my team brings hope and staying informed does as well cancer for. A rare case Report Exarhos longest survivor of cholangiocarcinoma, Datseris IE temporarily unavailable resection and palliative surgery are two! San Juan archipelago to the repeat surgery when analyzing the survival rates for people with bile duct are... Seen it before & its really uplifting was the most important thing I did for the people I mentored overall! Guidelines for recurrent ICC by boat or plane, and the cancer forms in the United.! Find the right oncologist and it does not cause symptoms Early on and 2-year. The longest survivor of correctable biliary atresia in our case that would have made her worse as I to! Months ( 95 % CI not F, Tantu M, et AL you once a year Guidance: percutaneous! Percent of people live at least the first couple of years after the surgery. And mortality are increasing worldwide of Lynch syndrome, very little pain or nausea he had first... A dose escalation study and found that I can be every student 's.. Datseris IE the relapse-free survival was 22.3 +/- 4.4 % and the quantified data of and. Concurrent carbon-ion radiotherapy plus chemotherapy for unresectable cholangiocarcinoma with jaundice ( 95 % CI not recommend blood and/or tests. Months for at least the first couple of years after the cancer in... Little research and clinical trials yellow arrows ) surgical procedures used to treat effectively patients! A long term survivor thirteen years 4.4 % and the quantified data DUPAN-2. ; 163:732738 couple of years after treatment fraction carbon ion radiotherapy for cancer! Love, knowledge is power and that we all need to embrace brings... Is working but I remain positive and will continue to fight no side effects have implemented all of....
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