Mentoring has become my passion. Biliary drainage, photodynamic therapy and chemotherapy for unresectable cholangiocarcinoma with jaundice. Take care and enjoy each others company. Before Chin J Cancer. I am sitting here getting my 27th chemo.. Finally, I wanted to become a mentor for other people battling the same cancer. 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. Kitano Y, Yamashita YI, Nakagawa S, Okabe H, Imai K, Chikamoto A, Baba H. Am J Surg. Management of refractory metastatic anal squamous cell carcinoma following disease progression on traditional chemoradiation therapy. We live on the Central Coast of California (between Los Angeles and San, 2023 Cholangiocarcinoma Foundation - All Rights Reserved - Disclaimer, Language, Translation & Accessibility Options, Staging Perihilar Extrahepatic Cholangiocarcinoma, Staging Distal Extrahepatic Cholangiocarcinoma, Understanding Your Clinical Trial Results, Long-Term Survivor Stories Robert Bickel, Long-Term Survivor Stories Jacqueline OBrien, Long-Term Survivor Stories Ellyn Goodrich, Long-Term Survivor Stories Arlene Dworetsky, Long-Term Survivor Stories Christy Landon, Long-Term Survivor Stories Bekki Slater. This thread is so encouraging. I itched everywhere my arms, my legs, my hands, my feet, my chest. Wohlleber K, Heger P, Probst P, Engel C, Diener MK, Mihaljevic AL. MY STORY I was diagnosed in December 2013 with stage II perihilar cholangiocarcinoma. Would you like email updates of new search results? 2008 Mar;6(3):290-7. doi: 10.1016/j.cgh.2007.12.004. My surgery was a choledocojejunostomy (sp?). government site. I had progression and went off of the trial in October 2019. I spend my days at the local elementary school where I am a Special Education teacher. 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 patients receiving metallic stents had better survival than those receiving plastic stents (40.4% vs 12.5% at 1 year, 9.1% vs 5.0% at 2 years, respectively). 2019 Jan-Apr;22(1):6-9. doi: 10.1967/s002449910952. 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. Post-operative Rehabilitation in Klatskin Tumor: A Rare Case Report. I was diagnosed three years ago. I didn't have time for cancer, but as we all know it doesn't take applications. -, Liver Cancer. Viewing 15 posts - 1 through 15 (of 25 total), This topic has 24 replies, 19 voices, and was last updated. Conclusions: In some places, though, cholangiocarcinoma is more common. 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. The new insight of treatment in Cholangiocarcinoma. Once again, thankyou for posting your comments, its helpful to hear from others . We divided stage II iCCAs into solitary tumors with vascular invasion (T2sN0M0) and multiple tumors with/without vascular invasion (T2mN0M0) according to the . Some will do it and it is critical for patients facing this to know even stage 3 patients can be long term survivors if you pour through the statistics, so there is cause to remain hopeful. The https:// ensures that you are connecting to the Long-term outcomes after surgical resection of bile duct cancer remain unsatisfactory, and survival, particularly after tumor recurrence, is poor. Learn more aboutunderstanding statistics. Because, in his own words, he is "lucky enough . The https:// ensures that you are connecting to the Before It is a book of hope, and not giving up, because miracles do happen. The most important piece of advice I give patients is the minute your doctor take your hope away, find a new doctor. She was diagnosed with cholangiocarcinoma almost 10 years ago. I think it is possible to live a long full life after cholangiocarcinoma just like people without cancer. Our family started Craine's Cholangiocarcinoma Crew, a 501c3 that raises funds for research on bile duct cancers. Eleven years have now passed since the laparotomy, and the patient continues to lead a normal daily life working as a banker. 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. 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. After reading several topics regarding this type of cancer, I have gotten very discouraged. My excitement for sweets is balanced by my love of tennis and hiking. It's an 1/2 inch away frm a main artery. I was quite passionate about chocolate and spent several years playing in kitchens. Epub 2019 Mar 7. How much time do we hve ?? Federal government websites often end in .gov or .mil. My own case: tumor first seen iin March 2008. doi: 10.1111/liv.14089. An official website of the United States government. 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. Bethesda, MD 20894, Web Policies My husband has started his chemotherapy as he cannot have a surgery- no side effects to speak off and all well so far. 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. 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. Where do these numbers come from? 2015 Feb 27;13:82. doi: 10.1186/s12957-015-0507-8. I dont expect to be a longterm survivor but I have already survived two edcuated guess prognoses. I was diagnosed with stage 4 intrahepatic cholangiocarcinoma in 2010, and I was given six months to live. -, Br J Cancer. The site is secure. I guess I should add, when diagnosed stage 4 nonoperarable had spread to the lungs and lympnodes. It's an 8 1/2 hr surgery with dire COMPLICATIONS. Thanks! Of these, 15 patients underwent repeat surgery and 93 did not. The author seeks to answer the question of Why do they carry on in the face of utter and certain defeat?. In most patients, the tumor cannot be completely removed with surgery and is incurable. The whole way cc is treated is evolving and I am hopeful the numbers will continue to improve. Biliary tract cancers: from pathogenesis to endoscopic treatment. | Find, read and cite all the research you . Patient with advanced intrahepatic cholangiocarcinoma with long-term survival successfully treated with a combination of surgery and chemotherapy. This time I thought, Okay God, I'm really done now, right? My partner received similar news yesterday, inoperable, because of where it is and drainage and chemotherapy being the only treatment plan, Hes 56 and 3 weeks ago was leading a normal life, just went jaundiced over a couple of days. Even when its detected early, the five year survival rates for people with this cancer is less than 25%. Unable to load your collection due to an error, Unable to load your delegates due to an error. J Cancer. Just saw my GI doc today and he says Im doing remarkably well. I hope your sister tolerates it well. Phase I/II trial evaluating concurrent carbon-ion radiotherapy plus chemotherapy for salvage treatment of locally recurrent nasopharyngeal carcinoma. Heidi is extremely passionate about her advocacy work. You have a bad weed and the medicines don't usually work.". Clipboard, Search History, and several other advanced features are temporarily unavailable. 1989 Mar;16(3 Pt 1):411-4. Disclaimer, National Library of Medicine It is only accessible by boat or plane, and it does not have any traffic lights. I was young and in good health aside from the 70% of the liver that he removed. This site needs JavaScript to work properly. I buy good wine and I say, yes, a lot. doi: 10.1016/j.surg.2017.08.011. 1 It is only accessible by boat or plane, and it does not have any traffic lights. 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. The word cholangiocarcinoma changed our lives forever, and I say our lives because cancer is not an individual diagnosis. Cancers (Basel). Use the menu to choose a different section to read in this guide. [A case report--intrahepatic arterial infusion with CDDP and S-1 administration can elicit long-term survival for the patient with recurrenced intrahepatic cholangiocarcinoma after resection]. Further GC therapy was declined. Percent means how many out of 100. 1998 Mar 1;40(4):897-913. doi: 10.1016/s0360-3016(97)00854-7. On average, it affects fewer than 6 in 100,000 people around the world. 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. Paik WH, Park YS, Hwang JH, Lee SH, Yoon CJ, Kang SG, Lee JK, Ryu JK, Kim YT, Yoon YB. 2016 Oct;5(4):280-289 The relapse-free survival was 6 months (95% CI not . Each year, an estimated 8,000 people in the United States are diagnosed with bile duct cancer. 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. Most people who develop cholangiocarcinoma are older than 65. I live in the Pacific Northwest on a remote island in the San Juan archipelago. My congratulations to all the long-term survivors! 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. Frequency Teo PM, Kwan WH, Chan AT, Lee WY, King WW, Mok CO. Int J Radiat Oncol Biol Phys. 10 Things People With Depression Wish You Knew, Abnormalities where the bile duct and pancreatic duct normally meet, Older age: most people diagnosed with cholangiocarcinoma are in their 60s or 70s. Were hoping the chemo will shrink the tumours be make them operable so keep your fingers crossed. Front Oncol. eCollection 2022. The site is secure. I went to the way back machine, and I found this old thread, and it hit a cord. Im a 6+ year survivor of CC. Moving forward in the treatment of cholangiocarcinoma. I will hit my eight year mark of stage IV Intrahepatic Cholangiocarcinoma on December 1st this year. 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. So in our case that would have made her worse. 2016 Sep;40(9):2229-36 N Engl J Med. I think it is possible to live a long full life after cholangiocarcinoma just like people without cancer. Background and aims: eCollection 2022. When they find a post, no matter how long ago, that answers their questions it is wonderful that they found such a helpful post. 2021 Sep;30(9):2429-2466. doi: 10.1007/s11136-021-02810-8. official website and that any information you provide is encrypted So there is hope! Outlook is generally better if the tumor is not located in liver. 2021 Oct 11;13(20):5074. doi: 10.3390/cancers13205074. [ 1] -, World J Surg. Looking back over the last six years, I reflect on the thought that cancer is not a blessing, but many blessings presented themselves during the rough ride, blessings in the way of all the beautiful friends I have made with the same cancer, and the blessing for the appreciation of life. What Is the Life Expectancy for Cholangiocarcinoma? 2008; 15:545-548. doi: 10.1007/s00534-007-1270-1. 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. The true incidence of bile duct cancer is unknown, however, because establishing an accurate diagnosis is difficult. 2010 Aug 10;103(4):469-74 I was in the ER with my son, I thought I had appendicitis, and the doctor came to me with tears in his eyes and said I had liver cancer. Federal government websites often end in .gov or .mil. Photodynamic therapy for cholangiocarcinoma. This study has focused on the repeat surgery when analyzing the survival outcomes of recurrent ICC. The highest 2-year survival rate was 5.5%. Federal government websites often end in .gov or .mil. MY STORY Prior to diagnosis, I was a family and consumer sciences teacher, Hello. government site. [ 13] reviewed the data for 1490 cases of distal cholangiocarcinoma after pancreaticoduodenectomy in the USA. Topic Guide. Thenext section in this guide is Medical Illustrations. Shimizu J, Hayashi S, Dono K, Yasumoto T, Zenitani M, Munakata K, Watanabe N, Takamoto K, Kagawa Y, Hata T, Kawanishi K, Ikeda K, Fujita J, Akagi K, Kitada M, Shimano T. Gan To Kagaku Ryoho.