longest survivor of cholangiocarcinoma

Very tricky illness and at times hard to figure out. I dont expect to be a longterm survivor but I have already survived two edcuated guess prognoses. Surgery and chemotherapy play an increasingly . Liver-Directed Treatment Options Following Liver Tumor Recurrence: A Review of the Literature. PMC I was quite passionate about chocolate and spent several years playing in kitchens. Intrahepatic cholangiocarcinoma (ICC) is the second most prevalent primary liver cancer after hepatocellular carcinoma (HCC), and the incidence of ICC has been increasing worldwide over the last two decades (1, 2).Liver resection is a potential curative strategy that can prolong overall survival (OS) for patients with ICC; however, the prognosis of these patients is still dismal . Before Seven out of 29 patients with intrahepatic recurrence and eight out of 44 patients with extrahepatic recurrence were amenable to the repeat surgery. I decided to increase my faith, and hopefully share my faith with others, helping them strengthen or return to their faith. Kong L, Gao J, Hu J, Hu W, Guan X, Lu R, Lu JJ. He surgically removed 78% of my liver in an eleven and a half hour surgery. Have recently been dealing with issues of scar tissue in the ducts of the left lobe causing blockages leading to recurring sepsis. They want to share with other members that they found a great post that still applies to todays problems with CC. Conclusions: It is only accessible by boat or plane, and it does not have any traffic lights. My second recurrence occurred several months later, and I started my third chemotherapy regimen, which was unsuccessful, and the tumors grew. 2013 Oct;20(11):3596-602 The year 2010 was busy with work, volunteer work, board work, being a mom, being a wife and getting a child ready to send off to college. 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. The survival statistics of cholangiocarcinoma has been showing very pathetic figure over the decades. FOIA Bookshelf Take care. I wanted my husband to have a healthy and vibrant wife, but instead I felt like he had damaged goods. [A case report of combined hepatocellular-cholangiocarcinoma whose lymph node recurrence effectively treated with UFT]. 2017 Apr;161(4):897-908. doi: 10.1016/j.surg.2016.10.024. Cancer.Net GuideBile Duct Cancer (Cholangiocarcinoma). Were hoping the chemo will shrink the tumours be make them operable so keep your fingers crossed. Also, experts measure the survival statistics every 5 years. I had a researcher ask me what I thought was the most important thing I did for the people I mentored. The outlook (prognosis) for people with cholangiocarcinoma is usually poor. In most patients, the tumor cannot be completely removed with surgery and is incurable. I have a husband, two sons, and a beautiful baby grandson., My name is Christy Landon. Quality of Life and Symptom Management in Advanced Biliary Tract Cancers. In some places, though, cholangiocarcinoma is more common. Bookshelf After surgical recovery, six months of chemotherapy ensued. For extrahepatic bile duct cancer, the average age at diagnosis is 72. If the cancer has spread to the regional lymph nodes, the 5-year survival rate is 16%. Careers. She was diagnosed with cholangiocarcinoma almost 10 years ago. official website and that any information you provide is encrypted Because this cancer is often not discovered until it has already spread, it can be challenging to treat effectively. 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. Bookshelf If the cancer is diagnosed at an early stage, the 5-year survival rate is 25%. Cancers (Basel). 2021 Oct 21;11:776863. doi: 10.3389/fonc.2021.776863. 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 multidisciplinary management of gastrointestinal cancer. Several authors have shown that a 2 cm cut-off value might identify very early tumours with very low likelihood of dissemination and potential long-term survival with low recurrence rates 24,108 . Our hope came in a second opinion at the Cleveland Clinic from my hero, Dr. John Fung. 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. Thank you all for always reminding us that there are long-term survivors and there IS still hope. 2012;30:19341940. One day theyll figure out why. 2019 Jan;110(1):303-309. doi: 10.1111/cas.13872. If the cancer has spread to the regional lymph nodes, the 5-year survival rate is 8%. Post-operative Rehabilitation in Klatskin Tumor: A Rare Case Report. The five-year survival rate for bile duct cancer that hasn't spread outside of the bile ducts is 10% to 15%. The post-therapy QoL demonstrated a less improvement in Klatskin tumor patients than in patients with other types of tumors. My main problem now is fluid buildup in the abdomen, which is common with this disease. My journey included five recurrences with eight tumors, over 30 hours of surgery, 52 chemotherapy treatments and many radiation sessions. The local oncologist was kind and followed the standard of care, but I knew I needed a specialist. I sit on the Voice of the Patient Advocacy Council at the Cleveland Clinic because I feel it is so important for the voice of the patient to be heard. 2010 Nov;37(12):2729-31. Intrahepatic Cholangiocarcinoma Survival Rate If it is possible to remove the tumor entirely, there is a possibility of being cured. 1,2 It is also the second most common malignancy of the liver. By Cholangiocarcinoma Foundation | December 7, 2021. MY STORY I was diagnosed in December 2013 with stage II perihilar cholangiocarcinoma. If the cancer has spread to a distant part of the body, the 5-year survival rate is 2%. Registration is now open for our 2023 Annual Conference. The right side of his liver is doing all the work. In case 6, a 39-year-old male patient developed cholangiocarcinoma simultaneously combined with hepatocellular carcinoma. Clipboard, Search History, and several other advanced features are temporarily unavailable. 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. Slightly longer survival was recorded when chemotherapy was added and also after endoscopic placement of metallic stents. Following subtotal stomach-preserving pancreatoduodenectomy, multiple hepatic recurrences were identified 9 months later, and GC therapy was initiated. For example, if the 5-year relative survival rate for a specific stage of bile duct cancer (cholangiocarcinoma) is 30%, it means that people who have that cancer are, on average, about 30% as likely as people who don't have that cancer to live for at least 5 years after being diagnosed. HHS Vulnerability Disclosure, Help The site is secure. Cancer is the weed. Next, because this cancer is so rare, there was very little research and clinical trials. This case suggests that oral UFT might suppress the progression of ICC, contributing to this patient's 11-year survival period. 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. 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 am a patient and an advocate, but first, I am a mother to three amazing sons. 8600 Rockville Pike See Additional Information. 1 CCA represents about 2% of the total reported malignant tumors and 3% of all gastrointestinal cancers. The 1-year overall survival was 22.3 +/- 4.4% and the 2-year survival was 3.4 +/- 2.1%. The aim of this study was to evaluate the survival rate and quality of life in CCA patients. 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). The patient received systematic chemotherapy again and died of the disease 81 months after the initial surgery. The purpose of this research is to identify the elements of post-resection HC survival that are most . I believe in science and for me, that has provided a lot of hope. Cancer of the bile duct, or cholangiocarcinoma, is extremely rare. What Is the Treatment for Cholangiocarcinoma? Despite that vice, I maintained a fairly healthy lifestyle, My name is Jacqueline OBrien, and I am blessed with a wonderful husband, Sean, and our close-knit family here in New York City. N Engl J Med. Epub 2008 Feb 6. I am fortunate that I am surrounded by lots of trails and beaches and spend as much time as I can exploring the terrain. They are all attending college. 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%). 1,3 At the same time, long-term survival of patients with unresectable ICC is dismal, with less than 5% to 10% of the . MeSH Disclaimer, National Library of Medicine The overall median survival time was 31 months, and the 1- and 3-year survival rates were 89% and 40%, respectively. I think it is possible to live a long full life after cholangiocarcinoma just like people without cancer. Federal government websites often end in .gov or .mil. My excitement for sweets is balanced by my love of tennis and hiking. Only 11.3% of the patients were eligible to receive curative treatment. Each year, an estimated 8,000 people in the United States are diagnosed with bile duct cancer. Palliative treatment with self-expandable metallic stents in patients with advanced type III or IV hilar cholangiocarcinoma: a percutaneous versus endoscopic approach. Teo PM, Kwan WH, Chan AT, Lee WY, King WW, Mok CO. Int J Radiat Oncol Biol Phys. It's an 8 1/2 hr surgery with dire COMPLICATIONS. The 5-year survival rate for extrahepatic bile duct cancer is 10%. In some parts of the world, a parasite called a liver fluke can infect the bile duct and cause cancer. It is only accessible by boat or plane, and it does not have any traffic lights. Cholangiocarcinoma (bile duct cancer) is a deadly disease. 2010;362:12731281. Patients with the best prognosis may be seen every 2-3 months with periodic laboratory and. and transmitted securely. Wohlleber K, Heger P, Probst P, Engel C, Diener MK, Mihaljevic AL. 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. Results: A total of 217 patients with suspected HCCA were identified. According to American Joint Committee on Cancer (AJCC) 8th staging system, T1 intrahepatic cholangiocarcinoma (T1 ICC) is considered a tumor with no vascular invasion. 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. We immediately started researching cholangiocarcinoma, and the information we discovered was limited, and dismal. Prognostic factors of recurrent intrahepatic cholangiocarcinoma after hepatectomy: A retrospective study. I was usually the only patient in the infusion center. Background: This opened up the world of clinical trials and I was on the Fight 202 trial for 14 months. I am incredibly lucky to be married to my best friend and love of my life, Jason, who is the pillar of our family. My husband has chosen not to know his prognosis, after all it is just an estimation. 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. Hell J Nucl Med. PDF | Background Although hilar cholangiocarcinoma (HCCA) has a very poor prognosis, there are cases in which long-term survival is rarely obtained by. 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. (A) Postoperative CT scan at 10 months revealing multiple solid liver tumors (yellow arrows). and transmitted securely. 8600 Rockville Pike The 1-year survival was significantly improved for patients who underwent surgery plus adjuvant chemotherapy. 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. Im a 6+ year survivor of CC. He has been through 7 surgeries and 2 1/2 months of chemotherapy. Together, we have raised over $100K, and we have granted money to a genomic research project at the Cleveland Clinic the last two years. 8600 Rockville Pike Also, I am a Seattle native and still live in Seattle. 2008; 15:545-548. doi: 10.1007/s00534-007-1270-1. I really hope it continues. 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. Even when it's detected early, the five year survival rates for people with this cancer is less than 25%. You have a bad weed and the medicines don't usually work.". 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. He has been through 7 surgeries and 2 1/2 months of chemotherapy. This site needs JavaScript to work properly. Endoscopic palliative therapy allowed a faster community reintegration, but with variable evolution. Epub 2018 Dec 12. I found this thread by accident- I am only new to the site but how remarkable! I love my job and am grateful that I can be every student's champion. I am so thankful for the clinical trial of Adoptive Cell Therapy with Dr. Rosenberg which has extended my life hopefully for many years to come! I have an incredible support circle and I know that their love and care have given me so much strength. In 1995, the patient was admitted to our institution after a large tumor in his left liver was detected using computed tomography (CT). In addition, studies on the long-term prognosis of cHCC-CCA after curative resection are also rare. . Its heart wrenching watching him everyday and what must be going through his mind. . A Long-term Survivor of Intrahepatic Cholangiocarcinoma with Lymph Node Metastasis: a Case Report Masakazu Yamamoto, Ken Takasaki, Toshihide Imaizumi, Shunichi Ariizumi, Naoki Matsumura, Masayuki Nakano Japanese Journal of Clinical Oncology, Volume 32, Issue 6, June 2002, Pages 206-209, https://doi.org/10.1093/jjco/hyf044 Published: 01 June 2002 I had just separated from my husband and I was trying to find my groove as a single mom. Noji T, Tsuchikawa T, Mizota T, Okamura K, Nakamura T, Tamoto E, Shichinohe T, Hirano S. World J Surg Oncol. Patients who underwent repeat surgery had a lower proportion of lymph node metastases (n = 0 [0%] vs. n = 47 [50.5%], p < 0.001), multiple tumors in the primary tumor (n = 1 [6.7%] vs. n = 31 [33.3%], p = 0.037), or early recurrence ( 1 year; n = 4 [26.7%] vs. n = 62 [66.7%], p = 0.003). The sharing on this site is what helps to make it the best site there is for CC. She is 58. The tumor remained almost unchanged until 2001 with only UFT administration; however, its size gradually increased to 7.8 cm in diameter. Please enable it to take advantage of the complete set of features! Changes in DUPAN-2 levels following the clinical course and the quantified data of DUPAN-2 and CA19-9. The true incidence of bile duct cancer is unknown, however, because establishing an accurate diagnosis is difficult. Use the menu to choose a different section to read in this guide. 2022 Jan 31;12:832405. doi: 10.3389/fonc.2022.832405. Careers. I had that off-island, in America, and went back to Virginia Mason in Seattle where I had my resection. Long-standing inflammation, as with primary sclerosing cholangitis (PSC) or chronic parasitic infection, has been suggested to play a role by inducing hyperplasia, cellular proliferation, and, ultimately, malignant transformation. Background. 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. After 19 months, CT revealed tumor regrowth and another new metastatic lesion was identified in the left kidney. -, Cillo U, Fondevila C, Donadon M, Gringeri E, Mocchegiani F, Schlitt HJ, Iizermans JNM, Vivarelli M, Zieniewicz K, Olde Damink SWM, Groot Koerkamp B. Bethesda, MD 20894, Web Policies * To protect your identity do not use your full name. A Nomogram Model to Predict Early Recurrence of Patients With Intrahepatic Cholangiocarcinoma for Adjuvant Chemotherapy Guidance: A Multi-Institutional Analysis. Semin Liver Dis. The https:// ensures that you are connecting to the 2004 May;24(2):177-87. doi: 10.1055/s-2004-828894. I am 53 and living each day at a time enjoying life. Please, if anyone has some words of wisdom, please share. The https:// ensures that you are connecting to the 2021 Dec 15;13(12):1939-1955. doi: 10.4251/wjgo.v13.i12.1939. Even just reality n not fictional words. The researchers calculated that the overall median survival of patients with primary ITP was reduced by 5.1 years while that of patients with secondary disease was reduced by 11.1 years compared to the general population. I spend my days at the local elementary school where I am a Special Education teacher. If the cancer is diagnosed in an early stage, the 5-year survival rate is 17%. Heidi has always been a cancer advocate, especially with her family history of Lynch syndrome. The current study showed that CHC was associated with better longterm survival outcomes compared with ICC. I think that whatever brings joy is the right way and that we all need to embrace what brings love to our hearts. J Hepatobiliary Pancreat Surg. See theRisk Factorsand Prevention section for more information. 2022 Jun 7;22(1):620. doi: 10.1186/s12885-022-09665-3. Morise Z, Sugioka A, Hoshimoto S, Kato T, Tanahashi Y, Ikeda M, et al. 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. Intrahepatic cholangiocarcinoma may be associated with chronic ulcerative colitis and chronic cholecystitis. Cholangiocarcinoma (CCA) is a highly lethal adenocarcinoma of the hepatobiliary system, which can be classified as intrahepatic, perihilar and distal. My second opinion at the Cleveland Clinic with Dr. John Fung was a meeting of hope and compassion. The median survival in patients with ciated human intrahepatic cholangiocarcinoma. government site. The author seeks to answer the question of Why do they carry on in the face of utter and certain defeat?. I don't know about tomorrow, but I am going to try and live for today. HHS Vulnerability Disclosure, Help Careers. Before government site. I live in the Pacific Northwest on a remote island in the San Juan archipelago. Will My HER2-Positive Breast Cancer Spread? Perhaps theres something in the water. Finally, I wanted to become a mentor for other people battling the same cancer. Thus, prognostic factors and long-term survival after resection of IHC remain uncertain. Unable to load your collection due to an error, Unable to load your delegates due to an error. She was the longest survivor of correctable biliary atresia in our series in the Tohoku University Hospital. 1998 Mar 1;40(4):897-913. doi: 10.1016/s0360-3016(97)00854-7. Epub 2019 Feb 12. I had molecular profiling and found that I had the FGFR mutation. Registration is now open for our 2023 Annual Conference, It started as an itch. I am 69 soon to be 70. doi: 10.1200/JCO.2011.40.5381. PMC 2007;21(6):1015-29. doi: 10.1016/j.bpg.2007.09.005. 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. My husband has started his chemotherapy as he cannot have a surgery- no side effects to speak off and all well so far. Outlook is generally better if the tumor is not located in liver. Cholangiocarcinoma is a rare bile duct cancer in the liver. PSC is an autoimmune disease in which the body's immune system attacks the bile ducts and causes scarring. Is there anyone out there that can give us some kind of hope ?? Although hilar cholangiocarcinoma (HCCA) has a very poor prognosis, there are cases in which long-term survival is rarely obtained by multidisciplinary treatment. When they find a post, no matter how long ago, that answers their questions it is wonderful that they found such a helpful post. Disclaimer, National Library of Medicine Thankyou for yourpost, it is encouraging and helpful for me as at times I do get very anxious. MeSH [ 13] reviewed the data for 1490 cases of distal cholangiocarcinoma after pancreaticoduodenectomy in the USA. I attended the American Society of Clinical Oncology (ASCO) Annual Meeting this year as a research advocate. Hi, I was diagnosed in Aug 2019 and at first given months then within a week was told I had weeks. -, 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. -, Valle J, Wasan H, Palmer DH, Cunningham D, Anthoney A, Maraveyas A, Madhusudan S, Iveson T, Hughes S, Pereira SP, et al. 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. Would you like email updates of new search results? My diagnosis in 2010 made me think, How I could turn something so devastating into something hopeful and positive? 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. Ann Surg. (B) CT scan revealing the complete disappearance of the hepatic tumors after GC therapy. Hes never been a drinker, likes running and he looked like a young fit guy before he started his chemo. 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. Heidi has been a Cholangiocarcinoma Foundation ambassador at health fairs,, Working out was something of a side-hustle for me the last three years. 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. This is great. Learn more aboutunderstanding statistics. 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. Topic Guide. In conclusion, CIRT is a potential treatment option to control solitary recurrence of biliary tract cancer. 2018;163:732738. I turned to Google and the statistics were very grim with cholangiocarcinoma and I was not feeling lucky, despite what the surgeon thought. sharing sensitive information, make sure youre on a federal -. The remaining two survivors with a native liver, including the present case, developed cholangiocarcinoma during the long-term follow-up after corrective surgery for biliary atresia (Table (Table2, 2, cases 6 and 7). An official website of the United States government. 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].