Also, I am a Seattle native and still live in Seattle. Patient with advanced intrahepatic cholangiocarcinoma with long-term survival successfully treated with a combination of surgery and chemotherapy. P.s. 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). Melinda Bachini (second to left) with her husband and 6 children. Endoscopic palliative therapy allowed a faster community reintegration, but with variable evolution. Hi Janet, a lot of people go way back when searching for some answers from other patients and Care Givers. 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. 2005-2023 American Society of Clinical Oncology (ASCO). Would you like email updates of new search results? She talks about cholangiocarcinoma at every opportunity. The tumor stage was T2aN0M0, stage II, based on the TNM . It has been a good 2 years, very little pain or nausea. Cholangiocarcinomas (CCAs) are tumors with a poor prognosis and a lower quality of life (QoL). Disclaimer, National Library of Medicine We did not end up with clear margins. My favorite book right now is Blind Your Ponies, by Stanley Gordon West. Prognostic factors of recurrent intrahepatic cholangiocarcinoma after hepatectomy: A retrospective study. The docs are not quiite sure yet what to do with me. The chemo stopped working a few months ago and I have been given a new chemo treatment which includes chemo tablets. The present report describes the longterm survival of a 65yearold man with distal bile duct cancer of pathological stage IIA (T2N0M0; depth of invasion, 5.5 mm) following multimodal treatment. I always look at that section and it stays at four. Finally, I wanted to become a mentor for other people battling the same cancer. Sota Y, Einama T, Kobayashi K, Fujinuma I, Tsunenari T, Takihata Y, Iwasaki T, Miyata Y, Okamoto K, Kajiwara Y, Shinto E, Tsujimoto H, Yasuda S, Isozaki Y, Yamada S, Yamamoto J, Ueno H, Kishi Y. Mol Clin Oncol. My husband has started his chemotherapy as he cannot have a surgery- no side effects to speak off and all well so far. 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. An official website of the United States government. Epub 2018 Dec 12. Just wanted to dig up this old topic and put it out there again, remain positive, Pat, Jeans post would be great in survivor section. My congratulations to all the long-term survivors! Each year, an estimated 8,000 people in the United States are diagnosed with bile duct cancer. Best Pract Res Clin Gastroenterol. 2019;39 (Suppl 1):S143S155. This is great. I buy good wine and I say, yes, a lot. 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 . The true incidence of bile duct cancer is unknown, however, because establishing an accurate diagnosis is difficult. 2004 May;24(2):177-87. doi: 10.1055/s-2004-828894. We immediately started researching cholangiocarcinoma, and the information we discovered was limited, and dismal. The relapse-free survival was 6 months (95% CI not . 2013;258:129140. Disclaimer, National Library of Medicine 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%). It's located in his main bile duct of the liver. 2022 Jan 1;13(2):450-464. doi: 10.7150/jca.68264. I found Dr. Harris in September 2017. I used it as motivation to quit smoking and set the stage for the next chapter of my life. Kong L, Gao J, Hu J, Hu W, Guan X, Lu R, Lu JJ. The patient received systematic chemotherapy again and died of the disease 81 months after the initial surgery. Study Description. Liver flukes are very common in Southeast Asia, and bile duct cancer is more common in this part of the world. 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. Take care and enjoy each others company. FOIA FOIA I was stage 2b and advised to follow the standard of care; six months of chemo with a cocktail of gemcitabine and cisplatin. -. I was diagnosed Sept 2017. Careers. Background. It's an 1/2 inch away frm a main artery. 1998 Mar 1;40(4):897-913. doi: 10.1016/s0360-3016(97)00854-7. Is there anyone out there that can give us some kind of hope ?? Epub 2019 Feb 12. I just dont think enough is known that no hope is possible. However, T1 ICC usually occurs distant metastasis (DM), and the clinical features of these patients could help clinicians identify the high-risk population. Cholangiocarcinoma (CCA) is a highly lethal adenocarcinoma of the hepatobiliary system, which can be classified as intrahepatic, perihilar and distal. I had just separated from my husband and I was trying to find my groove as a single mom. sharing sensitive information, make sure youre on a federal Patients with metastases had a much worse prognosis with a median . See theRisk Factorsand Prevention section for more information. I take the chemo well. When the mass on my arm was biopsied, the results revealed just how rare my cancer was. Following subtotal stomach-preserving pancreatoduodenectomy, multiple hepatic recurrences were identified 9 months later, and GC therapy was initiated. My husband has chosen not to know his prognosis, after all it is just an estimation. Chin J Cancer. I quickly made a will and tried to write some letters to my boys and my parents. Surgery for cholangiocarcinoma. He surgically removed 78% of my liver in an eleven and a half hour surgery. 2022 Jun 23;12:896764. doi: 10.3389/fonc.2022.896764. Epub 2009 Sep 25. The site is secure. I guess I should add, when diagnosed stage 4 nonoperarable had spread to the lungs and lympnodes. The multidisciplinary management of gastrointestinal cancer. My oldest son had just left for the Naval Academy and I remember trying to call his commanding officer to tell him to take care of my boy as I didn't think I would get to see him again. I live in Richmond, VA. Im a retired IT executive. What Are Symptoms of Cholangiocarcinoma? He didn't sugarcoat my diagnosis, but he offered hope. 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. If the cancer has spread to a distant part of the body, the 5-year survival rate is 2%. Qual Life Res. The CC Foundation has also been a beacon of hope and light and has infinitely made my world brighter. It is confusing to try to understand what factors lead to re occurrence of cc, and I know there are more long term survivors than what post here. The post-therapy QoL demonstrated a less improvement in Klatskin tumor patients than in patients with other types of tumors. 2010 Aug 10;103(4):469-74 2019 Jan;110(1):303-309. doi: 10.1111/cas.13872. 2021 Dec 15;13(12):1939-1955. doi: 10.4251/wjgo.v13.i12.1939. When they find a post, no matter how long ago, that answers their questions it is wonderful that they found such a helpful post. The new insight of treatment in Cholangiocarcinoma. Siddiqui D, Ferreira R, Khan SN, Narwade N, Mhase S, Pashine AA, Nimje AM, Umate R. Cureus. 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). At the time, I was already back in my classroom, getting ready for a new school year. Primary bile duct cancer is uncommon in the United States. My husband was diagnosed with INOPERABLE liver cancer called cholangiocarcinoma in June. I enjoy woodworking, sailing, and water sports. 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. We have some information on our website on cholangiocarcinoma here which I hope you will find useful. 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 . The whole way cc is treated is evolving and I am hopeful the numbers will continue to improve. Thus, prognostic factors and long-term survival after resection of IHC remain uncertain. The fourth chemotherapy was introduced, and it was also unsuccessful. MeSH doi: 10.1016/j.surg.2017.08.011. Then your doctor will probably want to see you once a year. Before In some parts of the world, a parasite called a liver fluke can infect the bile duct and cause cancer. 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. Endoscopic biliary decompression improved the QoL faster than surgery. Background: This study aimed to determine the role of surgical treatment in patients with stage II intrahepatic cholangiocarcinoma (iCCA). I was devastated at diagnosis when I learned there is, MY STORY I am a patient and an advocate, but first, I am a mother to three amazing sons. 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