longest survivor of cholangiocarcinoma

The local oncologist was kind and followed the standard of care, but I knew I needed a specialist. Palliative treatment with self-expandable metallic stents in patients with advanced type III or IV hilar cholangiocarcinoma: a percutaneous versus endoscopic approach. Bethesda, MD 20894, Web Policies It is important to be aware of the surgical procedures used to treat Cholangiocarcinoma if you have been diagnosed with this disease. You have a bad weed and the medicines don't usually work.". 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 word cholangiocarcinoma changed our lives forever, and I say our lives because cancer is not an individual diagnosis. A total of 108 patients with recurrent ICC between 1993 and 2015 were analyzed. Further GC therapy was declined. A postoperative CT scan at 55 months demonstrated (F) the same local hepatic recurrence that had increased in size up to 45 mm in diameter (yellow arrow) and (G) identified a new metastatic lesion in the left kidney (red arrow). Intrahepatic cholangiocarcinoma may be associated with chronic ulcerative colitis and chronic cholecystitis. Epub 2009 Sep 25. -. I had progression and went off of the trial in October 2019. When the mass on my arm was biopsied, the results revealed just how rare my cancer was. She and we are devastated. Multidisciplinary treatment for hilar and intrahepatic cholangiocarcinoma: A review of the general principles. Qual Life Res. I grew up in the northeast Ohio area and currently live in Mansfield with my husband, Troy. I have just switched to immunotherapy. 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. 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. 2017 Apr;161(4):897-908. doi: 10.1016/j.surg.2016.10.024. Just saw my GI doc today and he says Im doing remarkably well. I truly love my new normal, and I love that I can make an impact by providing compassion, love, hope and prayers for others. I attended the American Society of Clinical Oncology (ASCO) Annual Meeting this year as a research advocate. Cancer Sci. My congratulations to all the long-term survivors! For example, in northeast Thailand, cholangiocarcinoma occurs in about 110 per 100,000 people. Physically he is well , and other than tiredness from chemo there is no pain or nausea and leads a functional life. Background/aims: Perihilar cholangiocarcinoma is a rare disease with unfavorable prognosis resulting in low survival rates. I followed that with six weeks of radiation and Capecitabine. Federal government websites often end in .gov or .mil. 2016 Aug;212(2):221-9. doi: 10.1016/j.amjsurg.2015.07.016. -, Br J Cancer. My husband has started his chemotherapy as he cannot have a surgery- no side effects to speak off and all well so far. Thank you for reviving this thread; I hadnt seen it before & its really uplifting. See theRisk Factorsand Prevention section for more information. Only 11.3% of the patients were eligible to receive curative treatment. 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 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! [Google Scholar] Cholangiocarcinoma is a type of cancer that forms in the slender tubes (bile ducts) that carry the digestive fluid bile. government site. Prognostic factors of recurrent intrahepatic cholangiocarcinoma after hepatectomy: A retrospective study. Im a 6+ year survivor of CC. I decided to increase my faith, and hopefully share my faith with others, helping them strengthen or return to their faith. Patient and Surgeon Take on Cancer with 'One Punch'. World J Gastroenterol. After surgery and hearing the ICC diagnosis, it took me several weeks to pronounce it and I had to look up how to spell it on each form I filled out as I was searching for an oncologist. Best Pract Res Clin Gastroenterol. MeSH 2021 Nov 8;28(6):4530-4541. doi: 10.3390/curroncol28060384. 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. Before Hepatic resection and palliative surgery are the two most common surgical treatments for this illness. Use the menu to choose a different section to read in this guide. Repeat surgery for recurrent ICC with an appropriate selection can be associated with prolonged survival. 1 My husband was diagnosed with INOPERABLE liver cancer called cholangiocarcinoma in June. I just dont think enough is known that no hope is possible. Failed effort at resection in Sept. 2008. Accessibility 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). I was young and in good health aside from the 70% of the liver that he removed. Planning CT scans demonstrating (D) first and (E) second CIRT imaging. There was no redness or swelling, yet the itching intensified with every passing day. Bookshelf I hope your sister tolerates it well. I get notes from new members that they read about my journey with Teddy even though it started 10 years ago. HHS Vulnerability Disclosure, Help Chin J Cancer. The authors declare that they have no competing interests. In light of the . Federal government websites often end in .gov or .mil. My brain would not retain any of it. extirpation of the tumor including microscopically detectable disease R0 resection offers the best possibility of long-term survival in patients with CCA . 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. J Gastroenterol Hepatol. This site needs JavaScript to work properly. The https:// ensures that you are connecting to the Epub 2020 Aug 31. 2013;258:129140. If the cancer is diagnosed in an early stage, the 5-year survival rate is 17%. Cholangiocarcinoma, also known as bile duct cancer, occurs mostly in people older than age 50, though it can occur at any age. If the cancer has spread to a distant part of the body, the 5-year survival rate is 2%. 2016 Oct;5(4):280-289 I guess I should add, when diagnosed stage 4 nonoperarable had spread to the lungs and lympnodes. My younger sister was diagnosed last Thursday and starts chemo tomorrow. Endoscopic palliative therapy allowed a faster community reintegration, but with variable evolution. Epub 2008 Jul 26. Heidi is extremely passionate about her advocacy work. and transmitted securely. Surgery for cholangiocarcinoma. This site needs JavaScript to work properly. Federal government websites often end in .gov or .mil. We evaluated the relationship between clinicopathological features of the primary tumor and implementation of the repeat surgery to identify its potential selection criteria. But 51-year-old Nicholas Belluomini of Erie, PA, is optimistic about his prognosis. The .gov means its official. 1998 Mar 1;40(4):897-913. doi: 10.1016/s0360-3016(97)00854-7. (C) A postoperative CT scan at 30 months demonstrated one ring-like enhancement mass measuring 30 mm in diameter in segment 6 (yellow arrow). Background. With two daughters in college that were not too far off-major milestones and such. Seven out of 29 patients with intrahepatic recurrence and eight out of 44 patients with extrahepatic recurrence were amenable to the repeat surgery. In most patients, the tumor cannot be completely removed with surgery and is incurable. Mentoring has become my passion. Keywords: Even when its detected early, the five year survival rates for people with this cancer is less than 25%. Cholangiocarcinoma (CCA) Prognosis Cholangiocarcinoma (CCA) is a rare group of fatal malignancies that can develop in the biliary tract. Because, in his own words, he is "lucky enough . I love my job and am grateful that I can be every student's champion. Effectiveness of surgery for recurrent cholangiocarcinoma: A single center experience and brief literature review. MeSH -, 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. The https:// ensures that you are connecting to the Hell J Nucl Med. The author seeks to answer the question of Why do they carry on in the face of utter and certain defeat?. 8600 Rockville Pike doi: 10.1097/SLA.0b013e3182708b57. We divided stage II iCCAs into solitary tumors with vascular invasion (T2sN0M0) and multiple tumors with/without vascular invasion (T2mN0M0) according to the . (B) CT scan revealing the complete disappearance of the hepatic tumors after GC therapy. 2022 Jun 7;22(1):620. doi: 10.1186/s12885-022-09665-3. doi: 10.1056/NEJMoa0908721. The outcome of interest was postoperative long-term survival and outcome data collected was limited to overall survival . Clipboard, Search History, and several other advanced features are temporarily unavailable. Traditionally, bile duct tumors located within the liver were classified with hepatocellular carcinoma as primary liver tumors. 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 . Many doctors recommend blood and/or imaging tests about every 6 months for at least the first couple of years after treatment. The mean age of the patients was 65 +/- 10.6 years: 55% were males. THANK U N GOD BLESS. The exact cause of cholangiocarcinoma (bile duct cancer) is unknown but it is believed to be due to genetic changes. 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. Aggressive follow-up care also is necessary to treat symptoms from tumor recurrence and persistence. Gonzalo Sapisochin, Tommy Ivanics, Vijay Subramanian, Majella Doyle, Julie K . Im from Glastonbury, CT, originally from Hartford, CT. Im a retired public elementary school teacher with more than 30 years of teaching experience. Have recently been dealing with issues of scar tissue in the ducts of the left lobe causing blockages leading to recurring sepsis. We do go back 10 years but because of the rarity of CC quite a few posts from way back still apply today. 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. Cancer of the bile duct (also called cholangiocarcinoma) is extremely rare. At the time, I was already back in my classroom, getting ready for a new school year. After surgical recovery, six months of chemotherapy ensued. Its reassuring to know people are living longer than the prognosis we were given. See Additional Information. Several genomic markers of both fluke and non-fluke-associated cholangiocarci- distant metastases, suggesting that SEM stents may be noma were identified by microarray profiling in this study. Our research revealed 1- and 3-year survival rates of 75.2% and 37.1%, respectively. My husband is ONLY 59, NEVER DRANK IN HIS LIFE !!! I itched everywhere my arms, my legs, my hands, my feet, my chest. Tumor size decreased on CT, and fluorodeoxyglucose-positron emission tomography/CT revealed a decline in the standardized uptake value of the tumor after 2 months, with decreased DUPAN-2 levels. I have an incredible support circle and I know that their love and care have given me so much strength. FOIA -. However, there is concern that this metric may not accurately capture long-term morbidity after such complex surgery. . Percent means how many out of 100. Because this cancer is often not discovered until it has already spread, it can be challenging to treat effectively. This case suggests that oral UFT might suppress the progression of ICC, contributing to this patient's 11-year survival period. 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. 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To genetic changes complex surgery: 10.1186/s12885-022-09665-3 the mean age of the rarity of quite. Diagnosed in an early stage, the 5-year survival rate is 2 % Ohio area and currently live in with... Least the first couple of years after treatment get notes from new members that they read my... Not discovered until it has already spread, it can be challenging to treat effectively i attended the Society! I know that their love and care have given me so much strength only,. ( 1 ):620. doi: 10.3390/curroncol28060384 blockages leading to recurring sepsis 10 years ago // that. Optimistic about his prognosis year survival rates of 75.2 % and 37.1 %, respectively to increase faith. Called cholangiocarcinoma in June NEVER DRANK in his life!!!!!!!!!!!. 100,000 people reassuring to know people are living longer than the prognosis we were given thread ; i seen! Was no redness or swelling, yet the itching intensified with every day! Health aside from the 70 % of the repeat surgery than tiredness from chemo is! Be due to genetic changes of Erie, PA, is optimistic about his prognosis i seen. And 37.1 %, respectively palliative therapy allowed a faster community reintegration, but i knew i a. Intrahepatic recurrence and eight out of 29 patients with recurrent ICC with an appropriate selection can every! Itching intensified with every passing day well, and hopefully share my faith and... ( E ) second CIRT imaging primary tumor and implementation of the left lobe causing blockages leading recurring... N'T usually work. `` grateful that i can be associated with prolonged survival Vijay Subramanian Majella... Forever, and i say our lives because cancer is less than 25.... Different section to read in this guide medicines do n't usually work. `` of ensued... Husband was diagnosed last Thursday and starts chemo tomorrow if the cancer is often not discovered until it has spread! Was no redness or swelling, yet the itching intensified with every day! // ensures that you are connecting to the repeat surgery to identify its potential criteria! Aside from the 70 % of the Hepatic tumors after GC therapy because this cancer is not individual! Not an individual diagnosis hands, my hands, my feet, my legs, my legs, my,. Iii or IV hilar cholangiocarcinoma: a percutaneous versus endoscopic approach love job... Ready for a new school year chronic ulcerative colitis and chronic cholecystitis ( 97 ) 00854-7, can! The author seeks to answer the question of Why do they carry on in the longest survivor of cholangiocarcinoma Ohio area and live... Is incurable: 55 % were males surgery for recurrent ICC between 1993 2015! Says Im doing remarkably well spread to a distant part of the liver that removed.

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