February 22, 2016 at 2:27 am #90383lainyMember
OMGOSH, Donna. My Teddy had the CC and after he “relocated” I fought U.C. for 4 years and finally had the Colectomy last May. I had read that Colitis can be a cause of CC. Just lucky I guess!
I am so very glad to hear how well you are getting along and hope to keep hearing you repeat that news! Wishing you the very best!February 22, 2016 at 1:52 am #90382donnacMember
I got CC as a result of ulcerative colitis. It was a fluke on how it was discovered. i had a bowel obstruction that was not diagnosed. I was in and out of the hospital for a couple of months with every procedure available with no diagnosis. My blood levels were all normal and i was feeling fine except for when the bowel would obstruct which was very painful but that was off and on. A surgeon finally operated on me and a tumor on my ovary had blocked the intestine causing this discomfort. It was a shock to go in for a bowel obstruction and coming out with the words that I had bile duct cancer. It was not a huge surprise since i was diagnosed with PSC 12 years earlier however. It metastisized to my ovary and rice like specks in my peritoneum. This was 16 months ago and i am feeling fine except for fatigue but that goes along with the disease and chemo.February 18, 2016 at 11:30 pm #90381patricia-chicocgmail-comMember
My cousin was diagnosed right before Christmas.We are both nurses, neither of us saw any signs of this monster, until she was jaundice, and her liver functions were off the wall. The only thing I can remember is she had been very exhausted for months. There was pain in her abdomen and they treated that as GERD.
Within a month we have this terrible diagnosis. A Whipple was attempted but she had liver Metz so they did not proceed with surgery.They are starting chemo next week. We are hoping the chemo helps
This is very upsetting to the family. And if that is not enough to deal, her brother, my cousin, has ALS. The entire family are just unconsolable. PatriciaDecember 6, 2015 at 5:50 pm #90380dmr1965Member
Looking back at my case, I had gastrointestinal problems way back when I was in the Air Force. Some of them seem to have definitely been bile duct related. That was some 25 years before my diagnosis. As for that, I had severe abdominal pain more than a month before I became itchy and jaundiced.
Not sure it had any effect on my health, but in the Air Force I was exposed to some pretty harsh chemical solvents and asbestos from brake systems and construction work.November 13, 2015 at 1:22 am #90378marionsModerator
Here is a list of chronic inflammatory conditions possibly leading to cholangiocarcinoma:
Primary sclerosing cholangitis is a condition in which inflammation of the bile ducts (cholangitis) leads to the formation of scar tissue (sclerosis). People with this condition have an increased risk of bile duct cancer. The cause of the inflammation is not usually known. Many people with this disease also have inflammation of the large intestine called ulcerative colitis.
Bile duct stones, which are similar to, but much smaller than gallstones, can also cause inflammation that increases the risk of bile duct cancer.
Choledochal cysts are bile-filled sacs that are connected to the bile ducts. (Choledochal means having to do with the common bile duct.) The cells lining the sac often have areas of pre-cancerous changes, which increase a person’s risk for bile duct cancer.
Liver fluke infections occur in some Asian countries when people eat raw or poorly cooked fish that are infected with these tiny parasite worms. In humans, these flukes live in the bile ducts and can cause bile duct cancer. There are several types of liver flukes. The ones most closely related to bile duct cancer risk are Clonorchis sinensis and Opisthorchis viverrini. Liver fluke infection is rare in the US, but it can affect people who travel to Asia.
Abnormalities where the bile duct and pancreatic duct normally meet can allow digestive juices from the pancreas to reflux (flow back “upstream”) into the bile ducts. This backward flow also prevents the bile from being emptied through the bile ducts as quickly as normal. People with these abnormalities are at higher risk of bile duct cancer.
Cirrhosis is damage to the liver from irritants such as alcohol and diseases such as hepatitis that cause scar tissue to form. Studies have found it raises the risk of bile duct cancer.
Infection with hepatitis B virus or hepatitis C virus increases the risk of intrahepatic bile duct cancers.
This may be at least in part due to the fact that long-term infections with these viruses can also lead to cirrhosis.
Other rare diseases of the liver and bile duct that may increase the risk of developing bile duct cancer include polycystic liver disease and Caroli syndrome (a dilation of the intrahepatic bile ducts that is present at birth).
Other possible risk factors
Studies have found several other factors that might increase the risk of bile duct cancer, but the links are not as clear. These include:
Pancreatitis (inflammation of the pancreas)
Infection with HIV (the virus that causes AIDS)
Exposure to asbestos
Exposure to radon or other radioactive chemicals
Exposure to dioxin, nitrosamines, or polychlorinated biphenyls (PCBs)
reprint: American Cancer SocietyNovember 12, 2015 at 10:50 pm #90379iowagirlMember
Nancy….probably a good share of CC is caused by inflammation in the bile ducts. If a small gallstone got stuck in a bile duct and stayed there, I would think that would be sufficient irritation to set up inflammation and the process of developing cancer. Maybe someone else has some info on that. I think I must have read something somewhere, because gallstones ring a bells with my memory.
Julie T.November 12, 2015 at 12:45 pm #90377jathy1125Participant
I was cancer free for 61/2 years and was always reminded there could be one minute cell not visibable to telescope, naked eye,… lurking and they were right!! It took 61/2 years for this cell to show up. I was scanned every 3-6 months, blood draws every month.. during that time and not a flag or clue!! My doctors are focused on the fact that it took 61/2 years to show up is a good thing!
Lots of prayers for all knowing the world of CC!!
CathyNovember 11, 2015 at 12:15 pm #90376nancyelisabettaParticipant
I find this conversation fascinating, because I too have been thinking the same thought and wondering how long my mum had CC before it was discovered by her becoming jaundiced. I’m looking back and wondering if there was a specific time or moment when something changed. Alas it is almost impossible to predict when that was. All I know is digesting food was a problem for a couple of years due to gallstones and there were many foods that had to be avoided. This problem became progressively worse. Is there a link between gallstones and CC? Anyway from discovering jaundice to mums passing was about 6 weeks.November 5, 2015 at 8:57 pm #90375scott-sibleyMember
This is a topic that interests me as well. If they didnt give me a ct scan two months ago, I would still be working lots, eating bad, and probably crushing booze on the weekends. I still feel great; better than before actually because of the diet they put me on. I have slight pain/discomfort where the tumor is, but I had 11 stabs during 3 biopsies. Who knows if the pain is tumor or biopsy trama. I wonder how much longer I could last before symptoms????November 4, 2015 at 10:30 am #90374gavinModerator
Have to chip in with lainy and Marion here and agree that it is way too hard to put an estimate or a guess of how long someone has had CC for before symptoms start showing themselves up etc. Plus you have to take into account that many of the symptoms could be a whole range of other things apart from CC. The jaundice though is a major symptom and one that would tell someone or a gp that something is seriously wrong and needs immediate investigation and indeed that was my dads first signs at all of CC. He was diagnosed in July 08 and died in December 09. The “silent” disease indeed, unfortunately.
GavinNovember 4, 2015 at 6:10 am #90373marionsModerator
Annie….my husband had extrahepatic (hilar) cholangiocarcinoma, also called: Klatskin tumor. He was diagnosed in 2006 and passed away, 11 months later, 2007, at age 62. It is believed that his cancer developed 2 years prior to 2006.
Cholangiocarcinoma is considered a “silent” disease and rarely is diagnosed prior to symptom presentation.
MarionNovember 4, 2015 at 1:21 am #90372lainyMember
Annie. not sure there is an answer. Problem is what we know for sure about CC is not that much BUT we are learning more every day now.
Some of our VETS who served in Asian countries like my husband, we feel sure had eaten this fish that is a delicacy. BUT it carries a parasite called Liver Flukes. The parasite can live in the bile ducts for up to 45 years and you have no way of knowing it is there. It then leaves, leaving behind CC. Everything fit Teddy’s time frame when he served in Korea. Darla’s husband as well. And there were quite a few others. As for others, because we do not know how it got to them, it could have been environmental the timing is different. This is a big question we wish we could answer. SO, if Dad served in Asia for anything it would be possible he had the parasite many years. One thing I insist on is that my Grandkids lay off the Sushi as we really don’t know where the fish they use comes from. Also it seems strange to me that most of our members are from the East and West Coast and quite a few are showing up from Australia. Tell Mom that the other problem is when one is DX with CC they may have had it a fairly long time but it does not usually show up until later. Crafty little monster, Yes? Hope you and your Mom are doing OK. Just OK is good for now.November 4, 2015 at 12:32 am #11849anniechandlerMember
My mother would like to know an estimate to this question. She has asked a few of the physicians who had rendered care to Dad. Replies vary from 6 months to a year, or even 3-6 months, given how fast the course of the endpoint of 11 weeks from diagnosis to passing in October (LFTs/albumin/bilirubin were normal in January of this year). We do know from biopsy report of endoscopic ultrasound, malignancy showed undifferentiated cells.
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