Questions about changes before diagnosis

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    The question was easy as are the answers. Now someone needs to connect the dots after we get more info. If i was easy, someone would already have done it. I’m just trying to ask the question a different way and hope that people’s answers will trigger the memories of others.



    We figure Mark had it about 5+ years before diagnosis. That is going off of the “gallbaldder” symptoms that he had off and on for those 5 years…..Right upper quadrant pain (pretty significant) with burping, bloating and occasional chest pain. He went to the doc 2 1/2 years before diagnosis and had a negative ultrasound and never had the HIDA scan.
    Unfortunately there are a lot of things we could blame in on for my husband. He has a family h/o colon cancer and multiple other cancers (prostate, skin, uterine and lung) all in 1 degree relatives. He has a h/o Hodgkin’s lymphoma and the cc was located at the edge of the radiation field for that. He also lived “downstream” from an apple orchard then golf course growing up….think 60’s and 70’s with pesticide and other things. Then he worked for years as a machinist exposed to solvents and metals.
    Then he is diabetic (from the previous radiation) and has taken a variety of medications for this including oral meds and insulin. I know that the elevated liver enzymes were ignored for years as they are a side effect of several of the drugs. He was over weight about 50# and started on statins for cholesterol. He also spent several years as a volunteer firefighter which who knows what he was exposed to fighting fires.
    The only things he didn’t do was smoke….never never but was exposed to second hand. And he has never traveled outside the US.
    I can’t think of any specific stressor that might have happened around the time the cancer would have started growing. We had four kids at home and the time so there was always stress but nothing out of the normal.

    Duke, I think it’s great you are trying to gather all the information you can. Someday some one will figure something out.



    I was daignosed about 2 months after graduating from Nursing school.
    I had hip pain for about 8 months before I finally went to the doctor so I know I had it then.
    Before that I had fatigue but I always assumed it was due to stress from school.
    I was also diagnosed with high blood pressure while in school and my medicine was making my heart race.
    I did have some weight loss towards the end of school about 6 months before my diagnosis. But I attributed that to 12 hour shifts during my preceptorship. Plus, I could afford to lose the weight so I was happy about it.


    My husband has diabetes, has had a quadruple bypass and a year before his diagnosis, and had a stent put in the “widow maker” vein in his heart a year before his diagnosis. He was on Crestor for many years but discontinued because of side effects (neuropathy). Put back on prior to his cc diagnosis. John had no symptoms other than weight loss, but he was experiencing major stress/depression since he retired two years ago. He was experiencing some forgetfulness/memory issues prior to retiring…thought it was due to the anesthesia from surgery. I know that stress is deadly to your body and often wonder if that compromised his immune system.
    He cardiologist told him last month that he has certainly beaten the odds with all the major traumas his body has been through. Praying that his luck holds out and that I am still giving you updates for many years.
    Melinda A


    Duke, maybe 18 months before diagnosis I was prescribed a pill for toenail fungus. It required a blood test to determine the health of my liver before prescribing this drug because ” it is hard on the liver. ” I have wondered about any relevance here as well, Pat



    Two years before diagnosis my mother-in-law developed a heart arrhythmia which she started treatment for. I think that she was also under quite a bit of stress around this time.

    1.5 years before diagnosis, she began to act strange, just not herself. Confused in a way-forgetful. Unable to handle any life situation that was slightly out of the norm.
    She also began to change her diet, complaining of stomach issues. She thought it was a possible gluten allergy.

    3 months prior to diagnosis, she told me that she thought she had stomach cancer, and that she had been losing weight. 2 months, right upper quadrant pain, ascites.

    In the late 1970s she was accidentally caught in the spraying field of a bi-plane crop sprayer, and developed fulminant hepatitis sometime after that, which she recovered from. This hepatitis was not related to a virus. It developed for an unknown reason.

    Unresectable Intrahepatic CC June 2010.


    From the ICPR data base: (177 responses that were complete)

    18 responders had been to Japan before diagnosis.
    3 to Laos
    12 to mainland China
    8 to Russia/USSR
    7 to Taiwan
    10 to Thailand
    14 to Vietnam
    (total of above 72)
    112 – none of above

    It looks like there were about 7 with more than one country marked. Given our ages, many of these were probably related to service in the Armed Forces in Vietnam.

    Marion – maybe you could have Cambodia and Korea added the next time the survey is revised.



    Great responses. That’s what I was looking for, possible triggers.

    You’re right, we may never know all the answers, but we have to ask as many questions as possible.



    Lainy, I too still believe in the liver fluke theory as Jim was in the service during Viet Nam, I think it was already there in the bile ducts and the statins may just have brought it to life and made it develop more quickly. This is all just assumption on may part. Jim was never sick either other than having to have his appendix removed years ago. After being on the statins he was also told he was board line diabetic.

    Deb, Jim was thin and had not smoked or drank in years. Being thin worked against him as he didn’t have anything extra to help fight this. Was also very active until the CC.

    Interesting that I also know of a young man who was an entertainer and toured in those countries who also died from CC in his late 40’s.

    And so it goes. We may never get the answers.


    This is a topic I think about from time to time. We moved cross country, from east coast to west, seven years ago, to a less stressful job environment for my husband. My husband expects a lot from himself though, so I’m not sure his stress level was actually any lower :) The doctors believe his CC started about two years prior to diagnosis in May 2014. My husband has inherited high cholesterol, and has been on statins for more than 30 years. We followed a heart healthy diet (limited red meat, no cheese or dairy, lots of cold water fish and leafy greens). My husband was about 15 pounds overweight though. I have read that certain conditions, such as diabetes, being overweight, a high sugar diet, etc., can cause a chronic state of inflammation in the body and, with the body trying to fight the inflammation, it may compromise it’s ability to repair cell damage or overcome cell mutations that could lead to cancer. So in our case, I have thought my husband’s HCC may have been due to chronic inflammation or maybe tied to his high cholesterol levels. Or perhaps something in his diet. He also spent two weeks in South Korea 12 years ago, so could have contracted liver flukes – I think pretty unlikely though as it was such a long time ago. The idea mentioned in this thread about statins impacting liver function is interesting. I had not thought of that. However, my husband’s liver function tests were always normal until just before diagnosis. I do think that, because the cc is originating in the bile ducts, it is highly likely that the culprit(s) has something to do with something ingested or is somehow involved in the digestive process. I can’t wait for this mystery to be solved, as it can potentially allow so many people to make choices that could prevent CC from ever starting.


    Well, Teddy was never sick a day in his life except for a Hernia. I still believe he ate that fish with the Liver Flukes in Korea as the time frame really fits. Being Sicilian he would eat any fish! As for statins, I have been on them for YEARS. The only thing I suspect is that they may have caused my Diabetes II. Julie, I take them every other day instead of daily and my counts are always just as good. Mmmmmm


    Darla, I , too, have wondered about the statin drugs. I was taking one from 2002 until 2010, and took myself off of it on suspicion that it was causing some bad side effects for me (they went away or almost went away after I discontinued the drug). Nothing will get me to take one again. I haven’t done any recent research to see if any connections have been found to CC, but it certainly seems to be something that should be researched due to the potential liver damage.



    Interesting topic. My husband never took any medications but had been advised to try statins for his cholesterol levels. I often wonder if that triggered the CC in his liver. They constantly test liver enzymes when on statins, but interestingly enough, his were always normal until close to the end. One of the many reasons it was hard to diagnose.



    Duke… year before diagnosis, I contracted C-Diff, a nasty, bacterial infection of the colon. Despite treatment and confirmed that the infection was gone, I continued to have semi-diarrhea like bowel symptoms. After diagnosis and surgery, I found out about H. Pylori and asked to be tested. Sure enough, I had antibodies that confirmed I had had H. Pylori, but not if it was still in my system. A “poo” test confirmed that it was no longer in my body, Since I had not been treated for H. Pylori, it seems the only way it was removed was by “cutting” it out surgically, which is what I believe happened when they removed the left liver lobe during resection . I haven’t had those symptoms since surgery.


    I think that my husband’s tumor was very fast growing and began less than a year before diagnosis. He had been having a lot of heartburn and low tolerance to acidic and spicy foods. However, it was found that he had H.Pylori infection, which I see mentioned quite often by cholangiocarcinoma patients. Ron had annual physicals but they never checked any of the liver enzymes. His last physical was 6 weeks before he ended up in the ER. His low hemoglobin was the only abnormality noticed at that physical. Ron was a smoker for over 40 years and had quit smoking 3 months prior to diagnosis. Other than the above, I can’t think of any recent changes in his lifestyle.

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