Initial symptoms

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    Hi Charlea,

    My dad was diagnosed back in the summer of 2008. We didn’t notice any symptoms of first but dad was seeing his nurse at the local practice about something else and she noticed a tinge of jaundice in his eyes so recommended seeing his gp which he did. The gp saw the jaundice which was a bit worse by then and referred dad up to the local hospital to see a GI specialist.

    Whilst dad was waiting to get seen by the specialist, his jaundice got worse. The eyes started to get more yellow and his skin started to change also, and the dreaded itching started, all over. One day dad was out shopping and he suddelnly felt very unwell and weak. As it happened, the shop was beside his gp’s practice so he just went in and was seen immediately by his gp. The gp then got on the phone and told the hospital that dad needed to be seen now and he was sending him up that morning.

    I took my dad to the hospital 30 minutes later and he was admitted and stayed there for over 3 weeks while they did all the usual tests, MRI, Ultrasound, Ct and blood tests etc. First they thought it might be gall stones, then gall bladder cancer, then they ruled out pancreatic cancer and finally after 3 weeks they gave dad hhis diagnosis of inoperable CC. From then on, the first thing they did was start to drain the bile to help relieve the jaundice and dad got home for a week. Then he was back into the hospital for another 3 weeks or so to get the metal stent inserted and have his PDT and let the initial effects of that wear off.

    Best wishes,



    In 2003 I went to my family doctor for an awful rash on my hands, and mentioned to him I’d had this weird pain in my tummy for three days that went away and never came back. The rest is history…

    My oncologist later concluded that the pain was a coincidence, nothing to do with cc– something non-serious in my esophagus.


    My Dads only symptom has been jaundice, luckily no pain. He has been jaundiced for 7 months now, on and off becasue his stents keep blocking. Hopefully it will be third time lucky and chemo can start


    Wow intial symptons, massive itching from head to toe. Minor stomach discomfort. Of course they thought gallstones but that never sit right with me. I would call it the rock in my stomach. Thanks to a great family doctor and a surgeon who had seen this before things moved quickly (or so I think) but I have distol where it seems most here have the upper type that is the type that takes out the liver. I know I do not use all of the medical terms that most here know so well but I am learning them.


    It was the Saturday before Easter (2007) and a week before my wedding. I had gone to visit mom and dad to discuss something related to the wedding I am sure .. upon arrival at their home I found dad was not feeling well, complaints of flu-like symptoms; fever, stomach and body aches, he said he had felt poorly that entire week. As my dad had a history of cellulites and I had personally witnessed him go from healthy to near septic shock in less than 6 hours I told him he needed to go to the hospital and get checked out. He was hesitant because it was April and our hospitals were known for being REALLY busy in the ER


    Itching was my only symptom, except for being tired, which I thought was from the Benadryl. I had perfect blood work (including liver function tests) 2 weeks earlier from my yearly physical so they did not do more blood work. Thinking it must be an allergy, the doctor put me on steroids twice and was going to send me for allergy testing. That’s when I changed doctors. My other doctor ordered blood work right away, a CAT scan the same night and referred me to a local GI specialist for stent placement and biopsy. The biopsy came back negative but the local GI doctor (who is no longer here) told me he still thought it was cancer and I should go to a large center. There the biopsy came back positive for cc.


    Charlea, everyone is so unique in their own “discovey”. On a weekend up North in Arizona, Teddy sarted itching. We tried everything from elimination of foods to different detergents and etc., even thinking it was a bug bite from the woods. Just before leaving home in Phoenix to visit our kids in Milwaukee I suggested he get blood work. That was on a Wednesday. On Friday after we arrived in MKE we got a call from the doctor that his bilirubin was a little high (came to find out later it was over 5.0) and to call when we get back home for more LAB work. Didn’t have to as the next day he totally jaundiced and got very sick. Went to kid’s family doctor who said he is jaundiced and ran tests immediately. In 5 days we knew and in 3 more days he was having surgery. It all went so fast we didn’t have time to think and we just lucked out on fabulous doctors.


    My partner Ben’s first symptoms were digestive problems and slight pain in his abdomen. After an initial mis-step at the local doctor where they “mis-read” his blood test (looked at last year’s and said everything was fine), they found that his liver and gallbladder enzymes were “off the charts”. (This was after Ben continued to call them and say something wasn’t right…which delayed diagnosis a couple of weeks).

    After a referral to the local GI doctor they did an immediate MRI which detected a tumor in the liver. After we found out about the tumor I immediately called Mayo and got an appointment there just in case it was cancerous. After a local biopsy confirmed it was cancer we headed to Mayo where they quickly made the CC diagnosis – then through laproscopy determined it had spread so surgery wasn’t an option which is when they installed a metal stent in his liver.

    So, overall from initial symptoms to diagnosis to metal stent – it was about six weeks. Ben had felt great since the metal stent (two weeks ago), and now we are looking at chemothereapy options at MD Anderson in Houston (closer for us).

    The story here – is stay on top of your doctors….you know how your body feels and even when they say everything is fine – be persistent.


    Charlea- I did go to my family doctor and after a short time of chasing our tails and Gods handi-work I was diagnosed. My only sympton was being itchy. I was told to take aveeno bathes. I did casually mention some vommitting, which he then decided to do blood work. My blood work showed elevated liver enzymes. Thank god by sure luck I ended up having a ERCP by a doctor who knew what he was looking at. He told us it would come back negative but that would be wrong. Dr. Alaperty transferred me right away to the transplant team at Barnes-Jewish. I did chemo, radiation and 2 liver transplants. 2 years later I am alive!! My story is a miracle, getting diagnosed was a series of mistakes at the local level, but God intervened and put me in the right people hands. I wouldn’t be here if not for Gods guidance. My family doctor is still amazed.


    I have learned so much from this discussion board, more than I have received from my doctors and nurses. I was curious about how people were diagnosed initially and how they were managed in the beginning. My own cancer was so subtle that I don’t think I would have been diagnosed if I had gone to my regular doctor who was accustomed to my complaints of constipation, fatigue and arthritis pain. After the diagnosis he apologized to me for missing the diagnosis but I told him that “when you hear hoofbeats, you think horses but I had the zebra that no one looks for”. Because I also have MS, much of what I experienced could have been related to MS symptoms and severe osteoarthritis.

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