March 10, 2016 at 8:35 pm #7508
My husband’s first symptoms of bile duct cancer were nausea, lack of appetite and feeling generally unwell, but in the newspaper article I read recently it seems that itching can be one of the first symptoms. I’m just wondering what were the first symptoms that others experienced, and which lead their GP to investigate further?March 14, 2016 at 9:57 pm #7533
I think a lot of people have experienced itching at some point, but not always the first symptom. My father started with indigestion which over the counter remedies didn’t help, and it took several visits to his GP before it was finally tracked down to be a liver problem, and he got referred. Best wishes
TeresaMarch 14, 2016 at 10:07 pm #7534
Welcome to AMMF’s Discussion Forum, Slaney and Teresa – and well done on being amongst the first to visit us and post here.
The symptoms of cholangiocarcinoma can be vague and non descript – nausea, loss of appetite, and feeling unwell can certainly be amongst them, and as we have heard many times, so can indigestion, abdominal pain, and weight loss. Itching skin, changes in the colour of urine and stools are also symptoms and are clear indicators of liver problems and should certainly trigger a GP into running liver function tests and a referral to a liver specialist. You can find full details on the symptoms of cholangiocarcinoma here: https://ammf.org.uk/symptoms/March 15, 2016 at 5:49 pm #7545
Many thanks for that information, Helen, and Teresa, too. I think GPs to be a bit more aware of what some of these inocuous symptoms can indicate.May 16, 2016 at 9:38 pm #8966
My dads symptoms were itching. He developed these skin patches which were very itchy. Blood tests within normal range and no pain. Only when he started to jaundice was a scan ordered. Time from symptoms to scan was approx 2 months.
It can be very difficult because CC can manifest insidiously. It can overlap with many other symptoms . Depending on where the tumour developes can mean that when symptoms do eventually develope, it is already advanced. This can affect how effectively it can be treated because the only cure for this cancer is surgical removal.
It is true that if GPs can diagnose this quicker then the patient has a better chance of recovery but HOW they can do this is the million dollar question.September 5, 2016 at 6:07 am #9383
My wifes symptom was abominable pain…..initially diagnosed as gall stones and after some time (unfortunately) and lots of tests, a stent was fitted as she got jaundice and a whipple procedure was planned at Guidford Hospital…..where on the day of this op it was found she had cancer on the outside of the bile duct, not the inside where all the exploratory tests were done.
She lasted 19 months mostly in good health both mentally and physically and died peacefully at home in my arms in Feb this year.October 11, 2016 at 7:34 pm #9612
My symptoms were more innocuous. I had right hip & shoulder pain which did not settle with pain relief or physiotherapy. I thought I had injured myself playing tennis so gave it up, but the pain persisted & even after a referral to a spinal triage unit I was diagnosed with neuralgic pain & referred to pain team for management. 2 days before this appt I collapsed & after many tests & scans was diagnosed with stage IV Cholangiocarcinoma.
Time from first presentation of pain to collapse approx 2 years.
XxAJOctober 12, 2016 at 11:39 am #9614
My first symptoms were nausea, lack of appetite and dark urine. The itching came a few days later, and on Christmas Day 2015, approximately 2 weeks after the first symptoms I noticed my eyes were yellow. I saw a doctor on Boxing Day and was finally diagnosed in January after various scans and a hospital stay. I had successful surgery (PPPD) on 25th February this year and am on my last cycle of chemotherapy which is due to finish next Wednesday. The chemo is only precautionary but I felt I had to have it. I was 38 when diagnosed.October 13, 2016 at 8:25 pm #9617
Good to see you have found us but, of course, sorry you needed to.
Thanks for sharing your symptoms. Your doctors must have been pretty much on the ball to have arrived at your diagnosis relatively quickly (certainly compared to many others), especially as you are younger than most docs would expect to see this – and that this led to your having a resection. (Figures and reports still show this to be a disease of the older person but from what we are seeing, we believe the incidence is becoming more common in younger adults now – and many times, unlike in your case, accurate diagnosis is hard to get, and then it’s too late for surgery).
Best of luck with finishing the chemo – come back and post again when you can …
PS When you get a chance, it would be good if you could put your ‘story’ on the “Introductions’ section …February 18, 2017 at 2:57 pm #10211
My Dads symptoms were tiredness,the feeling sick and generally run down. This went on for almost one year. My Dad had blood tests done and Doctors asked him his drinking habits, my Dad informed the doctor he drank at weekends as he drove for a living. The doctor put my Dads blood test – high enzymes down to “alcohol misuse”. He went back a few months later, it was a miss diagnosis, he was actually low in B12 and had gallstones (also had the CC however this was never diagnosed /investigated).
That was from January 2016. Over the Christmas / new yr, my dad went almost completely off his food and was trying everything to stop indigestion and feeling sick. Over about 3 days we noticed my dad was going yellow, eyes and skin. He was also scratching. His urine became dark and stools pale – it was then his doctor sent him to hospital. The hospital was going to send him home with suspected blockage by gallstones. My brother pleaded for a second opinion and another doctor kept him in as he had a fever and then put him on antibiotics which really seemed to pick him up. It was purely that my dad was booked in for a routine MRI from a separate issue with his back that the cholangiocarcinoma was discovered. So please, don’t let the doctors misdiagnose with “alcohol misuse” insist they do the “other” liver function test which shows up cancer related problems – I’m sorry don’t know the correct name of that blood test. I hope this helps? And fantastic News Matthew, hope you continue to do fantastically well.
Jodie xMarch 4, 2017 at 9:28 am #10312
My first symptoms (in July/Aug 16) seem to have been a prickly feeling in my upper abdomen in a line just below my rib cage. This was on/off for a while so I went to my GP who said that it was probably related to a previous spinal injury and surgery so there the matter was left. In November, I was awakened with a dull pain in my upper left abdomen which quickly became pretty serious. I tried indigestion remedies and paracetamol and promptly vomited them back up. After about 90 minutes the paid subsided and went back to sleep. This happened a further two times in the period before Christmas and each one lasted about 90 minutes. I thought, “Ah well, if I can stand it that long, indigestion it must be.”
Christmas day I had to call 111 as the session was into the two hour mark and showed no signs of subsiding. The On Call Doctor gave me codeine phosphate as he said that it was a duodenal ulcer and I should go to my GP. The GP said it was definitely not DU but Gall Bladder.
At the beginning of January, same deal with the pain and violent vomiting but this time the 111 call was escalated to 999 and I was taken into hospital where after numerous scans (MRI, CT) I was discharged with no diagnosis. (Mystery illness). My GP was not happy and wrote to the specialist who I later saw by appointment. He told me that the scans revealed no signs of tumours or other explainable problems and that the problems might be caused by intermittent twisting on the gut and that I had a hiatus hernia.
I was as happy as Larry with that.
Into February no and 999 again and re-admitted and in hospital for eight days during which time I had Barium Meal (where the aforementioned Hiatus Hernia had disappeared!), UltraSound, MRCP, CT TAP which between them showed mo metastases, vague lesion anterior to the portal vein, soft tissue mass at the porta, dilated CBD(?), thick walled GB (?) thin walled GB (?). During this stay on the ward, I had another episode which lasted seven hours and was mitigated by IV Morphine and IV Paracetamol. A Day or so later, I was discharged but a Doctor came to see me accompanied by a Nurse. I knew that it was bad news when he sat on the bed and the Nurse held my hand. Even so, the illness wasn’t named and after discharge I had no idea of the seriousness of me predicament. Within four days, I was back in A&E with the most painful of these events yet and this time it seemed that the problem was receiving more serious consideration with MDT scheduled. more extensive blood tests in the search for markers and a video conference with a specialist at another hospital.
The pain in the upper left abdomen is apparently un-related (?) and may still be an intermittent twisted gut (volvolvus) and the finding of the tumour may have been just “by the way”. Who knows? I doubt that I ever will.
In all this, my apparent or likely condition has never been named. I found out by reading my copy of the Discharge Letter to my GP.
I have never had the jaundice or tireness symptoms just the those mentioned above.May 7, 2017 at 9:55 pm #10584
Hi, my dad’s first symptoms that made him go to the doctors was chest pain which lasted 5 hours in January. ECG was clear. Then the symptoms you mentioned, not eating, fatigue & generally unwell but in hindsight he said he was itching before Christmas but put it down to heat whilst he was away. He did mention this to the doctor but they just suspected gallstones. He saw the doctor 4 times in January. Ultrasound & CT but only got diagnosed 5 weeks ago. We are in turmoil right now.May 8, 2017 at 7:51 am #10586
We are pleased that you have found the AMMF Forum although, truly sorry that you have needed to. Our very best wishes are with your dad, you and your family at this time of uncertainty. You will find lots of information that may be of help using this link: https://ammf.org.uk/cholangiocarcinoma/ where you will also find further links to ‘treatment options’ and specialist ‘treatment centres’. If we can be of any further help please do not hesitate to contact us.
You have our warmest wishes.
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