Treatment consultation tomorrow

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Hi. Where do I start? I am 48 years old with 2 kids (14 years and 12 years). About a 7 weeks ago I was having really strong wee which I put down to dehydration. I then developed about 4 weeks ago itchy skin, again i just put it down to the warm weather. It was only on the 18th July that I noticed Jaundice so got bloods done on the 19th. Bilirubin levels were 250 so not good. Hospital all day on Friday 21st for a variety of tests to tell me I had Bile Duct Cancer. I then had an MRI scan on the 27th. My consultation meeting is tomorrow 

I want to know the next steps as I'm hoping that they can get in there remove what they need to and give me Chemotherapy to get anything they've missed. I want them to fight for me as I'm only 48

My biggest fear is they say what I don't want them to say - that an Operation is not possible. I have a wife and 2 kids and I'm not ready to leave them

Apart from getting tired more easily (but I think that is just from lack of sleep from the stress, worry and itchy skin) I have no pain or feel any different to what I was before

I'm not expecting any reply I just needed to voice my anxiety and fear for my kids

Much love to people going through a similar situation x

  • Hi  and a very warm welcome to the online community which I hope you'll find is both an informative and supportive place to be.

    I'm sorry to read that you have recently been diagnosed with bile duct cancer and it's natural to be worried about what might lie ahead.

    How did your appointment go? Hopefully you have an idea of what your treatment plan involves now.

    It would be great if you could pop something about your diagnosis and proposed treatment into your profile as it really helps others when replying to you and also when looking for someone on a similar pathway. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.

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  • Thank you for your reply. I am currently in hospital to have a drain fitted to get rid of the jaundice and will do a biopsy whilst in there. 

    My case has gone to Regional specialists who are meeing this week and I have another consultation Monday. So I will know more then. 

    Thank you for reaching out. Even though I am trying to remain positive it's a comfort to know people care x

  • Nirch - how are you getting on? 

  • Hi Janey. Much Love to you reaching out

    Unfortunately I developed Pancreantitis and reduced Kidney function so consultation was cancelled Monday.

    The facts are that my Bilirubin levels did peak at 290, yesterday is was 144  and today its 139. Still a way to go to get it below 100

    Creatinine levels have gone down from 189 to 136 so again a bit to go to hit the top average range of 104

    My EGFR was 22 on Monday, 25 yesterday and 53 today so my kidneys are recovering

    All positive and moving in the right direction. Only when I sort this Jaundice out will I get the appointment for the consultation and probably a few scans chucked in. So still in limbo. Just need get over this blip xxx

  • Nirch - I’m sending you best wishes and lots of positivity - please take a minute to have a read of what happened/is happening to me - I’m hopeful you get your jaundice sorted and can get things moving along x 

  • Hi Nirch, How are you doing? I was just reading your story and my nightmare started about a month before yours. Would love to hear your update and how you are doing.
    I am 58yrs old, had felt a bit off and been to Doctor’s and been diagnosed with gastritis by Advanced Practice Nurse, I had very dark urine, which I took a sample of at the time, this was 5th June 2023. I had gone back to work and wasn’t sleeping and was very itchy. After 4 days my boss said I looked a funny colour and my eyes were jaundiced. When I got home I rang my Doctor’s straight away and I had an appointment that evening 15th June. Doctor told me to take in another urine sample. He had a quick feel in my liver area and said he was making an urgent cancer referral and also arranging a CT scan. It was all a bit of a shock as I had no pain and he knew there was something amiss straight away.
    I had a telephone appointment with a Gastroenterologist within 2 weeks (this felt like months when I was just left to my own devices and was so itchy and jaundiced and sick with worry), which was a tick box exercise as I hadn’t had the scan. Once the scan was done it was up to me to chase up the result through the Doctor’s and once the result was available the next morning the Gastroenterologist was on the telephone advising me there was a mass on the CT scan and I must go straight to hospital, this was 7th July. I still believe if she had seen me rather than a telephone call I would have been taken in earlier. The CT scan just confirmed what my GP suspected. My bilirubin was sky high (they had been monitoring me on blood tests whilst waiting for scan results). I then had an endoscopy of upper GI tract which came back clear and was then sent over to a specialist hospital for ERCP to try and fit a stent which was unsuccessful and to take a biopsy (also not successful). I had a PTC to fit a drain at first and then eventually the stent was fitted and the drain removed, which took a couple of weeks due to infections and strikes. Surgery was ruled out as an option due to where tumour was and what it was wrapped around. It had started in bile duct and gone into the liver (7.5 x 5.5 cm) I also had another biopsy using an ultrasound to guide. This eventually gave the intrahepatic Cholangiocarcinoma diagnosis and I was told I had 6-12 months to live. I’ve now been home for about 4 weeks. My bilirubin from being over 400 at one point was 21 last week and if you saw me now you wouldn’t think there was anything wrong with me but sadly that’s not the case, as with you. I have started GemCarbo chemo now and am on my third week and so far so good.
    I feel the same, we have 2 daughters age 17/15 yrs and I don’t want to leave my husband and family, I feel like the diagnosis is so final and hopeless and I want somebody to come up with something to help me fight this thing and have a future!

  • Hi Snobs1

    I was quite ill getting over my jaundice - acute kidney failure, pancreatitis and had 22 ltrs of bile removed. Managed to get over this. I had my bile drain internalised, and had a camera procedure which confirmed that it hadn't spread which is a massive relief

    For me the cancer is in the left bit of the bile duct tree branch a little bit which means an op is an option at this point. However removing the cancer would kill off a lot of the liver. I need a minimum of 35%. At the moment I have 25%. They will do a PVE procedure where they regenerate the good part of the liver by slowly cutting the blood supply to the infected part so they can reach this %.

    This op is planned for next Wednesday (it should have been today but the machine broke down and is being repaired). Once I get the desired % of the good liver, they will operate to remove the cancer

    I pray this remains the case as I am only 48 and not ready to say goodbyes. I am coasting the knife edge...not sure which way it will go but I am being super positive and locking away any negative thoughts in a box

    I hope your current treatment provides some future options. Be positive and sending you lots of love and support x

  • Hi Nirch, that sounds like positive news that you can have surgery, hope all goes well with that next week.

    Glad you’ve got over the bile problems, it’s mind blowing how much is produced when you see it in the bag.

    Good luck with everything and I am sending you positive vibes.


  • Hi Snobs. Been thinking about you all day and wondering how things are. 
    Must admit the weather doesn’t help a jot does it. My husband is off for his first bout of chemo tomorrow and I’m gutted I can’t sit with him. But that’s how it goes. 

  • Hi ARY21

    They let you stay with your other half at the MacMillan Unit where we go for chemo. Space is a bit tight but there is usually room for a visitors chair, it’s so nice to have that support, hope they let you stay with him. Good luck with it tomorrow.

    We had a nice break as week 3 there is no chemo so we went out for lunch, which was lovely. If only all this chemo was going to give us a chance of clearing the cancer and living a normal life again. Snobs1