Bile duct cancer

A support group for anyone affected by bile duct cancer to come together, share experiences, and ask questions.

Worried and confused about recent diagnosis!

Neeco
Posted by

Hi everyone, sorry if you’ve seen this post already, think I was in the wrong place I’m new here so I’m hoping this is going to work!

I’d like to start by sharing my dads experience. He had jaundice and trapped wind symptoms and was admitted to hospital. He had numerous scans and finally a stent inserted in his bile duct by ERCP, as they suspected a stricture. He has now been diagnosed with cancer of the bile duct and if the MRI of his liver is free of cancer, he will have the Whipple’s procedure. 

Obviously you do your own research but everything seems to relate to cancer of the pancreas. I am trying to stay positive about his life after Whipples and so I came here. I’m just interested to hear from anyone who has experienced the same thing?

Many thanks in advance, Neeco

lookingforadvice
Posted by

Hi Neeco,

I went through this with my own dad earlier this year - exactly the same symptoms. Unfortunately bile duct cancer is increasing annually in the UK and no one seems to know why! He had a Whipples op in Feb and they found cancer of the bile duct. He’s now doing well and is about to start oral chemotherapy tablets - capecitabine - which is recommended for BDC after surgery to prevent it recurring.


The Whipples is a big op but it’s been very finetuned now, and my dad is now going to the gym twice a week and is basically back to normal - he can eat whatever he wants just smaller portions, and has to take Creon (pancreatic enzymes) with food. He does get a bit more tired nowadays, but it hasn’t massively impacted his quality of life - certainly not to the extent he worried it would.


Happy to answer any questions you have, I remember what a horribly worrying time it is to be in your situation. Hope I can help. 

Neeco
Posted by

Hi there! 

That’s great news to hear! Since looking through this forum it’s been difficult to relate to others situations. Just shows how every story is individual! 

We’re all just hoping that surgery is still an option for him! But it’s really put my mind to rest about the quality of life after the op. 

Would be great if you could update me on your dads progress, my dad felt some comfort in hearing your story. Thank you! 

lookingforadvice
Posted by

No problem at all - I know I would have found it reassuring to hear other experiences! These things really do come uninvited out of nowhere don’t they, it’s crap! I do feel for you all.

What specifically would you like to know about post-Whipples and I will do my best to answer your questions based on how my dad is getting on.

There are a few people in the pancreatic discussion group who are also post-Whipples, the recovery from the op is pretty similar for both pancreatic and bile duct cancer as far as I know.

Will of iron
Posted by

Hello.

I am the Dad of Neeco and would just like to add my heartfelt thanks to the above contributor for sharing their experience.

I have only just been diagnosed and to be honest have been extremely confused about what to expect in regard to possible outcomes.

I found the story from lookingforadvice very encouraging.

I do wonder if your dad had the same niggling jabbing sensations in the upper abdomen prior to his op that I seem to be getting.

I know that every case will be different but it seems only natural to want to hear of similar experiences to one's own.

I would like to continue in this group from time to time, particularly when I think of things to say/ask that do not seem trivial or pointless.

lookingforadvice
Posted by

Hello Dad of Neeco aka Will of iron (great choice in username by the way),

You are more than welcome - having been through it only a few months ago with my own family I know what you're going through and it's rubbish - anything I can do to help relieve some anxiety. You're absolutely right - it's such a baffling time so hearing similar experiences I think is helpful. I would say that the stage you're in now is definitely the part I found the hardest - even including when Dad was recovering from the Whipples - I think it's the uncertainty and waiting for a plan.

In my dad's case he didn't get a formal diagnosis until after the Whipples as the biopsy from the ERCP was inconclusive, so he was even more confused about why he had to have a big operation when they weren't even sure of what it was - but the blood results and symptoms pointed towards something dodgy and he was feeling quite unwell with jaundice at the time, so we knew he had to go for it.

I don't remember him mentioning jabbing sensations - his main presentation was initially heartburn/acid reflux, followed by the jaundice.

Something that helped my dad - his surgeon/clinical nurse specialist introduced him to another patient in the same clinic who was 3 weeks out from a whipples and doing really well - I think this did help to reassure him although he was still understandably anxious. So if you do go down the Whipples route this might be something you can ask about.

As you say every case is different but I can only share our experience.

I wish you all the best - stay strong and keep calm (you too Neeco - daughter to daughter!)

Neeco
Posted by

Hi lookingforadvice,

Reading about your experience has honestly lifted my spirits today! I agree with you that the waiting is really difficult but your story has made me feel so positive! Thanks for sharing with us! 
P.s the daughter to daughter part made me quite emotional! So reassuring that we’re not alone! 
All the best to you and your paps, with the support you’ve provided today I can imagine he’s really proud of you!

lookingforadvice
Posted by

Hi Neeco,

Just to say i’ve been thinking of you and your dad, hope you now have a plan of action. 


My dad has now collected his capecitabine so we are about to start stage 2 of kicking cancer’s butt.