I have bile duct cancer - New to this Forum..

Hello Everyone,

I’m new to this forum but was I was diagnosed with inoperable bile duct cancer in March 2023.

By way of an introduction to me, I’ve written a few lines below and apologise now if it sounds in any way self-indulgent.  We are all of us in the rocky boats so I’m definitely not special.  The reason for joining is because I don’t talk about this stuff very often - especially with other people who are also suffering with their own personal version of cancer purgatory.

In my case, I was told I had about 12 months to live.  I’ve kept myself to myself for the past year and my world has shrunk.  My wife, family and friends of course have been wonderful and, after 6 cycles of a combined chemo and immuno therapy regime last summer, I was thrilled that all but one of my tumours (the largest) have now. seemingly, vanished. The worrisome two on lymph nodes, while small, were situated right on the slip roads to the lymphatic super highway network. They had with clear ‘access all areas’ passes. The fact that they had gone was my oncologist’s cue to speak to surgeons about removing the last one.  After reviewing a CT and PET scan they still declined to go ahead citing complications (which sounded very vague and dismissive). 

After 6 months of immunotherapy it was clear that this, on its own, just couldn’t do the heavy lifting.  The one remaining tumour (in the bile duct) grew by an alarming 50%.

So, in February I restarted chemo.  I’m 4 cycles (8 sessions) into this second round.  An interim CT scan showed the tumour was the same size so, I hope, its aggressive growth has been arrested. I’m now hoping that new scans in 8 weeks’ time will show that the chemo has been successfully going about its work.

If it has reduced in size then the plan is to revisit the surgeons.  I sincerely hope they might change their minds.  I live in hope  - as of course do all those with cancer and, importantly, their friends and families do too.

In the meantime, I’m still coming to terms with living with it and struggling to find ways to be useful and constructive with whatever life I have remaining.  For the past 12 months I’ve not worked.  And after 35 years of working, I’m finding it difficult to adjust to a new definition of me.  

I described my state of mind to my wife the other day that having cancer was like a winding road full of blind bends.  I can never see too far ahead. My horizon is much closer than it’s ever been before so making me very nervous to plan anything.  The threat of the unexpected lies around every corner. I feel paralysed by the lack of any certainty.  For the moment, I try to live in the here and now but I need to be busy again.  I need to have a new purpose.

I sincerely wish you all every blessing and kindness.  I hope to hear from you.

  • Hello Anditic,

    Welcome to Cancer Chat and thank you for joining. The forum is always here for you and we hope that it'll be a place where you can talk more and I'm sure you'll get to know other members as well.

    It's good to hear that your treatment has been working, but I can imagine the uncertainty makes it difficult to know what to do. For most people it's hard to live in the moment, as there's thjs feeling that we should always be busy, and if we're not busy with something we should be busy planning or at the very least we should appear busy. Work does occupy a lot of time so it's natural to associate work with identity, but by changing your outlook on work you'll realise it's just a small part of what makes you who you are. 

    As you say, you're trying to adjust to this new version of you after years of working, which is a great step so keep going. In doing so, it helps to give yourself the space and time to see yourself in this new light, taking it day by day. You'll soon find that the passion and purpose will come to you. I'd encourage you to keep talking as you explore this, especially to the people who know you best.

    I hope this is useful and that the scan in 8 weeks time goes ok.

    Moderator Anastasia

  • I have no idea about your money situation, but have you ever sent your scans off to other hospitals. For example, when my uncle had pancreatic cancer, he was deemed inoperable, and that would always remain so. I can't give names out on here, but there's a treatment centre in Germany that are at the forefront of pancreas, bile etc cancer. By the time, he sent of his scans, the German hospital also deemed him inoperable. but they did state, had he sent them sooner, he probably would have qualified for such an op, when here in the UK he would still have been deemed inoperable.

    Anyway, my point, if you go over to the UK pancratic cancer website (it's the official UK one, so they're not quacks), you'll see a few stories about people having ops in that German treatment centre when they were deemed inoperable here in the UK. They also deal with bile duct cancers. Not saying for a minute you will qualify, but who knows! You'll find the name of the treatment centre across there. Maybe just worth sending your scans to them for a 2nd opinion.