Bile Duct Cancer - cholangiocarcinoma returned after 7 Yeara

Had cholangiocarcinoma in 2013 , had 35% liver resected and 6 months chemo. Checked up for 5 years discharged 2018. 
Had a year of pain and episodes of 3-5 days of feeling very poorly lethargic, couldn’t eat or drink. Terrible pains in right side   No one listened refused to be referred by GP. Paid privately and after 3 months finally diagnosed with inoperable cholangiocarcinoma , unable to give time as Oncologist hasn’t heard it returning after 7 years. Offering radiotherapy to shrink tumour and reduce pain. 
Offered very strong chemo but I am like I don’t know would rather stay well. 
nightmare. Feel lost. 

  • Hello Becky1704,

    Sorry you find yourself here, not sure really what to say to you about your situation but wanted to reply. My husband is 61 with inoperable cholangiocarcinoma and secondaries in his liver. In palliative care and having chemo. I am not surprised the doc hasn't heard of it returning after 7 years because, I have read and researched everything I can and not found anyone that survived more than 5 years and then only after having it being found really early. So I think you have angels on your shoulder. Don't know anything about radiotherapy as husband is having gemcis chemo, it was helping his symptoms but has had 6 eekjs off due to covid and symptoms returned, he is back to chemo on Tuesday if his bloods are ok on Monday. On the day of his chemo he is very sick or at least naseus for 8 hours but then other than tiredness for a bout 4 days he is OK. You need to talk to one of the nurses on here perhaps to help you with decisions. Macmillan local support also will help you.

    Very best wishes Christine. X

  • Hi Becky1704,

    I have cholangiocarcinoma and had a Whipple procedure in June 2018, it had already spread and I’ve been on chemotherapy and immunology drug trials for the last 2 years.

    I too have never come across a reoccurrence either in my research (I am not medically trained but have done a lot of work on the subject).

    I assume you didn’t have a Whipple in 2013. Would you mind asking me what options, if any, have been offered apart from radiotherapy?  It’s just to let you know about some of the conversations I’ve had and some of the experiences that might be worth sharing,. 

  • My husband suffered with Primary Sclerrosing Cholangitis for many years which lead to him having a liver transplant 13 years ago, when they removed his liver they discover a cholangiocarcinoma (cancer of the bile ducts) and had they known about this cancer they would not have given him a transplant ... so he was pretty lucky in that regard.  The consultant told us that the cancer would come back and they have,  over the years, continued to scan and monitor him expecting the recurrence ... last October he was diagnosed with another cholangiocarcinoma, so it did return but it took 13 years!  The consultant said that in all of his years in medicine he had never come across a recurrence after so many years.  He was told that it was incurable, but could be treated with chemotherapy with the aim of prolonging his life as much as possible. 

    My husband started chemotherapy in December 2019 but suffered with severe side effects and complications and became so ill that he decided not to continue with it for the time being. However the chemo did shrink the tumour.  He now has abscesses on his liver and a portal vein thrombosis which aren’t good news but he is currently quite well, all things considered.  He was given 12 - 18 months, but I firmly believe that as this cancer was slow to reappear, it will be slow to develop and I remain positive that we have a few more years together.

  • Hi Christine

    I have finished Radiotherapy and it was ok all in all. The pain definitely spiked and had now subsided. But it isn’t much better then pre radiotherapy. Doing CT in about 4 weeks. 
    I hope your husband continues to do well. The medics know so little that makes it difficult. 

    Becky xx

  • Hi Andy

    I did not have the whipple Procedure done in 2013. I only had a liver resection 

    I have only been offer Radiotherapy and Oncologist says normally with reoccurrence you have a year. I have had pains and issues for about a year. 

    hope you continue to do well

    Becky xx

  • Hi Emanjay

    The 13 years are amazing. My oncologist couldn’t believe mine came after 7 years. Where abouts are you. 

    I have only been offered radiotherapy and a C T scan in about 4 weeks. 

    The limited knowledge makes it so scary. 

    Becky xx

  • We are in Suffolk, but my husband’s condition is managed by consultants at Addenbrookes hospital in Cambridge. It is a very good hospital and I can’t fault the care they have given him over the years, even now during this pandemic they continue to monitor his health.

    Where are you?