Hi Gordon; welcome to Cancer Chat.

Whilst I haven't found anyone with this diagnosis on the forum at the moment [@longcliffe]‍, [@charlenesmarmaris]‍ and [@Lmcauley]‍ are just some of the members who have been/are supporting loved ones with bile duct cancer so fingers crossed they and others on the forum in a similar situation will be along soon to share their experiences with you.

We have a section on our website about bile duct cancer that you can have a look at just here but if you have any questions playing on your mind or just want to talk things through with someone then do give our cancer nurses a call. They're available on 0808 800 4040, Monday - Friday between 9a.m - 5p.m.

Wishing you all the best with your biopsy and the journey you're about to embark on.

Kind regards, 

Steph, Cancer Chat Moderator

Hi Gordon. I am so so sorry to hear of your diagnoses. My father in law was diagnosed 11th jan he went into hospital with stomach ulcers then he went jaundice the next day and they found it from that. We are now almost 10 months down the line. His was also inoperable. He has had chemo since Feb which he did amazingly on wasnt sick just tired but it has stopped now and the chemo is no longer working and the cancer is starting to spread quicker so they stopped in june and so far hes been amazingly well besides losing alot of weigh over this year and numrioid infections I think hes doing fantastic and I hope it continues. He not in any pain and never has been to date. I'm so glad you have a supportive wife to help you through this by heart also goes out to her x

Hi Gordon, my name is Debbie and was diagnosed with bile duct cancer in May this year after becoming jaundiced, consultant said I have long months/short year, I have accepted it, the hardest part for me is dealing with other people's emotions. I don't have any pain or other symptoms and feel really well for now. Next CT scan on Tuesday to see how much it's grown and if it's spread or not. No idea what to expect, your the first person I've found with this rare cancer. Keep your chin up.

Hi and thanks for your reply. It was the first I have had and it is good to know that I am not going through this alone. Sounds like your father in law hasn't had all of the side effects of chemo and I am pleased that he has had no pain. Keep in touch!

Hi Debbie, and thanks for your reply. Oddly enough, the other person who has replied to me has said the patient (her father in law) has not had pain either. My CT scans identified gallstones as well as the cancer and I am wondering if the pain is coming from the gall bladder rather than the bile duct.Good luck with your next CT scan on Tuesday. 

Hello, my husband was diagnosed in July with inoperable bile duct cancer that’s spread to his liver. He had no other symptoms other than a bit of pain, no tumour markers in his blood tests, isn’t jaundice and his liver is functioning normally. He is 32. He has chemo two weeks running then has a week off. The first week is always bad, he is rarely sick but is extremely tired. The second week is a bit better, four days after the chemo he’s usually pretty much back to normal. The third week he gets a bit tired but otherwise nobody would ever know what he’s facing. We do days out at the zoo with our little one, normal family things and it doesn’t stop him. He doesn’t get much pain, just the fatigue. He’s just finished round 3 of treatment. 

I hope that gives you some insight.

Thank you so much for your very informative reply. I am now starting to build up a picture of what to expect thanks to you and the other responders. 

Hi Gordon,

My father-in-law first had bile duct cancer 4 years ago, stage 3 - had spread locally, was treated successfully with a whipples operation. Unfortunately in May he had recurrance with a mass on the surface of the liver and a larger mass in his left lung. His only symptom was tiredness at diagnosis. Doctor had sent him for a scan after blood test showed his tumour antigens were sky high. Initially we were told 3 months with no treatment. He is currently on gemcetabine and cisplatin - 2 weeks on chemo, 1 week off. His first scan after 6 rounds of chemo was positive showing that the tumours are shrinking on his current regime. He is keeping well with the chemo, his only symptoms from the chemo are tiredness and weakness. He has had a few sessions cancelled due to low neutrophils and the doctors are currently discussing if he will need a blood transfusion as his haemoglobin is low (which would explain the tiredness and weakness). He initially had very bad heartburn with the chemo but he has been given drugs to help with this and they are working well. He is due his next scan in November after he has finished his chemo. The doctors aren't willing to discuss any further than chemo until the results of his scan in November at the moment. We have found getting in touch with a local cancer charity has really helped us, my partner has been getting councilling to help deal with it. Hopefully you get some positive news from the biopsy. My heart goes out to you and your family! x

Hi Joanne and thanks for your post. Your father-in-law is clearly a fighter, shown by the fact he is still going strong after 4 years. I now have a much clearer idea as to what to expect.