Hello everyone

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Hi everyone - I’ve been lurking for a while as it’s been raw but feeling brave today. 
I was unwell (being sick, strong urine and generally feeling unwell) back in March 2023 - after trying to get a GP appointment and failing I called 111 - they sent me to the local treatment centre at my local hospital. 
The triage nurse took a look at me and asked if I’d noticed the yellow rings round my eyeballs - I hadn’t and neither had my husband. I was sent to A&E. 

In A&E I had an ultra sound, a CT scan and blood tests - I was admitted and cancer started being mentioned to me - all the tests were inconclusive but they were using terms like “highly suspicious” but seemed to think it was pancreatic so this is what was talked about every day at ward round. I was completely yellow and jaundiced by the next morning (and terrified) I had an MRI and 2 stents fitted - whilst the stents were fitted they took scrapings to try to get a conclusive answer - I was discharged after a week in the local hospital and told I would be seen in Oxford by the specialists. 

I spent 2 weeks thinking I was going to die  

2 weeks later I went to Oxford and saw Mr Reddy (consultant) who told me that the tests were still inconclusive but it was s high possibility I had cancer and they were proposing a Whipples procedure and they were aiming for a cure - it is major surgery and there was still a possibility I did not even have cancer so it was s difficult decision. 

on 9th May I had Whipples procedure carried out in Oxford - I stayed in for 3 weeks due to complications - it was confirmed by histology it was cancer of the bile duct (not pancreatic) and it was found in 8 of the 59 lymph nodes that were removed during the Whipples procedure. 

I started chemotherapy 2 weeks ago - the oncologist told me my cancer is extremely rare - less than 1% of people with cancer in the world have my cancer - I’m having tablet form chemotherapy for 8 cycles - my last day should be Christmas Day. 

im sharing this in the unlikely event it gives someone hope. 

  • Hi  

    I'm sorry to read of your rare cancer but it is good news that you have been able to have the surgery and now chemotherapy. I hope you are doing ok. I have not had the same type of cancer as you so I hope you don't mind me responding. By responding though, it will place your post back at the top where it may be seen by members of the bile duct group.

    Thank you for posting to give others hope. Best wishes for your treatment.

    A x

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  • I am so sorry to hear all of the above. Could you be very kind and tell me what chemo you are taking in pill form? My husband has bile duct cancer and to say we have had a run around would be an under statement. Our gp’s surgery has done nothing! Sadly my husbands cancer has spread and he’s starting palliative chemo commencing this Friday.  But it is not in pill form, which I understand is much more gentle on your body. 
    By any chance did they powers that be do further research on your biopsy to see if you have a mutant gene?
    Any info you can give me would be very kind. Thank you.