Bile Duct Cancer with metastasis

Hi Daffodil68 

I’m Anne, one of the Community Champions here on the Online Community and, although I'm not a member of this group, I noticed that your post hadn't had any replies yet. Responding to you will 'bump' it back to the top of the discussion list again.

I'm sorry to read that you're struggling with communication from your hospital and that you "don't know what to trust". I presume you're talking about your husband's consultant or cancer nurse specialist (CNS) so it might be worth your while speaking to the hospital's PALS (Patient Advice and Liaison Service) as they can help resolve concerns or problems you're experiencing.

If you meant you don't know what information about bile cancer you can trust then you might want to have a look at this information on bile duct cancer from Macmillan. It gives information on what type of bile duct cancers there are along with possible treatments.

You say

Daffodil68 said:

I don’t know how to feel

but there are no wrong or right ways to feel. Do you have a support network around you both? You might like to join the carers only group as that will give you the chance to share your worries and emotions with others who have a loved one living with cancer. If this is something that you'd like to do just click on the link I've created and, once you've joined, you can start a new post in the same way as you did here and join in with existing conversations by clicking on 'reply'.

While you're waiting for replies, it would be great if you could put something about your husband's diagnosis into your profile as it really helps others when replying to you and also when looking for someone on a similar pathway. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.

Sending virtual (((hugs)))

I’m so sorry to hear of your husband’s diagnosis and very sad you are not feeling supported as you should be.  I am wondering if you have been in touch with the AMMF charity website that offers a huge amount of advice in this cancer?  It’s very important to be treated at a specialist hospital as quickly as possible, you can contact them directly too.  Hoping you soon find the best treatment plan for your husband. 

Thanks for this. Yes I’ve seen that website and joined the Facebook page which has been useful. Our problem is actually getting someone in the medical profession to start him on a treatment - any kind of treatment! We’ve had no contact from our hospital for weeks. When we try to chase it up, we’re told stuff is being done / being discussed, (MDT). We’re lucky that in trying to go private (which didn’t work out as we saw a hpb surgeon in desperation, but he was the wrong man!), that we have a nurse from a different hospital who worked for the private surgeon in the nhs, trying to help us. She’s the one who told us what he has, so now we’re in contact with a private oncologist who we’re praying will be able to help. Sadly, it is now Easter so may have to wait another 2 weeks to see him. It’s very distressing..  I’m sorry - I’m just ranting now! 

Feel free to rant if it helps!  It's a horrible time when you're waiting and have no idea what the treatment plan will be. 

I'm pleased you found the Facebook page, you are more likely to connect with others in a similar position or have been and can offer some really useful advice.  And it all comes with kindness.

I hope you soon hear back from the private oncologist.  Are you close to a specialist hospital?  xx

We’re in Nottinghamshire. There’s a private cancer centre near us. The oncologist we’re seeing specialises in urology in the nhs  but also this in his private practice. There was an expert there but he has now left the private practice- no idea whether he is still about. Got chemo booked for next week. Keeping everything crossed. x 

I hope this week goes well for you xx