Just diagnosed with Bile Duct Cancer

Hi Tim TimL  and a very warm welcome to the Community but sorry to hear about your diagnoses.

Navigating the cancer journey can be such a stressful and challenging time but getting support from people who have walked the ‘exact same' cancer journey can help a lot. (I have a completely different cancer).

The New to Community is like our reception desk where we look to try and direct you to the best part of the Community for you to get support. The Community is actually divided into dedicated Cancer Support Groups (Discussion Rooms) .…. but I do see that you have already joined our dedicated Bile Duct Cancer support group. This will be a safe place to talk to others with a similar diagnosis, treatment experience, to ask questions and get support.

To connect in with the group click on this link 

Bile duct cancer

…… then once the group page opens you can introduce yourself by putting up your very own post by clicking [+ Create new post] or [ + ] in the top right of the group page.

You can copy and paste the text from this post into your new post.

You may also find it helpful to join our 

Living with incurable cancer - incurable patients only

support group as you will connect with others walking this challenging road (Please join the group but for everyones safety this will then have to be approved by the Macmillan Community Team so will not happen immediately)

You may find it helpful to call the Macmillan Support Line open 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00. This service provides cancer information, practical information, emotional support, benefits/financial guidance or just a listening ear. We also have our Ask an Expert section but do allow 3 working days for a reply.

Talking to people face to face can be very helpful so do check to see if you have any Local Macmillan Support in your area, do also check for a local Maggie's Centre as these folks are amazing and give support to all the family.

Do get back to me if you need further help navigating the community.

Sorry to hear this. My Mum is just going through tests now so I have posted today regards this.

I hope you have support around you. I’m sure there will be lots of help from the forum too. Sending hugs!

Hi Dondons1234 abd a warm welcome to you. I was having a look at your post in our Family and Friends support group….. this is such a challenging time for you all….. I do hope that some clarity as to the way forward comes quickly.

You will see I have highlighted various other support routes over and above this community…. do get back to me if you need further help ((hugs))

Hi Tim. Yes it comes as one heck of a shock doesn’t it.

I was diagnosed at the end of last year. Interhepatic Cholangiocarcinoma spread to Peritoneum.

cannot operate so started on Gem/Cis palliative chemo at the beginning of December.

It might have all been in my mind but after my first treatment I felt like I was floating out of the treatment ward were I had been all day.

I went in with the attitude that this was going to help me. I was so poorly and weight was dropping off me at an alarming rate. I’ve only been sick once after treatment so it might not have been the chemo that caused it.  Since I started chemo I have had the dithers (like a massive caffeine overdose) not nice and cold sweats were I end up freezing.  I get a slight headache and sniffles after each treatment  but nothing bad. My halfway scan showed tumor on liver had shrunk by 2.5cm. Finished my 8 rounds of chemo last week and having scan next week and meeting consultant June 12th for results. 
of course I was upset at first and cried every time I thought about the Grandchildren. Then it’s almost like it’s happening to someone else. Perhaps because I feel better than I did at the backend of last year because then, before chemo, I honestly didn’t think I’d be alive at Christmas as I was so bad.

so, for me, I’m so glad I had chemo.  Will see now what the scan reveals and take it from there. The intent of the consultant is for me to have a couple of months monitoring break. I’m just hoping I don’t go downhill without chemo. I wish you well with your future treatment and hope it works as well for you.