Finding support with Bile Duct cancer (Cholangiocarcinoma)

Finding support with Bile Duct cancer (Cholangiocarcinoma)

In this Community News Blog, we'll be highlighting the support shared in the Community's bile duct cancer (Cholangiocarcinoma) forum and sharing some other ways you can find help.

When you or your loved one has been diagnosed with bile duct cancer (Cholangiocarcinoma), it's important you can find the right emotional support. 

The Online Community's bile duct cancer forum is an online cancer support group. It's open 24 hours a day, 7 days a week and you can find support from people who understand. Because they've been there themselves. 

You might be looking for tips to help you get the best from your cancer nurse and health care team or ideas around coping with side effects and improving quality of life. You might just need to talk. Whatever support you're looking for, the bile duct cancer forum is here for you. 

"Hi guys I stumbled across this forum indirectly looking for support or answers after my meeting with the specialist" - Community member, bile duct cancer forum

This member came to the Community looking for people who might relate with them following a diagnosis of bile duct cancer and waiting to hear about treatment options.

"I am not going to lie it’s a huge shock to me and my family, and to me it hasn’t even quite sunk in yet. I feel ok about it when I know I shouldn’t do but it just feels surreal. 
I am just very confused, scared, nervous along with a lot of other emotions and keep asking myself WHY?" - Community member, bile duct cancer forum

Members were on hand to help them feel less alone.

"I can relate to everything you are going through. I had the operation in July so can answer any questions you may have. It’s hardcore but physically I feel pretty good now. Take it a day at a time."  - Community member, bile duct cancer forum

It can often help to talk to members who've been through similar treatment. You can find out what to expect and find tips on coping through treatment

"...do you mind me asking you some questions re the surgery and recovery etc etc. I am very nervous..."  - Community member, bile duct cancer forum

"...is there anything else I should be aware of or any tips you have or things that you can pre-warn me to expect?"  - Community member, bile duct cancer forum

"As best as you try, you can’t postpone your worry until you have an operation date. All the worrying in the world won’t change anything and this is something you have to do." - Community member, bile duct cancer forum

"Expect to take months to feel back to ‘normal’. I was very impatient, wanting to be better immediately so accepting it will take a while is important. However I am pretty capable again now. Not much I can’t do and it was only less than 3 months ago."  - Community member, bile duct cancer forum

Talking through your treatment plan with someone who has been through it can provide reassurance.

 "It reassures me to know you were well looked after."  - Community member, bile duct cancer forum

Across the forum, you can find real life experiences of people living with bile duct cancer.

"I’ve kept myself busy by going for walks, keeping in touch with people and being very open about my illness. I try very hard to focus on the present day, not to dwell on the past or be fearful about the future. This takes a lot of stress off my mind. I am naturally a positive person so I look for things to be grateful for but most of all, I have an abundance of hope." - Community member, bile duct cancer forum

"I do however share your positive attitude, believe there's no point dwelling on might-have-been. I'm too ill to go walking etc at the moment, or to do much of anything to be honest, but I'm hoping to be able to make the most of the summer once I've finished the chemo, be able to spend some quality time with my son and daughter-in-law..." Community member, bile duct cancer forum

Although information from the Community should never replace the advice provided by your medical team, it can be useful to find out how others have managed through treatment. 

"I'm having a hard time with side effect of the treatment and wondered if anyone else was on the same Gemcitabine and Cisplatin combination?" - Community member, bile duct cancer forum

Knowing that there may be other options or additional support available from your oncology team or other healthcare professionals can be really helpful. 

"The good news is there is definitely things that can and did improve the situation ! I would encourage you to have a talk with your team." - Community member, bile duct cancer forum

"I have had the same chemo as you and had to stop because it made me so ill so I know how your feeling, I am now waiting to have sabre radiotherapy which I hope is going to have a better effect on my tumour, I hope your next session goes better than the first I wish you the very best as I understand the struggles it's so bloody hard xx"  - Community member, bile duct cancer forum

"The new one I’m on seems easier to deal with in spite of some side effects which are actually more manageable. I’ve just finished my second session and just taking it easy so I don’t provoke any unwanted side effects. I hope your next stage of treatment goes well for you."  - Community member, bile duct cancer forum

"My advice is to trust your body and if something doesn’t feel right tell someone straight away."  - Community member, bile duct cancer forum

For those supporting a loved one through diagnosis or treatment for bile duct cancer, the Community is here for you too.

"I feel very alone and so so scared, i was hoping to speak to someone who has a story and it doesn't mean the end...just wondering if anyone is having treatment and able to offer something positive as i am in despair at the minute, I can't lose him too"  - Community member, bile duct cancer forum

"I’ve been on both sides of carer & patient, and I found it so much harder being a carer due to feeling helpless, frustrated and the torture of seeing a loved one suffer. I’m sure you’re a lot stronger than you think & you’ll find hidden depths of strength you never knew you had."  - Community member, bile duct cancer forum

It can be a big relief to find people who have some understanding of what you're going through. Especially when family and friends might not know what to say or do. 

"People react in strange ways sometimes. Possibly their own fear, don’t know what to do or how to react and step away. They normally come round but it takes time, unfortunately." - Community member, bile duct cancer forum

"thankyou so much for taking time  to reply. It's more comforting  than you know"  - Community member, bile duct cancer forum

"...thank you your mums story gives me hope, wow what a fighter!"  - Community member, bile duct cancer forum

"Thank you for taking the time to help me, it's a lonely place as M and I only have each other."  - Community member, bile duct cancer forum

If you're affected by bile cancer, whether you're going through tests, have been recently diagnosed, going through treatment such as surgery, chemotherapy or radiotherapy, there's support available for you and your loved ones. We'd really encourage you to sign up and get involved. 

"I appreciate that we are all different and have very different responses to treatment, but the one thing that has kept me going is hope."  - Community member, bile duct cancer forum

If you'd like any further support with joining or using the Community, the Community team are here to help. Send us an email at community@macmillan.org.uk and we'll do our best to help. You can also contact the Community team on live webchat Mon-Fri 8am-8pm. 

If you're supporting a loved one with bile duct cancer, you can also find support from our family and friends forum in the Community. We also have a dedicated space for carers only, a safe and supportive space for caregivers to share their worries and emotions.

Anyone affected by bile duct cancer can also search for local support groups through our ‘In Your Area’ pages on the Macmillan website here. Type in your location and then you can narrow down your search with the filters and keyword search. If you need further help finding the right support, please do reach out to our Support Line. Our Support Line teams are available 7 days a week, 8am-8pm on freephone 0808 808 00 00, email or live webchat.

Looking for further information from Macmillan about bile duct cancer? 

You can find Macmillan's cancer information on bile duct cancer (Cholangiocarcinoma) here. 

A UK based charity called AMMF also support people with bile duct cancer. Click here to find their page of useful links.

We hope you've found this blog helpful in outlining the support available to people affected by bile duct cancer from the Online Community, in addition to linking you to other useful resources from Macmillan and other organisations. We'd welcome your comments and feedback in the comments section below, or you can contact the Community team privately by email at community@macmillan.org.uk

We'd also love to hear from you if there's a subject you'd like to see in a future Community News Blog. 

Anonymous
  • I am really pleased to see that the profile of Cholangiocarcinoma aka bile duct cancer is beginning to be raised via this site.  My Mum was diagnosed at the end of May 2021 and we had never even heard of this cancer, it was then incredibly sad to hear that Mum's cancer was inoperable and she was not fit enough for treatment.  My Mum passed away at the end of Nov 2021, she survived 6 months without any treatment, and this was mostly due to Mum's determination to live.  This cancer is so brutal that there is no time to waste researching options, and people diagnosed need to be immediately and automatically referred to a specialist centre so that they can have options that may extend their life.  It is too difficult to navigate this cancer as the carer or patient, and I would implore Macmillan to campaign for much more speedy action at the point of diagnosis.  This used to be a rare cancer, but I fear it is not rare nowadays and we really do not know why.  Thank you for raising the awareness thus far, and please do continue to bring this cancer into the public consciousness. 

  • Hi ,

    Thank you for sharing your thoughts on our blog, I'm glad that you're pleased that we are talking about bile duct cancer. 

    I'm sorry to hear that your mum passed away last year. I'd like to pass on our condolences from the whole Community team. It sounds like this experience has been a lot for you and your family to go through, and I hope you feel you have the support you may need. You might find our "Bereaved family and friends" group to be a helpful place to find support on the site during this time. 

    I will pass on your feedback that you feel Macmillan should campaign for more speedy action at the point of diagnosis with bile duct cancer. Thank you for taking the time to share this with us. It sounds like you might be interested in exploring Macmillan’s “Forgotten ‘C’” campaign, if you’ve not seen this? This is Macmillan’s campaign for Governments across the UK to invest in enough specialist cancer nurses to provide the vital care people living with cancer need. There are lots of different ways you can get involved if you would like to. You can also find out more about becoming a campaigner with Macmillan here.

     If you’d like to talk through your experiences, please remember you can also contact the Support Line. Our teams here to support and help you. You can call Macmillan’s Support Line for free on 0808 808 0000 (7 days a week, 8am to 8pm). You can also contact the Support Line over live webchat or email.

    We aim to support all our members as best we can. If there's anything else we can help with at all or if you have any questions, please don't hesitate to let us know. You can contact the Community team every day via email at community@macmillan.org.uk

    Take care,

    Eliza

    Macmillan Community team