New to the group

Hi, my husband was diagnosed with bile duct in September 21, originally the doctor said they can’t cure but then looking further into it they said it’s operable. So in November he went for surgery which wasn’t successful as they couldn’t remove the tumour. His since then had the right side oxygen stopped to his liver and 3 months of chemo to prep him for an operation again. So after all the scans and a 6 week  break from chemo hopeful for surgery, we’ve just had the surgeon on phone saying the tumour has spread to the left side of the liver and operation is not an option anymore. We are completely devastated with this news. I was hoping if anyone can help with similar situation as I believe chemo is only option offered and we don’t know where to go who to speak to, what to expect. 

  • I lost my dad to terminal stage 4 bowel cancer in 2022 I feel like I can't talk to my mum about how /i feel it's like my feelings thought and emotions don't matter at all and she doesn't want to understand what i am going through> I know they were together for a long time but this is hard for me too and I just feeling like were going round in circles. The 3rd iof june is going to be hard for me because it is the anniversary of his death. How do I move on and get on with my life slowly? Joanne 

  • Am so sorry for your loss. I guess everyone deals with bereavement in different ways. 
    losing a loved one is never easy and talking about them really does help. Maybe you could talk to another family member and get the support you need if your finding it hard to talk to your mum, but do look out for each other. 
    Stay strong 

  • Hi Joanne, I’m so very sorry for your loss. It’s such a heartbreaking thing to go through.

    My own Dad passed away March 2021 from cancer and so I understand how you feel. My parents were together for 53 years and my Mam is very much the same as you describe. You are two people going through the same and yet different journeys. That’s how I feel anyway. My Dad done everything for my Mam and she’s totally lost without  him. I feel like I’ve really put my emotions aside to take care of her and sometimes it feels like she isn’t grateful at all but I try bite my tongue because I try put myself in her shoes. To be honest it’s tough and I’m sure you’re in the same situation yourself. 
    It’s  only really after 6 months I actually realised just how traumatic it is to lose someone from cancer Sleepy. We spend so much time thinking day by day about treatments, appointments , care taking and then palliative. Then there gone and then you just feel so lost. 
    I spent 2 weeks in palliative at home with Dad. Helping him wash, go to the bathroom and trying to help him stay comfortable. It’s really traumatic and at some point you have to look after yourself now. You need time to process your own feelings and take a back step as hard as that it.

    I stay with my mam once a week but see her every second day and that’s from staying with her 3 nights a week and visiting every day. 

    it’s so hard to try get back to your own life and not feel guilty! 
    Do you have siblings yourself or is it just you and your mam?

  • Hello Amd67. I am sorry to hear about your husbands diagnosis. I have always been a silent reader on this forum up until today. I finally feel like I can speak about my own experience for my Mum who to was diagnosed September 2021, hers was intraheptic bile duct cancer. I tried to stay hopeful reading comments on here and various sites that after chemo, some people have been able to have surgery to remove the tumour. My mum now 57, had GemCis for 6 months which she tolerated amazingly with. She was only sick once and then ever since took a sickness tablet the day after chemo and it kept that at bay (along with some sea wristbands). Other than that, she was a little fatigued and the last couple of sessions she had low white blood cells and low platelets.. however that increased by the time she had chemo and only had her last one reduced to 75% strength. The chemo shrunk down the tumour from 11cm to 9cm (although we were told it hadn’t shrunk, but had kept the same). We had tried and tried to push for scans suggested by our second opinion which kept getting refused by our 2 local hospitals. We had been given incorrect information throughout, that the tumour was involved in major artery and portal vein, that it hadn’t shrunk and the major that it was inoperable. We just wanted to be given the benefit of the doubt and even when we had an arterial scan 8 months after diagnosis, they advised it was 100% in the artery. We had this re looked at by our second opinion and he confirmed this was incorrect and there was possibility for a resection. He confirmed NHS waiting time was 8-12 weeks due to new MDT’s and different opinions. There was though space available private within a few days. By no means did we have the money in our bank, or had no PMI, but we done everything we could to raise this money. My mum is now 3 weeks post op, and the surgeon said it couldn’t have gone any better and I just can’t believe I am writing this. I just want to say, to not lose hope and to always get specialist opinions for this type of cancer due to the rarity of this. Also, from the biopsy it is important to get genes tested, not sure if you’ve looked into this yet. Wish your husband all the best with the chemo.

  • Hi Luls

    i am very interested in your reply . I have been diagnosed with bile duct cancer mine is five centimetres.  I was diagnosed in December.  In the whole of this six months I have only seen an oncologist once. Everything else has been over the phone.  I have had four rounds of chemo . They are saying it has not shrunk and I need another four rounds. I am so fed up as I want to speak face to face with someone to discuss my prognosis.  I haven’t got anywhere as there does not  seem to be any support for us. I haven’t even got a consultant.

    How did you go about getting a second opinion as I feel I need to get one.

    Where do you live?  I live in the Wedt Midlands.

    Reading your note has given me some hope.  I look forward to your reply.

    Thank you

  • Hi Jasper, 

    I’m sincerely sorry to hear about your recent diagnosis and I don’t understand why appointments aren’t face to face anymore, it feels very in-personable.. I’m glad I have given some hope for you.

    I know with chemo they like to finish the whole course, and from memory 4 rounds was the half way point to make sure the chemo is stabilising the tumour at the least. I know mums kept the same at that point (allegedly), then the other 4 rounds we could tell it was really getting into her body as she was more fatigued, low white blood cells and hair thinning. We then had faith that if it was killing her good cells it must be killing the tumour as we kept saying.

    Everyone is entitled to a second opinion (in fact we had 3). We live in East Anglia. I had done countless weeks of research and personally found Royal Free Hospital to be the best bet for hope of surgery, as they had a surgeon specialising in Bile Duct Cancer who I contacted directly found on Top Doctors as that was his specialty. I asked if he would be happy to take a look at mums results, I sent over all the letters and asked mums local hospital upon request to send over all scans and imaging to Royal Free Hospital. All in all it took 9 months as she had to finish chemo, be off chemo a certain time period before more scans and then a lot of persistency on our end. I really believe if we was with Royal Free in the first place they would have been able to remove the tumour at the beginning. Do you have any help for someone to liaise the second opinion for you? My mum had a stroke when she was first diagnosed, has a heart problem and was depressed so she wasn’t able to go through sorting this out along with chemo on top and is why I stepped in.

    Has the onchologist/consultant said why your tumour cannot be removed? As I know the reason why they thought my mums couldn’t was due to arterial involvement. Fortunately she had no further spread of the cancer. I know how terrifying the size of 11cm was to hear and that was me as a daughter let alone my mum, I really couldn’t see any other cases that it was this size and is why I want to try and give hope to others.

    Please let me know if you have any further questions.

  • Hi Luls, thank you for your reply. I am so happy for you and your mum that you’ve managed to fight for your mum and found a Docter who actually listened. 
    unfortunately I am trying to get early scans for my husband to but oncologist is not very keen on early scans. 
    Can I ask which hospital is your mum under? 
    my husbands treatment is at QE Birmingham, we did get a second opinion but didn’t go to well either. My husband is currently on his 6 cycle of gem/cis and from the last scan few weeks ago tumour is still growing but his oncologist persists he completes his full treatment of chemotherapy.

    I was told his biopsy was tested and he don’t match any mutations. 
    I believe the genes test is a different test more intense but not available on the nhs? 
    i would appreciate if you could shed some more light in this for me as I feel so trapped and hopeless right now. 
    Thank you. 

  • Hello Amd67,

    I’m sorry to hear his tumour had grown previously on chemo. My mum was being treated at West Suffolk Hospital overseen by Adenbrookes, however we have now transferring over her care to Royal Free Hospital (so about 2 hours away from us currently). 

    My mum was negative for the FGFR2 gene which was free to test on the NHS. However she did luckily get funded somehow at The Christie Clinic in Manchester for gene testing where they send over the biopsy to America and have it tested for 100’s of genes. This would normally cost about £5k-6k without funding, privately, so we were lucky to get this done for free. The result from that is she has a mutation which she would’ve been eligible for a new drug will be coming out end of this year to treat people with this mutation for bile duct cancer. It has been approved in America already. I will have a look at my notes from the meeting and try to find the name of this new drug for people with this particular mutation.

    Let me know if you need anything else in the meantime.

  • Thanks Luls for your reply,our oncologist was hoping that christie hospital would have gone ahead with the gene testing but they didn’t. The oncologist we saw at the christe hospital was very blunt and didn’t offer us anything wasn’t even sympathetic towards the situation so we back at QE.

    if you don’t mind me asking how did they agree to do the gene testing. 
    I get so frustrated with the Docter’s who don’t explain the full story, if it wasn’t for these support groups we would all be none the wiser. 

  • Hi Amd67,

    I’m so sorry to hear that they didn’t go ahead with the gene testing. We started that around January, and were under Professor Valle who again I contacted directly from good reviews I read about him specialising in bile duct cancer. He was amazing with us in all honesty. I didn’t really no about further gene testing at that point, only about the FGFR2 gene, and it was him that mentioned this. I’m not sure if it was because we were initially going to go ahead with SIRT privately because at that point mum was told no to the operation so that was our hope for alternative treatment. Plus, we did pay for the consultation and his time on a couple of occasions rather than NHS.. again not sure if that helps at all in these scenarios?

    Yes I hate to think negatively about doctors but it’s just so sad that many of them don’t know too much about this awful cancer and I just think they should be passing care over to specialists to get appropriate fair treatment for all!