Untreatable bile duct cancer

Hello, I joined this group about 3 months ago, when I was first diagnosed with "inoperable untreatable" BDC. In this 3 months I have had no support, and no contact at all, except for the Macmillan CAB welfare advisors and today's message from "Tom". No offer of palliative treatment, no future appointment for another scan to check the rate of growth of the cancer. Nothing, and, even bearing in mind the Covid crisis, I feel like I have been thrown to the lions. 
I am sure I am not the only one in this situation? Is this all there is? Sitting around for months in God's waiting room?

  • Hi. 
    I was diagnosed with inoperable BDC in April 2020. 7 years after having gallbladder cancer and my liver resected. 

    I have had radiotherapy to help with pain and a CT scan in 6/8 weeks. No appointment yet. I have an end of life nurse ( through my go) to help with the pain. 

    Chase your GP and Oncology Department. They shouldn’t just leave you ! 

    Becky 

  • Hello oldchinahand, I too have untreatable BDC but am getting regular scans and also phone calls from my GP, Oncologist and Specialist Nurse. They help me with control of symptoms like bad itching from jaundice. Try contacting your GP, Oncologist and l Specialist Nurse and ask for support and follow up. If they can't support you try your Palliative Care Team.Good luck getting support and take care, best wishes, Cankerline

  • Thank you both for your responses. They have highlighted the situation that I am in and persuaded me, even more, that I am in a postcode lottery. I am still in limbo, although I've still no contact with an oncologist, I have now had contact with my GP and a hospice doctor/nurse. This has resulted in some changes to my medication and a bit less discomfort. I've been told that I cannot have another scan to guage the progress of the cancer as it is "not essential" and that no follow up treatments will be considered until I have more severe symptoms. That tells me that no action will be taken until it's too late!
    I am now waiting for a visit from a specialist nurse, who I hope will advise me further and, in the meantime, I have asked for a referral to The Royal Free Hospital in the hope that I can get to see a BDC consultant and get a true, unembellished, picture of where I stand. I hear of others, like yourselves, who have a treatment plan and dedicated specialists and wonder if my situation is being adversely affected by my local NHS Trust policies and/or ageism, or am I past the point of no return and they're not telling me? 
    Thanks and keep in touch.

  • Hi again.  I hope your Specialist Nurse is able to help you. It is worth pushing to receive care. Take care and a big hug.

  • Hi Oldchinahand, I wondered if you know about Personal Independence Payments? Macmillan told me on the phone how to get them with the help of my Oncologist. It helps towards heating bills and towards nice things like going out for coffee with my daughters.

  • Thank you Cankerline. Yes, I have been guided through all the various claims by the Macmillan financial advisor, some successful, some not. TBH, it's not financial support that I need. I need moral support, good and honest assessment and effective pain relief. I have no faith in my local health centre and I have heard nothing more from my GP about the proposed scan or the referral, which can only, I am told, be done by a Consultant. So my referral is being handled by a third party and I doubt if it will ever get through to the Royal Free. The most effective support I am getting is from the palliative care nurses from our local hospice charity, who have visited once and call weekly. The NHS seem to be hogtied by the virus precautions and budget restraints. In the meantime I have stomach pain 24/7 and no relief in sight.

  • Hi Oldchinahand, I am so sorry that you have continuous pain. I get pain sometimes but can get rid of it with painkillers. I hope your palliative care team can help. Take care, Cankerline