Just starting.

Hi there

I am just starting this journey. I have just recieved initial diagnosis of primary liver cancer. I am just about coming up to the surface to breathe after the initial shock. How long generally should I have to wait to see see a specialist and be told what treatments and options are available? My GP has said she has 'red flagged ' my referrals. 

I am in Northern Ireland. 

  • Hi and a very warm welcome to the online community

    I'm afraid I don't know anything about liver cancer, as I had a different type of cancer, but I do know all about the initial shock. Most people will tell you that once you know what you're facing and what the treatment is you'll feel more in control and be able to cope better.

    If you haven't seen it already this is a link to Macmillan's information on liver cancer which includes sections on how it's diagnosed and treated.

    Having to wait for tests and results is really hard so I can understand why you want to know how long it will be before you see someone. This information about cancer waiting times says "In England, an urgent referral means that you should see a specialist within 2 weeks. In Northern Ireland, the 2 week wait only applies for suspected breast cancer. Scotland, Wales and (in general) Northern Ireland don't have the 2 week time frame to see a specialist. But wherever you live, a specialist will see you as soon as possible."

    My advice would be to stay away from Google and stick to sites like this one or Cancer Research UK for information about the type of cancer you have. 

    Do come back and let us know how you get on when you see the specialist

    x

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  • Hi Latchbrook.

    Thanks for your reply. As of today I have heard nothing and wait is causing great anxiety . I want to know more ! In fact I want to know anything !! 

    I got an initial diagnosis that I had Primary Liver Cancer but more tests would have to.be done . And then nothing.

    Went back to GP who said "If you here nothing in 2 weeks call the hospital !" 

    2 weeks nearly up and silence is killing me ! My imagination is getting carried away ! 

    As I say thank you for replying. 

  • Waiting is really horrible, I know, and I hope you'll be seen soon.

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  • Hi

    It's awful waiting for appointments and tests and then waiting for results.  We're all here to support you and the Macmillan site is brilliant to ring for advice.

  • Thank you Angie. I have since found out an approximate date for my first appointment and it helps a bit . I  was given the initial diagnosis of primary liver cancer and then was told I would have to see a specialist to determine  the extent of the cancer and how it would be treated. AND THEN NOTHING !! 

    I have since discovered  the length of the waiting list and how long I may have to wait and although I know nothing more about what is going to happen it gives me something to focus on.

    I have spent 3 weeks wondering has someone actually recieved my referal ?  At least now I know someone has recieved my referal and on what date and , Covid permitting,someone will call me four and a half weeks from that date. 

    I am beginning to realise also what a valuable asset this web site is. Thank ýou again for your message 

  • Hi

    I hope things happen quickly. We on this site are all in this together. Emotionally it is an emotional roller coaster. It takes over our lives. Take care,

  • Hi I was given the diagnosis last June that I had 2 lesions on my liver. The cancer was primary. i had 2 sessions of TACE which reduces the tumours and cuts off the blood supply.When i had my first consultation the doctor mentioned the best treatment was to have a liver transplant. I was really shocked and totally unprepared. I had my treatment and went on the transplant list in October. Imagine my shock when I got a call 3 weeks later to say they had a liver for me.Everything happened so quickly after that. I had my liver transplant on 9th November and was discharged from hospital 8 days later.Feeling so good and looking forward to going back to work in a few weeks.I was very lucky to be under Kings College Hospital which is probably one of the best liver specialists in the country. I know they take  patients from all over and I know there was a patient from northern Ireland. Keep chasing things up and do ask if a liver transplant is an option. I am 66 years old and they said age does not come into the equation. Good luck.

  • I had an abnormal US last week (for unrelated reason). Found 6cm irregular mass on my liver. Have been referred urgently and am awaiting MRI. Am so worried it is going to be cancer….

  • Hi anp22.                        

    You are not alone Blue heart.I am also in a similar situation to you. Unrelated U/S last week, and multiple focal lesions were found on the liver.

    Awaiting an MRI and my mind is all over the place right now and petrified of the wrost news aswell.

  • Hi Anotherboy,

    I am sorry to hear of your diagnosis and hope you have had time to get your head around it.

    my daddy has just been told he has liver cancer but they don’t know if it has started there or in his bowel so he has been red flagged for a colonoscopy and I hope it won’t be more than 2 weeks wait.

    have you started treatment yet? 

    Michelle