Liver cancer

Hi my name is huw, I have cancer of the liver & on the transplant list. Was wondering if anyone is in the same predicament as myself . Although I have family & good friends it's still not the same as chatting to someone who truly understands.

Many thanks

Huw

Hi all,

Well now reached end if 5th month on transplant list and the waiting is getting harder.

Start to ask yourself if it will happen, constantly checking my phone,sleep getting harder,worrying about the effect it's having on family the list goes on.

Strangely feel well in body,it's more the mind.HELP

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14 Replies

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  • Hi

    My husband was on the transplant list due to end stage liver disease.

    What hadn,t shown up was a host of liver tumours,which, had they been found would have excluded him from a transplant.

    He is now 5 plus years post transplant and no recurrence.

    Which hospital r u attending?

  • Hi, I am attending addenbrookes hospital Cambridge, I have 2 tumours which have had treatment to slow down there growth. Very happy your husband is doing so well

  • Hi huw

    I also have liver cancer but am not on the transplant list.

    I have had a few surgeries but am currently inoperable. I'm also a patient at Addenbrookes :)

  • Am sorry to hear your inoperable, are you hoping to go on the transplant list or is this not an option

  • Mine has already spread outside the liver so transplant not an option.

    I'm fit and well though. I have a few small lesions in my liver. They are too spread out to be removed but they don't physically affect me.

    I live a totally normal life apart from having scans every 6 months.

    Good luck with your transplant.I hope you don't have to wait too long

    My surgeon is a transplant surgeon there,if he does your transplant you will be in excellent hands xx

  • Well good luck hope all goes well and u don't wait 2 long.

    Keep us informed

  • How big were they? How much did they shrink? How long ago was that? Sorry for all the questions

  • Why is it they say some are inoperable yet those who they find tumours in accidentally such as when doing transplant and as above live five years plus, I think everyone should get second and third opinions where transplant is concerned, as they tell lots they are inoperable but then they have surgery and live a long happy time

  • Hi huw , I also have liver cancer HCC tumours just had tace treatment ,but not on the transplant list got to wait 6mths just had CT scan to see it's worked at queen Elizabeth Birmingham

  • Hi,I've had TAE treatment to slow down the tumours I've got.But it's not a cure only treatment . I've also had abilation treatment which unfortunately was not completely successful .as for CT scans I've had those but MRI is the road my clinic take.

  • These are the NHS criteria for transplant .

    A liver transplant may be suitable for you if:

    you only have a single tumour less than 5cm (50mm) in diameter

    you have three or fewer small tumours, each less than 3cm (30mm)

    you have responded exceptionally well to other treatments, with no evidence of tumour growth for six months

    If you have multiple tumours or a tumour larger than 5cm, the risk of the cancer returning is usually so high that a liver transplant will be of no benefit.

  • I was diagnosed with HCC in September 2016. 2 tumours measuring 4cm and was treated at Aintree Hospital with TACE to shrink the tumours whilst waiting for transplant assessment at Queen Elizabeth Hospital Birmingham.

    On the 29 Feb 2017 I was placed on the transplant list. I only waited 7 days for a transplant and was in hospital for 7 days. The main reason I only waited 7 days was because I have the rare blood group AB POS.

    It takes a long time to recover but well worth it, you are well looked after and monitored throughout your recovery. It is over 12 mths since my transplant and feeling fantastic and living my life to the full - Angling, dog walking, photography etc etc.

    I am 66 yrs old now feeling like a 46 yr old. Good luck, I'm sure you won't wait long and if you do, you will be well looked after in the meantime.

  • Hi, I had the same thoughts as you.

    I had two small tumours in the liver. I'm at Addenbrookes. Prior to having a tx, they managed me by Radio frequency ablution, and Trans arterial embolisation. After nine months on the tx waiting list I had a new liver.

    I hope that you do not have to wait long. The transplant team were fantastic. I spent a total of 14 days in the ward.

    For the first three months I was having a weekly appointments, now I visit every three months.

    Good luck

  • Hi,thanks for the reply

    Your condition & treatments almost mirror my own even down to the hospital.

    The clinics are being absolutely fantastic ,the consultants are very open & honest but to be truthful my two nurses who I've been with for the past 2 years are the ones I turn to when I need advice or feeling nervous they really are so so good.

    Pleased your well on the road to recovery and it gives me a lot of positive thoughts.

    BW

    Huw

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