Liver Tumour - Waiting to find out if Benign or Malignant

Good Afternoon everyone,

I had really bad stomach pain just after xmas, radiated up to my shoulders etc, gallbladder disease runs in the family so i thought it eas likely to be that. I have private health insuracne and got a GP referral to the gastro consultant (first appointment early March 22) who also thought it was likely my gallbladder. He got bloods done, and arranged an ulstrasound and CT with contrast. I caught covid so there was then a delay in getting the scans, just before Easter iw as told that i did have small stones in the GB but also what seemed to be a large cyst on my liver, so he wanted another set of bloods (liver tumour markers) and an MRI. Got theMRI 6th May and a call a couple of days later to tell me that it was more complex than a cyst, possibly a tumour - 9CM and he was now red flagging me (2WW) back into the NHS for further bloods, another CT, an MRI with primovist and my case would be discussed by the radiology team and then the multi discplinary liver team. I have had to wait 5 weeks for the MRI rather than 2 and only had it yesterday, the MDM team can't/won't make a diagnosis until they see the results of the MRI. I have been told its probably benign but we aren't sure, and I have also been told due to its size even if its benign I may need liver resection or possibly even liver transplant. 

I have emailed the consultant to day to get an diea of the timeline for MRI results and the MDM review.... I am so fed up waiting and I know that even with thisa MRI they still may not be in a position to confirm benign/malignant. I am trying to keep busy, work know whats going on but my three kids (15,13,11) don't...  I had managed to set it all aside for the last few weeks but the MRI yesterday has opened it all up again and I just feel sick all the time. 

 

 

  • Hello scotsgirlni

    I'm sorry to hear about all that you're dealing with at the moment. I think that most of our members will understand that this period of waiting and uncertainty can be particularly difficult. 

    It might help you to know that primary liver cancer is uncommon in the UK so the statistics are hopefully in your favour. However, if you're still facing possible surgery and maybe even a transplant that is still a daunting possibility. 

    There's lots of help, support, and information available from the British Liver Trust which is an excellent organisation. Alternatively, if you'd like to chat with our team of nurses you're welcome to call them on 0808 800 4040, Monday to Friday 9 am to 5 pm. I'm sure they will be happy to listen and offer any advice and support that they can. 

    I do hope that the MDT are able to discuss your case at the next meeting and that they can give you some firmer answers, along with some reassurance about the next steps. Keep in touch and let us know how you're getting on. 

    Best wishes, 
    Jenn
    Cancer Chat moderator 

  • Just thought I'd come on and update. So my case was discussed again at the MDT on Friday and they are still unsure whats going on in my liver :( the most recent MRI with primovist didn't give them anymore information. So they now want a biopsy of the liver tumour. It either a benign focal nodular hyperplasia or fibrolamellar HCC which is really rare (1 in 5 million), so chances are its fnh but its still hanging over me. We are off on holiday this weekend so i am trying to put it out of my mind and deal with it when we come back.

  • Thought I'd do another update just in case anyone looks for information on this in the future. I had liver a biopsy on 22nd July and the consultant confirmed its benign :) I am so so pleased. So the tumour is focal nodualr hyperplasia, unsure what they are going to do next - either observe or potentially remove because i do have symptoms although they cant tell if its from mygallbladder or the tumour. Anyway its good news

  • What wonderful news for you (all relative of course). Our daughter has gone through a very similar process to you it seems. F ibrolamellar was also questioned for a long time. We sought a second opinion at royal free hospital (amazing staff btw) and she had a15cm x 10cm tumour and her gallbladder removed in june. She is currently recovering with us. She is a different girl! Her tumours (she still has over a dozen smaller ones in her right side liver) have now been confirned as benign. More than likely caused by prolonged contraceptive pill and hormone treatment Never give up hope, you will get through this. Fight for what YOU want to happen not always what the clinicians think is right. I wish you all the luck in the world with your treatment and recovery.