Worried anxious and frightened

[CatELOgreen]

59 year old man recently diagnosed with suspected liver cancer. I’m anxious, worried and frightened, not sleeping and unsure how to deal with this news. I’ve joined the forum as want to read about others experiences of dealing with this and in time share my own experiences. Thank you in advance

[AyrshireK]

Hello there, welcome to the forum. Sorry to hear about your recent possible diagnosis. If it would help the British Liver Trust has a branch of the trust dealing specifically with liver cancer and you can find further information at :- livercanceruk.org/

If it would help you to chat things over they also have a telephone helpline staffed by qualified liver nurses.

Nurse-led helpline

If you or someone you love has been affected by liver disease or liver cancer, or you are worried about your liver health, our free helpline is here for you.

Call 0800 652 7330 between 9am and 3pm Monday to Friday (excluding bank holidays) or email [e-mail].

Calls and emails are always answered by a specialist nurse.

I wish you all the very best going forward with the rest of your tests and treatment. Hopefully other members with liver cancer treatment experiences will pop on soon to give you loads of words of encouragement.

Katie

[NieceByMarriage]

I'm sorry you have this possible diagnosis to contend with, and very much hope that it turns out not to be cancer. I have no direct personal experience of liver cancer but I have several close friends and relatives who are dealing with cancer.

Of course it is best to try not to worry until you know exactly what you are dealing with but that is easier said than done. I think you are very wise to have joined this forum and to be trying to find out more about what you might have to deal with. From what people have told me, if there is a cancer diagnosis then things can start moving quite fast. Medics can bombard you with information and treatment choices. On the one hand they tell you that you must take enough time to consider what they have said and then make your decision but on the other it seems to me they quite often push you for your decision. Time can be of the essence, of course, but a lot of that depends on how early (or late) the cancer has been discovered.

If you are the type of person who likes to Google and research then I think that makes sense because you will have some idea of the questions you may be faced with and may have had time to form some very basic views on what your answers might be, of course guided by the medics. The danger of doing advance research is that you can scare yourself silly. If you are not the type of person who likes to Google then I would encourage you to ask all the questions you need to once you have a diagnosis and do not allow yourself to get pushed in a rush down any particular treatment path if it is clear you have options and you want to consider those options.

[purplecatlady1]

Hi, sorry that you find yourself in this worrying situation. You say that it is suspected liver cancer, are you waiting for test / biopsy results? I know that it is very hard to cope with the waiting for results, fearing the worst and trying to cope.

I had a 9 week wait for results after a liver resection to remove a large tumour from my liver, the doctors could not tell from my ct scan and mri whether it was benign or malignant, so they wanted to remove it anyway. I tried to keep as busy as possible and tried to not think too far ahead, which at times was easier said than done.

I was lucky that when I finally got my results, my tumour was a benign one.

I hope that you get results / treatment plan soon, I think you feel a bit more in control once you know actually what is happening.

Good luck

Annie

[CatELOgreen]

Thank you Katie, NieceByMarriage and Annie for your kind and sound advice. Plenty of information you’ve provided for me to think on and consider, I know I’ve got to be patient and take one day at a time but as you’ve said this is easier said than done. At this stage the cancer is suspected as awaiting a PET CT scan to find out more about what’s going on before deciding on a treatment plan. Your advice has given me some hope and l know I’ve got to stay positive and will post again when I find out more.

Thanks again

Martin

[Orangutan_lover]

Hello, I know it’s easy to say don’t worry and don’t google but it is hard not to do those things, cause it’s happening to you so you try to find out all the if’s and but’s to try and pre empty as much as you can , cause I have done it , but please stay positive it is suspected at this stage not confirmed, my thoughts are with you take care

[CatCrumble]

Hello

I’m in a similar position to you right now. Because of my age (40) and no sign of liver disease they thought the mass is benign but this is only a guess before I had my scans. I have an appointment to get my results tomorrow. Like you I’m scared & very worried. Your mind goes to all the worst options as it tries to make sense of what it doesn’t yet know. I’ve had a look on google etc but it wasn’t really helpful at this stage for me. Instead I’m focusing on staying in the moment as this is really all anybody has. If I find my mind wondering I do a couple of exercises advised by Dr Julie.

One is where you write your worry at the top of the page then divide the page in two. One side you put all the reasons (they have to be facts not feelings) why the statement at the top of the page is true. Then, kind of like a lawyer would, you try to find evidence to disprove those facts. The aim is to see that feeling aren’t facts & they only affect you if you give weight to them. You can’t control how you feel but you can decide how much power you give them.

The second was writing your thought in the center of the page then writing any thoughts or feeling that pop in your head around them. Once you’re done, you look at them and analyse which is a feeling, catastrophising, guilt, not true etc. the aim is to get a little perspective on your feelings when you’re feeling overwhelmed by them.

Both are helping me.

I guess I’m trying to say instead of worrying or trying to preempt a diagnosis I decided to work on improving how I deal with anxiety & uncertainty as that is something I can do to help myself cope.

Good luck.

[Mick1414]

Hi,

I have read your concerns etc and all the replies to you which sounds like good advice.

I can realte that I have liver cancer of 3.7 center meters long. I had 3 biopsies after numerours CT scans and MRI scanx. The first biopsy the could not get to the liver cancer, but on the other two biopsies they managed to get the samples they needed to be looked at in the labs.

Soon after I had an appointment with my liver consultant who was very nice and understanding. He broke the news to me and had time to answer any questions I may have or my wife had. The next step was to go for an operation assessment then for a fitness test, which I failed. so the only option was for me to be put forward for radiotherapy. I have an appointment at Oncology this coming Wednesday.

My advice is to take each day as it comes and speak to your family and friends as they are a good help. If you feel you need further advice or take your concerns, get in touch with the Liver Nurses here. I have contact with the local Liver Nurses where I live (Bristol), which I use as they understand what patients go through, have good answers, and are very good at putting your mind at ease.

Please do not use Google to seek help or advice as this can mess with your mind. Also not give you sound advice you maybe looking for.

Feel free to contact me on here and I will be there for you. I am 72 years young and feel fine about my next course of treatment. Good luck from Mick.

[CatELOgreen]

Thank you Orangutan_lover, CatCrumble and Mick1414 for your kind and sound advice today which I shall take on board. As you’ve said the main thing is trying to take one day at a time and dealing with the uncertainty and anxiety which isn’t easy.

To CatCrumble I hope your appointment tomorrow goes well and you receive good news and to Mick1414 I hope your appointment at Oncology goes well on Wednesday too.

Take care and best wishes

Martin

[BritishLiverTrust14 Moderator]

Dear CatELOgreen,

If you are in the UK and would find it useful to talk things over, our nurse-led helpline is open Monday to Friday from 9am to 3pm on 0800 652 7330 (excluding bank holidays) . We also facilitate a range of virtual support groups for people living with a liver condition (and their families and carers). If you are in the UK and would find it helpful to speak to others with shared experience, you can register to join a group here:

britishlivertrust.org.uk/vi...

Best wishes,

British Liver Trust

[CatELOgreen in reply to BritishLiverTrust14]

Hello first of all apologies as I meant to post a couple of weeks ago. I’ve just reread all the helpful posts (thanks everyone) since my first post and wasn’t sure which was the best one to reply to (so chose this, the last one).

To try and summarise without waffling too much, the suspected cancer diagnosis was because an MRI scan showed a 5.3cm lesion on my liver. At that time I was full of infection and the scans also showed inflammation which was confirmed by the liver specialists at Birmingham Hospital. I had a subsequent PET scan which also showed inflammation. The last MRI scan at the end of October showed the liver lesion had reduced to 2.9cm. The Hospital Trust where I had the scans believe the previous larger size lesion was due to inflammation rather than cancer which the liver specialists also believe.

I’ve got a follow up MRI scan in three months time as the Hospital want to check up on the size of the lesion. Currently feel relieved and lucky but not taking anything for granted and know I’m not out of the woods yet. I’ve started exercising more and changed my diet, now eat porridge for breakfast, lots more fruit than previously, nuts instead of crisps and green tea instead of fizzy drinks, especially Lucozade.

I thought I’d post this in case anyone else is going through something similar. Lesion sizes can and do reduce especially, as in my case the first scans were when I was full of infection.

Thanks again for your replies and best wishes to you all too