Dad has terminal liver cancer- any experience please?

[KittyConCarne]

Not quite sure why I'm posting, but I'm reading alsorts on Cancer Research UK websites etc, and not getting the info I want/ think I want.

My lovely Dad is mid 70s. He was diagnosed in July 2018 with liver cancer (single tumour at 5cm) and scheduled for ablation in August 2018.

Ablation operation started and then stopped as multiple tumours discovered.
Told it was terminal at that point.

Had chemo (TACE) in September 2018 and December 2018.
CT scans after each showed tumour growth slowing so seemed positive for increasing time left.

CT scan January 2018 showed ascites (increased liquid around liver) had developed. Increased water tablets and weekly blood tests (liver & renal profiles, FBC, Coagulation test) for 1 month, and then CT scan to check ascites progress yesterday.

Yesterday Dad saw consultant after CT in the morning, and they've said the ascites hasn't decreased. Liver function is below 50%. They recommend stopping treatment now/ no further chemo. They said the chemo is affecting the healthy remaining bit of liver more than the tumour now? And that the water tablets are causing him to lose ascites liquid, but that he's losing the "good" liquid along with the "bad" ascites liquid, which is not a good thing?

Dad said he didn't want to ask them any timelines because "how long's a piece of string" lol- typical him.

But I feel like I want to know some kind of timeline- I think? Even if he wants to remain unaware, I'd rather know what time I've got to play with?
He wanted to go some places/ see some things this year, and I want to get booking but not sure how fast to act or whether I'll panic him if I say let's get some trips done/ have some fun.

Cancer research UK website says he would have been classed as:

Stage A at diagnosis in July 2018.

Stage B/ ChildPugh B at discovery of multiple tumours in August 2018, which gave prognosis of 20 months with chemo.

Stage D/ ChildPugh D in March 2019 (yesterday), which gives prognosis of under 4 months.

Do you think that final timeline could be roughly accurate?
Does anyone please have any experience?

I’m very sorry this has happened to your family.

My fil had liver cancer. He also stopped treatment as the tumour had spread elsewhere.

I’m sorry to have to tell you that in my fil case it was very quick. He was diagnosed in April and died end of sept.

The last time we got out together was July
After that he was too poorly.

I wish I had more positive story but not everyone is the same.

Very sorry to hear about your father My dad had inoperable secondary liver cancer. He went from being apparently well to dead in 10 days (no prior diagnosis) but one thing his doctors said to us was that it's possible to keep going with only a small amount of your liver working - he was down to about 10%. So hopefully you have a little time.

My FIL also has secondary liver cancer and though I don't know exactly what is happening, it is inoperable and terminal and he is still alive 3 years after the terminal diagnosis. He's on a trial for targeted chemo (I understand they do a nuclear scan then inject the chemo directly into the tumor ) Too soon to say if it's working.

So sorry to hear about your dad. My Dad had lung cancer, we think he’d had it a while before being diagnosed. He was terminal and we also wanted a rough guide. After many scares, cancelled holidays, he was at deaths door quite a few times before he finally went after 2 years. He deteriorated really rapidly in his last week of life.

If there are places you want to go with him, get it done ASAP. I am sorry op. My grandad died of liver cancer and it did progress very quickly. I would hazard a guess that the prognosis you looked up reasonable unfortunately. Particularly as at the end, although he will be alive, he won’t be up to doing stuff.

I am so sorry to read of your lovely Dad's illness. I think my advice would be "sooner rather than later". My mum had oesophagael cancer that turned out to be inoperable due to the spread to her liver. Once it reached the liver, the decline was very very quick. I have a picture of her looking wonderful, full of life and sipping champagne on 8 December. She died on 25 Jan (this was 15 years ago, so not recent). The problem is that the liver is such a vital organ that decline can be very quick and take you by surprise. I'd do what you can as soon as you can if I am honest...but I hope you have far more time than you expect.

Wishing you love and light

He’ll be entitled to a benefit for people who are terminal, I think it’s about £100 a week, non means tested. Ask McMillan about it. It could go towards extra care etc. I would also start looking at his sleeping arrangements. Will he be ok if he becomes bed bound? Just before my Dad died we were looking into putting a hospital bed in the living room. Easier to care for him there and he would feel less isolated.

Greatbigwhoooo thank you & I'm sorry for your Dad

Yes, it all seems really surreal, as he's pretty much his normal overbearing self lol, but although he's a large man he looks smaller somehow- suddenly seems old when I never thought of him as elderly, seems frailer somehow.

Need to pull myself together. Went to Dad's yesterday for a while, and then onto my brother's to break the news to him. Been looking up opening dates for some local places- we're quite rural so some places that I know would be a lovely afternoon don't open til the Easter- irritating lol.

I'm lucky that my parents are the most practical planning/ forward-thinking individuals, so I've known for the past 5 or 6 years that there is a file in their cabinet which contains all their paperwork for wills/ pre-paid funeral plans/ pre-paid plots etc. I don't think Dad would have written notes on personal preferences for music/ poems etc (more the money side so it was all sorted for whoever had to deal with whoever), so I still need to ask him those questions, but I'm grateful that I think he's blunt/ pragmatic enough that he'll be ok with a conversation like that.

Thank you for your advice- I really appreciate you taking the time to write x

I feel really down today- not much point writing this post, but it feels slightly therapeutic. The other people in the know total 4- Mum/ Bruv/ my partner/ my friend- Mum & Bruv aren't ready or able to have conversation yet, my other half is great but works long hours and deals with sad situations by cracking humour which I'm not ready for right now lol, and I don't want to keep dumping my emotions on my friend- she has her own family & issues to be getting on with.

I keep thinking of all the things he's meant to be doing this coming Winter- birth of my SDD1's 1st baby- his 1st great-grandchild/ our 1st grandchild, and my DD2's 18th which we always make big celebrations of.

He was meant to be around for ages yet. I'm not ready. He was meant to walk me down the aisle when we finally got round to it lol. We could quickly sort a registry office do quite easily, but I don't to waste time doing that when I want to be doing stuff with just him. Being with just him and talking and laughing.

How many times have I inwardly groaned when he's turned up for a 4 hour tea session when I just wanted to slob out with the little ones & watch Disney movies. Now there's only limited time, but I want eternal Saturday afternoons with my Dad turning up-announced- I want my younger girls to have a childhood with him like my SDC had. I feel angry at the years I've wasted not asking him every story of his life. I'm feeling snappy & annoyed but not at anyone, just the unfairness of it all.

thinkingcapon thank you and I'm sorry for your loss

Dad had the first few appointments by himself as he wanted, but came away having not absorbed info/ hadn't asked the questions he wanted to.
So he agreed for me to come to his next consultant appointment (as a note-taker really), but then he had the ablation surgery which was halted at the start due to discovery of further tumours. The surgeon came to speak to him after the operation and told him it was terminal at that point.

So then Dad changed his mind and said he didn't need me to come to any consultant appointments/ he'd rather deal with it himself.
I respect his decision, but he still comes home and talks over the appointment/ says he doesn't quite know what a certain thing meant, or wishes he'd asked another question at the time. I've offers numerous times to accompany him anyway- blatantly reassured him that I want to support him/ I'm not going to get upset at hearing stuff/ I can dettach myself from the emotional side of knowing who the patient they're talking about is in order to deal with note-taking/ question prompting, but he's stoic in his choice/ wants to protect me from hearing it in cold clinical terms.

I've suggested he take a dictaphone so he has a recording of the conversations, or ask the consultant to put a bullet-point summary in a letter afterwards to him, but he says that a dictaphone would make him look like he wasn't capable of remembering stuff, and he wouldn't want to waste the consultants valuable time by asking him to write summary letters out.
He's stubborn my Dad lol.

Thank you for your message and advice

I found the MacMillan phone line great for offloading and asking medical questions. They were a real lifeline to me when I wanted to say stuff I couldn't to anyone I knew. It was such a relief to speak to people who understood and weren't upset if I let it all out. Also the Maggie centre was fantastic with my dm and v skilled at getting her to talk a bit. Had to get her there under pretext it was for info only though.
One thing that helped me a bit was to really try to just accept however I felt everyday. Let it wash through me. It's such a rollercoaster of feeling I think you have to consciously remember that these are big exhausting emotions and to really cut yourself some slack. And be patient with all the people around you who don't understand.

DobbyIsAFreeElf thanks for your post.
My Dad's main consultant for past 8 years (dealing with Hep/ cirrhosis/ throat varices/ blood pressure etc) has been at our local large hospital.

When he was diagnosed with the liver cancer, his consultant said he would have that bit of his medical issues dealt with at another hospital quite a way away, but would continue to see his main consultant at local hospital for all his other issues.

So Dad's been travelling to this other hospital for his ablation surgery/ his TACE treatments/ his CT scans/ his cancer consultants.
The consultant meeting on Friday was with these people at this other hospital. They said recommend chemo stops/ they'll transfer him back to his original hospital/ wished him well & good bye.

So now we're hoping his original consultant will receive the cancer consultant update this week, and schedule an appointment for Dad to go in & discuss things with him. I don't know if his original consultant will then suggest ascitic drain, or whether that would only have been offered at the other hospital/ they didn't do so on Friday, so not an option?

Unfortunately, when Dad went in for his first operation (ablation attempt), he spent the morning waiting on a ward next to a man who was in for an infected ascitic drain issue. The man was in a lot of discomfort & pain, but him & Dad talked a fair bit. Dad came home the next day saying that an ascitic drain is not something that he ever wants to have done due to what this man said/ was enduring.

Pointed out at the time, that the man had an infection issue/ not a run-of-the-mill ascitic drain, so not to go discounting possible treatments based on such info, but he was adamant. This was back in August 2018, but I'm fairly confident my Dad will stick with this uneducated decision.

I realise you're not a nurse, but I'm assuming the ascitic drain purpose is to relieve the pressure on the internal organs & therefore prolong life.
If he chooses to not accept a drain if it becomes a possibility, then I'm assuming the end quite bluntly would be quicker?

greenwhitefrog thank you for your message, and I'm sorry for the loss of your Dad

I think that's very wise advice- start doing some things now, and then if there's time for other stuff it'll be a bonus.
Your thoughts on it being a rapid decline at this stage seem to be echoed by several others on this thread, so I'm scared but grateful that I've got the vague information I wanted confirmed.

Now I just need to get both my mum & brother to understand that time is of the essence- because Dad seems healthy and has told them both he doesn't want to hear a prognosis, they are both in denial/ talking about it being in a 18 mths/ couple of year's time. They haven't been following/ researching Dad's treatment stage-by-stage as I have, so have no knowledge/ not quite ready to believe it yet- perhaps in a few days they'll come to terms with what I'm telling them.

I'm torn telling them we only have 3/4 months now that all treatment has stopped at Stage D if that's an exaggeration on my part- I don't want to scare them or upset them unnecessarily, but I'm 99% sure that I'm reading the website info correctly/ hearing from similar personal experiences.
Even if I'm wrong, and it's 6/9 months, I want them to crack on with creating memories asap just in case.

I'm sure it's not a couple of years- nothing I've read based on his exact issues suggests he's going to make it that long, but they are not thinking it's soon based on Dad's blasé attitude and his still mostly normal functioning lifestyle.

madroid thank you and I'm sorry about your DM

I hadn't realised that Macmillan had a helpline that relatives could use too- thank you, I'll have a look on their website later.

Maggie's website seems to show they're in the process of building/ funding a Maggie's service at the same hospital that Dad has just been discharged from. Will come too late for him, but the website seems to have some useful info/ potential online help, so thank you for that too.

Your advice sounds good- it already feels like a rollercoaster of emotions just this weekend- driving and a song sets me off crying/ washing up & I feel irrationally angry. I thought I'd started processing/ grieving for what could have been back in August/ September 2018 when we were told it was terminal- thought I was being pragmatic & sensible & coping with the idea that he'd be going sooner than I hoped, but this feels so intense right now that terminal actually flipping means what it says/ that this is actually happening/ like a slow-motion train crash/ and I'm so unprepared and shocked and frustrated- as though it's the first time I've found out all over again. Rah!

I'm sorry you have both received this news.
My mum was diagnosed with late stage bowel cancer. She had to have an immediate colostomy but not offered any chemo /radiotherapy . I was with her when she had the diagnosis and whilst she did not want to hear she gave permission for them to inform me. I was told around 3 months ( they are vague ) She died after 11 weeks.

OP I think hard as it is you do need to have the conversations with your family about the possible short time frame, nobody wants to accept it, I certainly didn't and my dad was still putting on a positive outlook of getting better up until the last week (despite by then not being able to eat or drink). That positivity was helpful in some ways but meant it was even harder to have the conversations about funerals etc. The fact that my mum/siblings all knew what was happening meant that we could support each other which was very helpful.

My dad had the ascites draining procedure and it was fine (as these things go), he had some discomfort at the time of the procedure but meant he was more comfortable generally as the ascites build up makes it harder to eat/drink/move around.

VictoriaBun I'm so sorry about your Mum
Thank you for sharing your experience & the timeline xx

greenwhitefrog thanks again- Dad came round to tell me how the consultant meeting went on Friday afternoon.

I spoke with my Mum by phone that night, where she said that it was sad news and that my brother & I are going to need to support her physically when the time comes to be looking after Dad at home in the next couple of years. And that she'll happily contribute towards a trip to the Edinburgh Tattoo in August.

I gently told her that I'm pretty sure we're talking months/ not going to make it to August. She said that it doesn't sound imminent from the way my Dad is talking, so not to go panicking and Dad's next consultant appointment isn't until July, so that can't be true.
I pointed out that Dad's standard consultant won't have received the discharge/ chemo stopping info from the cancer consultant yet as it had only occurred a few hours previously. And that I imagine his standard consultant will be rescheduling/ bringing forward Dad's appointment once he receives the news next week. She said she disagreed/ definetely no need to be encouraging Dad to go on trips this side of Easter as he's just really tired at the moment/ more grumpy than usual with her, so she could do without him being antagonised.

I visited their house the next day (yesterday), where Dad was napping on the sofa, but awoke soon after I arrived and was chatty. Talked about the consultant meeting a bit more- asked him if they had mentioned a drug called Sorafenib that I'd read about the previous night- he said it was mentioned but they told him his liver is not working well enough to trial/ use any targeted cancer drugs like that. Asked my Dad's permission to tell my brother the latest news (they have an on/off strained relationship).
Dad agreed, then he shut the conversation down as my Mum re-entered the room.

Spoke to Mum alone before I left and asked her if she was ok/ told her to pop in as usual anytime if she wanted to talk. She was just very angry about a seemingly petty argument they'd had/ re-iterated that she feels we should just wait to see what the July appointment says and go from there- perhaps we should do Christmas Dinner at mine to minimise stress on Dad hosting at theirs...etc...I think I need to give her some more time to process the info- if she's not ready then she's not.

Went from theirs to my bachelor brother's house, to be met by my brother nursing a hangover. Explained very simply that Dad's consultant has stopped all treatment from this point, and so it will now shift to "end of life care" and making Dad comfortable. I said that Dad still refuses to ask for a prognosis, but I have researched and determined that we're looking at possibly 4 months. My brother said it can't possibly be that soon- Dad still looks fine/ he's having his normal arguments with him/ Dad would have been given hospice details if it was going to be that quick.
I said that I think he's going to get more info in the next few weeks once his original consultant is made aware.

I asked my brother if he could start thinking about any local trips he wouldn't mind taking Dad on with me/ spend some time together. He said he's snowed under with work/ can't take time off unless Dad tells him it's definitely going to be in next few months/ August onwards would be better for trips as work starts to die down then.
I told my brother I'd nip back round later in the week to talk more, which he said I could do but obviously we'd already discussed/ realised that he's too busy right now to be doing trips.

I'm really hoping they're both in denial/ will get their heads round it over the next few weeks.

greenwhitefrog Oh I'm really sorry- that was a proper detailed frustrated message- didn't realise til I'd pressed post.
Thank you for the ascitic drain information- I'm definitely going to re-discuss Dad's concerns with him/ encourage him to talk to specialist etc if he does get offered that treatment.
Thank you for your help xx

My father had a drain. Made him feel far better

Luscinia thank you and I'm so sorry for your friend - you sound as though you were a wonderful friend to her.
Yes, good idea about insurance- we definitely won't be leaving the UK, but I won't scrimp if we book anything up to Scotland.
And yes, I plan on making memories even if it ends up just being my youngest making him laugh at home/ at local days out, or just whiling the hours away chatting together- I intend to enjoy just "being" with him while I can.

thebeesknees123 thank you and I'm sorry about your father
Other posters' experience of the drain sound positive/ worthwhile too, so I intend to really encourage my Dad to consider if it becomes an option.
Thank you for posting.

Oh. This is very sad.

My mil was also in denial but after July my fil was too ill to do much at all. Bearing in mind he was positive and normal in April I feel your attitude that sooner rather than later is a sen single approach and of course any longer would be wonderful

Sensible!

Sorry you are goi g through this.

Make sure you get a palliative care referral ASAP - they can help with pain co tell, drainage etc and if you can be referred to a hospice do it now, they don't just deal with the very end, there will be therapy, and other practical help you can all get from a hospice.

Having lost my own dad and having done a bit of forward thinking can I suggest,

Taking photos and videos of random things with him. I wish we had a recording of my dad telling my mum off for example.

Dad has already planned his funeral, readings, hymns and eulogy's bless him.

Please bare in mind that although you may want to do loads of things with him Before he dies, he may just not be up to it, want things to be normal etc.

It's goi g to be tough so be kind to each other, talk about it and take time for yourself too.

I’m very sorry to hear about your Dad 🌷

Sadly our family is all too familiar with cancer. The prognosis has rarely been anything close to the actuality...but each time you still want to know. Human nature I suppose.

I think you’re doing the right thing, plan whatever you can, as soon as you can. Right this minute is the only time ANY of us can be certain of.

I think for your own well being you need to stop trying to sort this out for your Mum & Brother, let them do their own thing.

This is about your Dad, not your Mum, if you and your Dad want to go out for the day or away, then just do it. If he’s more tired or grumpy at home 🤷🏻‍♀️
so long as he enjoys it, do it. It’s your only opportunity to do things with your Dad, make the most of it AND you’ll really resent your mum if you feel she stopped you doing stuff with your Dad.

Don’t forget to look after yourself x