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?

[VioletCharlotte]

No experience at all, but I saw your thread title and didn't want to just scroll past. I'm so sorry you're going through this x

[Singlenotsingle]

Is there no possibility of a transplant? Or has it spread?

[KittyConCarne]

Thank you VioletCharlotte
He is an amazing man- I was so so lucky to have him for my father.
I am beyond devastated.
But a good friend I've confided in (Dad doesn't want people knowing, but I needed to talk/ chosen someone I know would never say a word), has told me I need to be stronger than I've ever been before and help my Dad cope first & foremost- she said the best last gift I can give him is to know that he can talk all his fears out with me without worrying about my reaction- make it clear that I'll be just fine in the world afterwards because he raised me just right as a strong/ confident person.
She said one of the worst things for a dying parent is witnessing the trauma in their children dealing with it all, and that I need to spare him that as much as possible- to make his last few months as stress-free on him as possible, and do my grieving out of sight.
So I feel like I want to try and gain some control/ knowledge about timelines and get some trips sorted, and give him as much time and love and laughter as I can squeeze in.

[KittyConCarne]

Singlenotsingle thanks for replying.
It hasn't spread as far as we're aware. He does have a "mass" on his kidney that they've been aware of since early 2018, but the consultant decision was to concentrate on the aggressive liver cancer first, and if they could stabilise that, then they would have done a kidney needle biopsy. His kidney function tests have been very good all along, so there's been no sign of concern to get that checked out (which I thought was odd, but hey-ho).

I wrongly thought you could opt for a liver transplant or resection (removal) of the tumour bit of liver, but turns out you can only have that if it's discovered in the early stages. His was discovered too late, so only options were ablation (laser/ heat treatment to destroy the tumour) which he went in to have done and then they realised there were multiple too large tumours to use that method.

So then, he was left with chemo (TACE- which is a targeted chemo drug pumped into just the liver to slow the tumour growth), but as of yesterday they've said that this method is now causing side-effects which will shorten his life-expectancy, so they have to stop that now as well.

[anniehm]

I have a friend in this position except his surgeon had twice gone in and removed tumours but he couldn't have more chemo. He's not been given a number but was told to enjoy his life but have his affairs in order as they cannot guarantee if they they operate again when they regrow and the end can be quite quick. He has booked a holiday in May but is reluctant to think beyond the summer as I think he has a feeling about it.

Sorry you are in this situation , McMillan might be able to help more but it's variable

[twinklebee]

As far as timelines go, in my experience they're reluctant to say. My mum was desperate to know (unlike your lovely dad!) and they told her "months". We took this to mean less than a year but she survived longer than that and every time we went back they said they didn't know and they thought months was as close as they could tell us. In the end my mum stopped asking and found it distressing when she lived past her expected time as she felt as though she was just "waiting". Sorry to ramble, I'm trying to say that asking about timeline was one of the worst decisions we made despite being desperate to know. I hope your dad gets through things ok and you can stay strong. It's not easy

[BlueEyedBengal]

I have no answers for you as no experience of this but just wanted to send hugs and best wishes your way. I did lose my father 6 hrs ago to lung cancer but he left my mother when I was 3 yrs and I wasn't near as he lived the other side of the uk , but in contact by phone when he died.

[BlueEyedBengal]

6 years ago he died, sorry my auto check is playing up.

[Mrswalliams1]

I am so sorry. My FIL was diagnosed last July with 2 large tumours on his liver. He declined all treatment. He was living a normal active life until late Jan when ascities started. Mid feb they started to affect his breathing and eating so they admitted him to hospital and sadly the decline from there was rapid. He died last week 4 weeks after being admitted. His tumours had grown a lot since July and his liver and kidneys failed a week before his death. I'm so sorry you are going through this. It's heartbreaking x

[Greatbigwhoooo]

So sorry about your dad. Not liver cancer but when my dad was first diagnosed with terminal secondary lung cancer it all seemed very surreal as he was actually quite well in himself. Stayed that way for about 3 months, but things changed very suddenly and he deteriorated very quickly. My parents had to cancel a holiday they had only booked abou 3 weeks earlier. I know it’s not want you wanted to hear but it’s all so unpredictable, I think timelines can be a bit misleading. Make plans for sooner rather than later and be prepared to cancel. Hope you manage to make some special memories with him in his remaining time. It’s really hard to talk about but I’d also say don’t put off talking about what he wants for the funeral, it made things so much easier to deal with.

[thinkingcapon]

I'm pretty sure your dads consultant would have a chat with you if that would help ? Obviously with your dads permission!

We were given a "timeline" too when my dad was dying......it wasn't very accurate

I'm really sorry that anyone has to go through this. I wouldn't wish it on my worst enemy x

[DobbyIsAFreeElf]

I'm not a nurse but work on a cancer ward. Are they not able to put an ascitic drain in to drain the fluid? We have many patients who end up having an ascitic drain even when they're terminal.

[greenwhitefrog]

So sorry to hear this OP, it is very hard.

My DF died a few years ago of liver cancer, he was only diagnosed at stage 4 and was given 3 months at that stage, it was sadly very accurate.

His condition deteriorated quite quickly, after the first month he couldn't really go anywhere other than the hospital when necessary and didn't want to.

If you want to plan some trips with your dad I suggest you do so ASAP, if his condition doesn't deteriorate quickly then you can do some more things later in the year but in my experience liver cancer is particularly nasty and the deterioration at that stage is quite rapid.

So sorry

[Luscinia]

I'm sorry about your father, OP. I had a friend who had liver cancer, it was secondary but the primary tumour disappeared with treatment. She had treatment for her liver, including chemo and ablation but they couldn't do any more because, although the tumours were small, they were all over her liver. From stopping treatment to her death was a matter of weeks. She had ascites and had the fluid drained off on more than one occasion, if I remember correctly, but it was very bad prior to her death. I don't know whether they couldn't drain it off for the similar reasons to your father. The thing is, everyone is different and you can't really say this or that may happen. That's why the doctors don't really like to predict a prognosis.

I would definitely arrange some of the things he wants to do. This helped my friend a lot. She didn't have much family but her friends were important and we all spent some good times with her. If you go far afield, don't skimp on insurance as you may need to cancel if he isn't up to the trip. Enjoy the time with him and make some good memories for you all.

[KittyConCarne]

anniehm thank you & sorry for your friend - you sound like a lovely friend to them.
That consultant sounds quite practical- I did ask Dad if his consultant had told him to "get his financial affairs in order", or ask if he needed MacMillan info etc, but Dad said he was quite clear in the meeting that he wished to remain unaware/ he's quite a stoic & matter-of-fact person, so I'm not sure they would have offered that info/ words.

[FiveGoMadInDorset]

Sorry about your news, DH is terminal and we don't know how long he has got. He did have liver cancer which was secondary to bowel cancer, they did manage to increase the size of his liver before removing half of it and it hasn't come back there but unfortunately it has now spread to lungs. Not knowing how long can be frustrating in terms of booking stuff to do, days out are easy but weekends away are more problematical. I have booked two weekends, one beginning of April and one mid May but nothing beyond that. If travelling abroad insurance is expensive.

[KittyConCarne]

twinklebee thank you and I'm so sorry about your mum.
I can't really decide if I should be looking up timings etc- I want to feel some control, but I'm not going to get any obviously lol- my Dad's way of "taking as it comes" is probably more sensible, but I feel like I'd be more helpful making plans.

My Dad still lives in the same house as my mum, but they have a very strange dynamic/ separated really for the past 10+ years, but still co-habiting. And my DBro lives local but is not the most family-orientated to say the least lol. I'm fully aware that I need to be the main support person & the only travel/ trip companion as that's just the way the dynamic is.

Absolutely fine, but I need to be organised for childcare/ my partner arranging leave from work if I go away with him/ when to broach the subject to my DC (ages away- no need to mention/ imminent- soon so they can spend time with him?)- I want to make playlists of his favourite music if we're going to be in hospice...blah blah, but I can also see that I might end up preparing stuff for the very end and waste time/ just "be waiting", when I could be living life to the fullest with him instead. So maybe I should just stop with the research & ask him what he fancies doing/ having fun with instead.

[KittyConCarne]

BlueEyedBengal thank you for your kind thoughts, and I'm sorry for your Dad- no matter distance/ time, I think losing a parent is a very difficult thing to endure

[ginswinger]

Gently, no one can really give you absolute timescales and if they did, they may be wrong. Cherish the time you have and by all means make plans but they might not come to fruition. You're going to have to submit to the process and make the most of the time. I am so sorry you're going through this and my heart aches for you. I have been there but you will get through this. Take photos, and videos if you like, cry a lot and ask him what he wants to happen. Knowing his wishes is useful because you don't have to second guess.

I wish you well xxx

[thinkingcapon]

Rem also that it may be tricky to insure your dad , god forbid he deteriorated whilst away with you on a trip (if abroad) x

[KittyConCarne]

Mrswalliams1 thank you very much, and I'm really sorry for your loss.

Your FIL's timeline sounds remarkably similar to my Dad's- even down to the diagnosis in July 2018, and the ascites developing in late January 2019. Seems wrong kind of, that my Dad seems to be following the same timeframes even with having treatment.

Dad seemed active/ looked well up until late February. Since then he's been eating less (says it makes him feels bloated), less active (says some days feel like he's "walking through treacle" and finds it really difficult to walk), has mentioned he's having difficulties breathing in the middle of the night, and he's sleeping/ napping several times a day.

I think I'm a bit scared that it's possible we only have a month or so where he might be well enough for trips etc. But your post has given me a kick up the bum that I needed- to crack on with asking him what he'd like to do and get booking. On the flipside though, he's adamant that he doesn't want to know what time he's got left, so I'm a bit worried that I might panic or scare him if I say let's get up to Scotland in a fortnight's time, or on the other hand he might say "Don't be daft- that's hardly any time to organise anything, let's leave it til May/ June when the weather's nicer" arghh!
I said this to my other half, and he said maybe I should use my career break as an excuse- my Dad knows my career break officially ends in June 2019, so I could say I'd like to get up there while I'm off work, rather than making it because of Dad's lack of time?


Thank you very much for sharing your experience- I think your story is so similar, and the stark information I think I wanted to hear. Please take care of yourself and your family while you are learning to cope with your loss- my thoughts are with you

[twinklebee]

Thanks @KittyConCarne. Honestly there's no right or wrong way of doing things. You have to follow your gut and your heart and do things as best you can. Your friend's advice sounds pretty good. Just take it bit by bit and use as much support as you're able to

[Oly4]

You poor thing. My DM died of cancer and once treatment stopped, it was a fairly rapid decline. If your dad is up to a trip then go now. But the truth is as his health gets worse you’ll want to be near a hospital and hospice.
I get what your friend is saying but it’s ok to be upset in front of your dad, you may find that enables him to shed a tear too. It’s both a strange and horrible time but I take peace in the fact I said what I wanted to say to my dM and we had our close chats before she went. Tell him you love him and what a amazing dad he’s been, don’t hold anything back. And spend as much time together as possible. The drugs my dM was on to control pain made her delusional toward the end, so make sure you say what you want to say nowish. Big hugs. The greatest gift you can give him right now is your time and your love.

[lifebegins50]

So sorry to hear about your Dad. My father had liver cancer and sadly it did progress very quickly from when treatment stopped, just a few months.

It might be worth contacting the Liver Trust as they can be supportive. I wish you strength over the coming months and hope you have support.

[madroid]

I'm so sorry kitty. It's such a tough time and for me overshadowed by the constant worry of how I would cope afterwards but somehow you do get through. People told me that but I just couldn't imagine. It was all such a shock and like your Dad my dm didn't want to know any timeline.

My advice is to just judge day by day. But if your Dad wants to go away go now because you can't be sure he'll want to or be up to going even in a few weeks. When it came to it, my dm and I didn't feel confident enough to go away from home but we had some lovely walks and afternoon trips locally. The main thing was that we had lots of time together and I was by her side through it all. I am so lucky to have her as my mum and feel v grateful for that last precious time. Wishing you strength, light and love.