Life expectancy

[pintofpkss]

Just wondering if anyone had any advice.

my mum was diagnosed with lung cancer around 2 years ago. The tumour was only small so just monitored her with scans every 3 months. It had grown in that time, maybe 5cm.

For the past 3 months she’s been having really bad pain in her ribs and back, the side where the cancer is. She’s had numerous painkillers from the gp that haven’t helped.
Shes been for her scan results today and the cancer has spread to her chest wall and also her lymph nodes. They’ve also told her she has fluid in her lung. This is the reason for the constant pain. She can’t have treatment due to her having really bad copd and treatment would just make her worse and give her no quality of life. She has been told she has cancer and nothing more can be done for her. Just been given oral morphine and slow release morphine in a pill. Her breathing has also gotten a lot worse. They’ve told her if she feels she’s getting worse then she needs to contact them otherwise they will contact her in 8 weeks for a check up.

My question is does anyone have any idea how long she may have, has anyone been through this. How long before she gets really bad?

I wasn’t at the appointment so couldn’t ask any questions. My sister was with her and my mum didn’t want to know anything she said if would make her worse knowing

Sorry to hear this. Please ask for a referral to the palliative care team in your area, they will be able to talk you through everything and support both you and your mum. They're geared up specifically for this whereas generally speaking, hospitals are more focussed on providing a cure. Sending love and strength.

Thank you. Yes think that’s what we will do. Just a bit shock to us all at the minute and we’re just trying to get our heads round if. Thank you I will look into this.

As soon as my grandmother started needing morphine it was about 2 weeks. Sorry.

Sorry to hear about your mum OP. My mum had lung cancer and although too old for chemo (95 when diagnosed) she did receive tablet treatment for more than 2 years. Eventually it was making her feel too ill so she stopped after a discussion with her oncologist. Like your mum, mine didn’t ask/want to know, but I did, especially as my sister lives on the other side of the world. The lung cancer specialist nurse was able to very accurately predict how long my mum might have. She told me what to expect and was spot on. If it’s any comfort my mum died very peacefully at home, in no pain, with my sister by her side.

My dad died of cancer last year - I read somewhere that if their condition deteriorates from month to month, then they have months left, if it deteriorates from week to week, then it is weeks left, if they deteriorate from day to day the the have days left. I am so so sorry for you all, and for your mum. Sending lots of love x

As previous poster says i would push for referral to palliative care team through GP. they can help with symptom control, have links with local hospice if needed etc. I'm really surprised the hospital have not already arranged this tbh.

Thank you all for your replies. Her gp has rung her and wants to come out and see her to discuss a care plan with her and her wishes. She seems to be getting worse monthly not weekly or daily just yet. She’s only 68 as well. Me and my sister really want to know what to expect and be prepared for it all

Sorry you're going through this.

If her condition is worsening fairly slowly, that generally means she's got more time.

In my dad's case once the deterioration was weeks and then days it was clear he didn't have long. The cancer projectory is fairly predictable from what I read..

That sounds positive that the GP is coming out to discuss. Hopefully they will get palliative care Nurses in place, discuss her wishes for where she wants to be at the end ( home , hospice etc) and get end of life drugs in place at home. They can also arrange things like home Oxygen if needed. I'm so sorry you are going through this especially as she is so young, must be an awful shock. Make sure you get support for yourself too. If finances are an issue and your mum is not already on a disability benefit then this can be fast tracked or if she already gets one and it's not the highest rate it can be increased. . Speak to GP, Age Uk or macmillan benefits team. The money can be helpful towards extra heating, aids or just whatever you need it for.

Thank you again everyone.

She does receive the highest rate disability and also I think she will need oxygen in the house. She now has fluid on her lung from it all so it’s made her breathing even worse than it was with the copd. She’s had her first lot of oral morphine tonight and it seems to have helped her breathing a little and took away a lot of the pain. We will just have to wait see what her doctor says now

Can I just add a word of warning about the morphine, it is terrible for causing constipation and my poor mum ended up in hospital because she was impacted. Although district nurses were in occasionally no one was monitoring this side effect so make sure your mum gets regular laxido or equivalent.

I have professional experience of this but before I say anything I’d like to know your thoughts and ideas. What do you think based on how she is?

Thank you I will let her know

Sorry to hear this. I would talk to your local MacMillan. They were brilliant recently when my very good friend died. From experience I would say they give much more realistic timescales and advice than the oncology team. They will also help later with advising re hospice care etc if it comes to that
Pushing for a palliative referral is a good idea

I think she has got worse. I’d say in the past 3 months. Her breathing is really bad. She has copd so always struggled with breathing but now she’s out of breath just standing and taking a couple of steps

She seems to have given up on trying to do anything. We ask her to come out for lunch and other things but she won’t. It’s always to much of an effort for her.
She’s so tired from getting herself ready.
My sister thinks 6 months but I’m thinking less. Maybe 3-4 especially now she’s found this out. I think she will give up all together and just sit and wait for it to happen.

I agree with asking to be referred to a local hospice. They really help with questions and helping people and their families get through these difficult times.

I have stage 4 lung cancer , I've also had fluid on the lung but it was drained off and I felt much better . I've had the diagnosis for 5 years . I agree with your Mum about not wanting to know how long etc , it is never accurate as no one really knows and it also removes all hope . I'm also on morphine , it's really helped me to have as normal a life as possible.

I’m really sorry this is happening for you.
I’d say your expectation is probably more realistic than your sisters unfortunately.
Everyone is different but a few months is realistic and maybe less.
encourage her to use the morphine if it helps, small doses of oral lorazepam may also help the breathless and panic.
if she isn’t already under the district nurses get her referred as they are amazing and will do the majority of end of life care in terms of syringe drivers or injections but also in terms of equipment at home. Make sure your mum is receiving the necessary benefits, McMillan can help with this and it will make things easier for you all.
don’t be afraid to ask for what you need (I’m a GP but good end of life care is the most important part of my job)

So sorry for you all especially your mother, she is quite young yet.

Do you know if there is a reason why they haven't drained the fluid from her lung? There may be very good reasons why not, but if they could it would give great relief and improve the breathing. Maybe the COPD precludes the drainage, I don't know, but it's the first thing I thought of.

And yes, do get GP etc. to refer to palliative care. They will advise you more about how things might progress and whether hospice at home is advisable or not when the time comes.

Big hugs to you all. It is hard to wrap your head around it all. Aim for comfort and pain relief as much as possible.

She has lung cancer, copd, fluid on the lung and in ops opinion she doesn't go out anyway. I.E no quality of life. I won't write the rest out of my sentence as I'm sure you can imagine and I do not want to be a twat for op.

Im so sorry op, enjoy Christmas with her 💚

Thanks again for your comments and kind words.

The reason she can’t have treatment is due to her really bad copd. She really struggles to breath as it is so treatment or a drainage would just make her breathing impossible basically. At least now she can move around a little and take it slow.

It was Christmas 2 years ago when she found out she had cancer and now Christmas again we’ve found out this.
we need to make this Christmas one to remember for us all and give her the best one possible.

I didn’t sleep much last night, it’s just all hit me that in a few months even could be weeks I will no longer have a mum. A best friend, someone I got to every day for advice. My heart is breaking for her, my sister, brother and my children. My children are still young and the thought of her going and having to tell them is the worse feeling

Your last comment has really hit home. My mum was diagnosed two years ago and, although her treatment plan and her quality of life are very different to your mum's, that feeling of it all hitting at once was so familiar. I was sat in a meeting at the start of term (teacher) listening to the plans for the year ahead and I remember thinking "none of this bullshit matters. My lovely mum won't be here by the end of the year". Thankfully she is, but it's still a lingering cloud every day.

I second getting in touch with Macmillon. They are there for friends and relatives as well as the patient.

I hope the morphine starts to make her feel more comfortable. We're all here with you whenever you need it 💐

Thank you so much.
Im really sorry to hear about your mum as well. It’s so hard to go through this. You hear stories but never think it’s something you will go through.
No one understands until it happens to them