Experience of Stage 4 Cancer

Winterfairy23 · 2021-08-21T07:21:28+00:00

My mum has just been diagnosed with stage 4 lung cancer which has spread to her bones, liver and ‘a few other small areas’. She also has blood clots in her legs. We were told a few weeks ago cancer was suspected and it was confirmed as above last week. We still have another 2 weeks of waiting to find out if they can offer any treatment although they’ve already explained it can’t be cured because of how advanced it is. I suppose I’d like to know other peoples experiences with this sort of diagnosis.

FlowerArranger · 21/08/2021 08:25

I'm sorry to hear about your Mum.

I have no personal experience but from what I know MacMillan is a great support for cancer sufferers and their relatives:

www.macmillan.org.uk/cancer-information-and-support/advanced-cancer

peridito · 21/08/2021 10:05

I'm so sorry .Being brutally honest I would think that they will offer palliative care and that her time might be quite short .

I hope this doesn't seem insensitive - .my twin died last year from cancer .We knew his condition wasn't treatable but none of us ,including him ,had a realistic idea of his prognosis and he had to put really specific questions to the consultant .
These were
What is the worst case scenario for me in x nos of months ?
What is the best case scenario in same nos of months ?
Where do you think I am now ?

I don't know if that makes sense and I'm sorry if it doesn't .

sending love and strength

CirqueDeMorgue · 21/08/2021 10:08

My DM was diagnosed with small cell lung cancer around a year ago. As with your DM, it has spread. She's had a lot of chemo and some radiotherapy but I'm not super clued up because she doesn't talk about it much. Anyway, she's not getting better but she's still here. I'm really sorry to hear about your mum, it's shit.

Bagelsandbrie · 21/08/2021 10:09

@peridito

I'm so sorry .Being brutally honest I would think that they will offer palliative care and that her time might be quite short .

I hope this doesn't seem insensitive - .my twin died last year from cancer .We knew his condition wasn't treatable but none of us ,including him ,had a realistic idea of his prognosis and he had to put really specific questions to the consultant .
These were
What is the worst case scenario for me in x nos of months ?
What is the best case scenario in same nos of months ?
Where do you think I am now ?

I don't know if that makes sense and I'm sorry if it doesn't .

sending love and strength

I was going to say the same thing. I feel awful saying that because at times like this you want to offer hope - and for many people with stage 4 cancer that are younger now there are very good drugs which can hold off the spread but this is more difficult as people become older as their bodies can’t cope with the same amount of drugs etc. However; every case is different and I think at this point you just have to wait and see what is offered.

My mum was diagnosed with stage 4 bowel cancer at 70 and died 6 weeks later. However, this was compounded by her having lots of health conditions such as copd and Crohn’s disease.

I think it’s best to just try and stay strong - as cheesy as that sounds - and see what they say.

Original poster

Winterfairy23 · 21/08/2021 11:20

I’ve accepted that anything offered would be palliative at this point.

I suppose it’s the waiting to see what else they say. I’m not sure if they’ll offer timescales or if we’d have to ask. I also don’t know if I’d like to ask in front of my mum but I’d also like to know to prepare myself mentally.

It sounds quite varied from the replies her. 6 weeks to 12+ months is quite a difference.

OP posts:

lljkk · 21/08/2021 11:27

There are resources online about how to achieve good quality of life in the palliative period.

Atul Gawande's 4 key questions seems like a very good place to start. I suppose those questions are all about how to put meaning and purpose into the experience.
for you.

Annietheacrobat · 21/08/2021 12:32

Her prognosis will really depend on her fitness and the subtype of lung cancer . The outlook for stage IV lung cancer is better than it was a few years ago, and there are new 'non chemotherapy drug treatments for certain types.
Thinking of you

peridito · 21/08/2021 16:34

It would be the spread to the liver and the bones that I would find concerning .

BonnyandPoppy · 21/08/2021 16:41

My stepdad had a similar diagnosis a few years ago and died about 8 weeks after diagnosis.

Moonlaserbearwolf · 21/08/2021 16:43

Sorry to hear your news.
My friend was diagnosed with stage 4 lung cancer last March, so nearly 18 months ago. She has had a few rounds of chemo and then immunotherapy. Some days she feels really tired and can’t get out of bed, then the next day she feels pretty good. The immunotherapy seems to be keeping the tumours at bay, though she does suffer from myopathy. She is in her 60s and was in generally good health before she was diagnosed.
Macmillan has been brilliant - thoroughly recommend.

LaCerbiatta · 21/08/2021 16:46

@Winterfairy23

I’ve accepted that anything offered would be palliative at this point.

I suppose it’s the waiting to see what else they say. I’m not sure if they’ll offer timescales or if we’d have to ask. I also don’t know if I’d like to ask in front of my mum but I’d also like to know to prepare myself mentally.

It sounds quite varied from the replies her. 6 weeks to 12+ months is quite a difference.

The mum of a friend was diagnosed with stage 4 lung câncer and was treated with Tagrisso. It prolonged her life by around 1 year with hardly any side effects. It's a drug that targets a specific mutation and your mum may not be eligible. Also, my friend went private so not sure what the NHS offer. Still thought I'd mention.

More information here

StrongArm · 21/08/2021 17:56

My mum had stage 4 throat cancer that had spread to her jaw bone but remarkably we did get a few years with her. It was the treatment in the end that got her as it made her very weak and ultimately she made the decision not to continue with treatment and try and enjoy her remaining time. She was a life long smoker.

So sorry to hear your news x

mrsed1987 · 21/08/2021 20:59

My mum was diagnosed with stage 4 overian cancer in 2016. She is still here and pretty well. She has had lots of chemo and we are getting to the point where options are running low but when she was diagnosed the statistics said 10% chance of living 5 years or more..it was 5 years last month.

Please stay positive and strong

Original poster

Winterfairy23 · 21/08/2021 21:37

It sounds like some of your loved ones have had more positive outcomes given the circumstances.

I’m sorry to hear of the ones who were less fortunate in terms of timescales.

I think I’m worried chemo would reduce her quality of life to the extent that she’d be unable to enjoy the time she has, although it wouldn’t feel right to sit back and do nothing.

I suppose I’ll need to ask the best and worst case scenario and brace myself for the answer. It’s not a nice situation to be in at all. The waiting in between appointments is difficult. I wish we knew more now.

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Jasmine11 · 21/08/2021 21:44

So sorry about your mum. My father in law was diagnosed with stage 4 cancer (of an unknown primary) at the end of February and we were given a rough timescale of around a year with palliative care. Sadly he died around 6 weeks later and the end decline was quite sudden. Sorry if that's not what you wanted to hear but I think it's important not to rely on false hope where advanced cancer is concerned. It's such a cruel disease. I hope your mum is able to be kept comfortable x

Original poster

Winterfairy23 · 22/08/2021 07:33

@Jasmine11 so sorry to hear about your FIL. Thanks for sharing your experience. What a shame the estimate the doctors made was way out. I think it’s the uncertainty of it all that’s making me really anxious.

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StrongArm · 22/08/2021 10:12

@Winterfairy23 it is worth speaking to them about the options. They wanted my mum to try a lot of things and she did for a bit but the treatments themselves made her ill and with throat cancer, you struggle to eat too so she got v thin and in the end, she stopped the treatments (by that stage she had had part of her jaw replaced and radiotherapy and chemo). She seemed much more at peace I think once she'd tried and then decided just to live out whatever time she had left. She did last a long time - years after they said she would and mercifully she had a heart attack and died suddenly one morning so was spared too much suffering.

Needapoodle · 22/08/2021 10:30

My nan was recently diagnosed with stage 4 cancer. She was offered radiotherapy which she did have the first course but it was far too much for her physically and mentally and she decided to stop. This week she's had blood clots in her leg. I don't think we've got very long left with her at all to be honest. She was diagnosed about 6 weeks ago. I'm so sorry to hear about your mum op.

WaitingForNormality · 22/08/2021 14:24

My Nan was diagnosed with stage 4 lung cancer a few years back. By the time of diagnosis it was in her bones, throat and IIRC small areas in her brain. Treatment was palliative only. She was in hospital for 2 weeks then asked to come home where she was nursed by us and community nurses and died 4 weeks later. I'm so sorry as I don't want to upset you but wanted to share our experiences to prepare you just in case. It was quite shocking in terms of how quickly she declined after diagnosis but I would say that having also witnessed family members last longer with cancer it was easier for the end to be faster and more peaceful.

MuchasSmoochas · 22/08/2021 14:40

So sorry OP 💐 My dad was the same, only diagnosed at Stage 4 and he had 8 weeks. My understanding is once it’s in the liver it’s not good. He had radiotherapy, don’t know what impact it had. He was in good form until the last 2 weeks and then it was a difficult time. Thinking of you and your family.

augustusglupe · 22/08/2021 14:51

My mum was stage 4 when she was diagnosed with Cervical cancer. This was over 20 years ago. It was a very aggressive form of the disease anyway. They didn't operate. She had some radiotherapy but died 9 months after the initial diagnosis.
My thoughts are with you, I know it's a really tough time

MuchasSmoochas · 22/08/2021 14:54

And I’d agree with @WaitingForNormality , there are worse ways to go. He got to sort out his affairs, say his goodbyes and he knew how much he was loved. I’ve seen people have awful experiences going through Stage 1-4. Although this will not be of much consolation.

Idontneedausername · 22/08/2021 15:03

My mum was diagnosed with stage four lung cancer in 2019, 2 years ago next month. Initially they thought it was confined to her lung but after further tests it had spread to her brain, across her chest wall and onto the outside of her heart.

Remarkably they treated her brain tumour first within weeks of diagnoses, with a brain operation then radiotherapy to her head. Once recovered from that she 10 months of radiotherapy every weekday and 10 months of chemotherapy alongside it, once per week. Those treatments strunk the cancer so much she only had small patches left! She dealt with it amazingly well and hardly suffered any side effects, was still quite active throughout her treatment, obviously some days she did struggle with tiredness and weakness. She finished year long immunotherapy in March this year which she had weekly, that took the remaining bits of cancer she had left and amazingly now, she's been she's in remission! Words we never thought we would hear.

She has scans every 3 months of her head and lungs but so far so good, although we were told it was treatable and not curable so it is likely it will come back which is a worry but for now she's cancer free and living each day as it comes.

Original poster

Winterfairy23 · 22/08/2021 21:58

I’m so sorry to hear all of your heartbreaking stories ❤️

There are also some hopeful and uplifting ones.

When people are saying their loved ones went from
diagnosis to passing in just a few weeks, I find it really hard to imagine how unwell they must have been when they were diagnosed, or how quickly they deteriorated if they were initially quite well.

I’m going to spend as much time with her as possible and try not to wish any time away because time is precious. I suppose the upcoming appointment will reveal more but the wait is unnerving.

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