Stage 4 lung cancer: what happens next

Claire Voyant

A relative has advanced lung cancer and will be discharged from hospital soon. Plan is to move in with us for the foreseeable as this seems to be the best option all round. They can't easily fend for themselves but there's no real need to be in hospital. Not very mobile but can walk short distances and is fully compos mentis.

I just want to have some idea of how things develop from here.

We'd all prefer them to stay with us as long as possible. However, we do also have kids in the house and I worry that it might become distressing as things go downhill. In particular, I worry about pain - for the patient, first and foremost, but also the impact this might have on the younger members of the family.

Does anyone have any experience of this? I'd really like someone to spell out some of the trajectories this might take so that we can prepare ourselves. As good as the health professionals have been, nobody seems to have bluntly explained what might be in store.

Pretzill

I have experience my mam suffered terminal lung cancer. I will firstly say I'm sure everyone is different, and I met survivors of this disease too but mum's illness progressed quite rapidly.

However she was well - compus mentis the entire time and managed on moderate self induced pain relief up until about two weeks before she passed.

Oxygen would be a normal course of action, in the home too, as breathing difficulties and pain progress with the disease - a pump for morphine or just metered doses by mouth.

You will know if they are so unwell that they may need extra care and possibly hospice or hospital care and they will know too.

It's a wonderful thing you are doing - in my limited experience lung cancer patients can be outwardly well - having fun, living their life and experiencing the good days with them is to be treasured - when it gets very bad please be assured there is help available.

Claire Voyant

Thanks a lot Pretzill, that's really helpful.

Claire Voyant

Just giving this thread a bump in case there are any other experiences to share.
Looks like chemo will begin soon - which we had thought was not likely. Hope it has some palliative impact and that side-effects are few.

I'm still not particularly optimistic about the prognosis although some see the initiation of treatment as an encouraging sign. The doc was talking about three months of treatment, then a break for a few months, and then another few months on chemo.

I hope I'm wrong but my reading of median survival stats (coupled with knowledge of the patient's general health status) suggest this story will reach its end before Christmas, if not much earlier. I'm not anti-medicine by any means but I really wonder whether they are treating for the sake of it rather than in the interest of maximising quality of life.

qo2cj1dsne8y4k

My dad's illness progressed rapidly once he finished his treatment. He got through chemo fine but radiation burnt him, made him so ill, turned him off his food and shook him to his core. About 2 weeks after his radiation ended he started to fail quickly, wouldn't eat, wouldn't drink. Was extremely dehydrated and malnourished and so weak he couldn't get out of bed. He was admitted to hospital (Tumor free) discharged after a week and was after gaining so much weight in a week!!! Turns out he was so dehydrated he couldn't eat. Then he started taking little fits or mini strokes, became confused rapidly. Went from mixing up his time/not knowing day from night to being days ahead of himself, but would know where he was who we were counting to ten etc, it was time he struggled with.

He lost power of his legs. And over the course of 6 weeks he became more confused agitated angsty less inclined to eat take medicine or drink, became angry and he was not an angry person, but had bursts of clarity that could last for a few minutes or a whole evening. He talked about his mom and sister a lot (dead) and me a lot, (but didn't realise I was me) until 2 days before he slipped into a coma, he knew he was dying, and looked me in the eye and told me he didn't want me in hospital and to go home. He knew what was happening and didn't want me to be there because he knew it would have broken my heart.

Over the next few days he was in a coma, seemed to fight it to the bitter end. The last day and a half of his life he was in hospice/palliative care on morphine. I was praying he would die because he was so sick.

That's just my experience. My auntie died and had such a peaceful passing. The illness, the path to recovery and outcome will differ for everybody. Try not worry about things that you can't change and appreciate every moment you can

Ghekko

Fair play for caring for your relative. My mil lived alone and managed very well. We were not in a position to move to her but visited often to help out and Dh was very involved in her care as much as he could be. Is your relative under palliative care now? If not ensure this happens asap. While it sounds like something you organise for the end stages, it's not the case anymore and they are a great help and comfort, ensuring medication is tweaked/increased when needed. Mil did end up in hospice care for a good few weeks before she passed. She had a huge fighting spirit. Cancer had spread and she wasn't compis mentis at the end. She had been through chemo, radium and then maintenance chemo and then refused treatment for brain tumour. It was a tough couple of years but for us we did all we could and have no regrets. Don't ever feel bad if caring for your relative doesn't work out, especially if their pain becomes unmanageable for you to treat at home. And mind yourself too. It can be very upsetting to see a person in pain and feel helpless.

Lisa2011

I am currently experiencing this. It's not confirmed that my mother has stage 4 but it's in three different locations
besides the lung.

She had back pain in December and we put it down to normal back pain as she had no shortness of breath.

We were only told this two weeks ago. We knew it was bad news but hearing the prognosis yesterday was heartbreaking.

Being an only daughter I am very close to my mother and I am struggling with it but know when the time comes I will manage and get through the hard times ahead. I have my extended family, brothers,dad and nieces and nephews.

Ghekko

Sorry to thear that Lisa2011. It is very difficult to grasp the seriousness of what's ahead. Will your mum have treatment now? Make sure to have at least one other person, if not 2 at all consultant meetings so that all info will be taken in between you. It can be overwhelming to listen to doctors so this way nothing gets lost in translation, so to speak. And if necessary, write down what the doctor is saying. Accept help from anyone who offers - don't try to take on her care alone, and even with other family it can be tough. If a neighbour/friend offers to cook a dinner, or bring your mum to a chemo session, accept the offer. Even with a good family network it's still nice to have practical help from others especially if you and your siblings are working and have family of your own to mind. Palliative care may get involved but as I mentioned above it doesn't signal the end. They were involved in mil's care for over 2 years. While they deal with pain medication they are also a wonderful support to patients and their family. Your mum might find she can talk to the palliative care nurse about things she won't discuss with ye. In turn you can ask for ways in which you can help your mum through her treatment, both physically and emotionally. Follow your mothers lead. While she may understand how ill she is, she may not want to discuss it or choose to be in denial. Mil was in denial and though it was frustrating that she didn't mind herself as well as she should have and thought she could carry on as usual, we had to let her. We tried to get her to take things easier but she would do her own thing regardless. Take care of yourself too!

Lisa2011

Ghekko wrote: »

Sorry to thear that Lisa2011. It is very difficult to grasp the seriousness of what's ahead. Will your mum have treatment now? Make sure to have at least one other person, if not 2 at all consultant meetings so that all info will be taken in between you. It can be overwhelming to listen to doctors so this way nothing gets lost in translation, so to speak. And if necessary, write down what the doctor is saying. Accept help from anyone who offers - don't try to take on her care alone, and even with other family it can be tough. If a neighbour/friend offers to cook a dinner, or bring your mum to a chemo session, accept the offer. Even with a good family network it's still nice to have practical help from others especially if you and your siblings are working and have family of your own to mind. Palliative care may get involved but as I mentioned above it doesn't signal the end. They were involved in mil's care for over 2 years. While they deal with pain medication they are also a wonderful support to patients and their family. Your mum might find she can talk to the palliative care nurse about things she won't discuss with ye. In turn you can ask for ways in which you can help your mum through her treatment, both physically and emotionally. Follow your mothers lead. While she may understand how ill she is, she may not want to discuss it or choose to be in denial. Mil was in denial and though it was frustrating that she didn't mind herself as well as she should have and thought she could carry on as usual, we had to let her. We tried to get her to take things easier but she would do her own thing regardless. Take care of yourself too!

She began radiation for her spine and hip only had two sessions and had a fainting spell before her third session. They couldn't go ahead with it. We haven't had a consultant meeting yet but doctors working under the consultant have kept us informed.

The prognosis is weeks/months.

Pretzill

Lisa2011 wrote: »

I am currently experiencing this. It's not confirmed that my mother has stage 4 but it's in three different locations
besides the lung.

She had back pain in December and we put it down to normal back pain as she had no shortness of breath.

We were only told this two weeks ago. We knew it was bad news but hearing the prognosis yesterday was heartbreaking.

Being an only daughter I am very close to my mother and I am struggling with it but know when the time comes I will manage and get through the hard times ahead. I have my extended family, brothers,dad and nieces and nephews.

So sorry to hear this Lisa it is so tough - I shared my mam's journey earlier in the thread - she had primary lung cancer (non smoker) nowhere else - and the course of it progressed rapidly - But there are success stories and you need to take each day and do things together - I still have such fond memories of movie nights with mam and just ordinary and everyday things - cherish them.

Edit to add:

Sorry for your loss Lisa - this was posted before you posted on another thread. It's really tough when they go before we are ready for it.