Stage 4 lung cancer - What to expect

[benny77]

Hi

A close family member has recently been diagnosed with stage 4 NSC lung cancer that has infiltrated at least 3 vertebrae (but not in the spine itself). They are still waiting on the treatment plan but the Consultant wouldn't give a prognosis but did talk about treatment prolonging life rather than it being a cure.

Has anyone any experience of this type of cancer and what we should expect? Family member is early 50's, an alcoholic and still smoking. Consultant says they seem fit and well but they have lost a lot of weight over the past few months and seem very frail to me and other people that know them.

Thanks

My experience is my Mum and stage 4 Bowel Cancer (spread.to her liver)

They wouldn't give a prognosis either. She was.losing weight and getting frailer. She was given some.options on palliative chemo on 10th May to "think about". She made a recording of this consultation for me (because I couldn't be there) and it was quite an upbeat conversation - not in terms of outcome (that wasnt mentioned and we already knew it was terminal) but upbeat in terms of taking a few weeks to decide.

Mum was gone on May 22nd, before the follow up appointment.

I can't be sure but from caring for her at the end and her level of jaundice, I think it was the liver that did it, rather than the bowel tumour. And presumably had she had tumours in a different place on her liver it might have affected her differently and given her longer. This is probably why they can't give a prediction.

I'm.sorry you are experiencing this x

Really sorry you are going through this. My mum had lung cancer in her spine and we had twelve days with her after diagnosis

There's no typical path... my DM diagnosed with stage 4 2 yrs ago. Still doing really well. No treatment for last 6 months & it's not growing so must be a slow one. She doesn't smoke & light drinker. I'm sorry you're going through this. It's hard x

The vertebrae are the spine. Sorry to hear this. Always very difficult to give timescales but probably months rather than years.

So sorry, my dad died of lung cancer. He died about six weeks after prognosis/ diagnosis. It had spread. He wasn't offered chemo, they actually said six months. I think it had spread this brain too as he had hallucinations.

He became incredibly tired, his legs swelled and leaked water, he got angry too (understandable).

At the end he slept more and more, he had signed a dnr so be prepared for that conversation. They left morphine and other medications at his house but we returned them after his death.

If I had the time to live over, I'd do more/ make more memories as early as possible as it got harder and harder. He deteriorated quickly which I believe was a blessing for him (I actually think he'd made the decision in himself). We couldn't get him into the local hospice as there wasn't room so maybe think about that if that is something he would want. I'm glad I spent a lot of time with him.

What you experience and what your relative goes through could be completely different.

Thanks for all your replies and sorry for your losses.

The Consultant said that it was in the vertebrae but not the actual spinal cord. He does seem to have picked up slightly since they increased his pain relief and prescribed steroids.

He's living with me and my family for the foreseeable and I'm trying to figure out what I need to do and have in place to make him as comfortable as possible. I'll see if I can get in touch with his Macmillan nurse next week (I think he is in denial about what's happening)

Thanks again for your replies x

I don’t want to add to your stress but I’d echo other posters. My Dad died 12 days post diagnosis of stage 4 cancer, the deterioration was so quick. However, not everyone is the same I just wanted you to be prepared in case it’s short

We had 5 months with one relative (lung, inoperable, tried chemo but made her sicker)
Just 6 weeks with the other (metastised to lung, declined treatment, went downhill fast)

My experience with both is that they kept going, trying to live as normally as possible, until they really couldn’t, and it was obvious in the last two weeks we were near end stage.

Meant to add I’m sorry you’re going through this. Hold on to every positive thing you can - a funny moment, a shared memory, a big smile, an enjoyed meal, a ‘good’ day - and focus on those things when he’s gone. Try not to less the illness define him; this is a small part of his whole life. Be bold about practicalities like his will, bills, banks, funeral plans etc as these are much easier to navigate afterwards with a bit of knowledge.

“when you’re going through hell, keep going”

So what I learned was...

As soon as possible liaise with the palliative care system (my Mum wasn't in this system as she was still considering chemo so was still technically under the oncologist). See what options are available.for support.

Ask.if you can have "just in case" medications at home - it's a box of end of life care medications and they can be administered by calling nurses. The GP dropped one off not thinking it would be needed for some time but it was very useful when.mum went downhill over a weekend.

At the very end Mum couldn't walk the stairs. If he is planning on staying with you then think about whether at that stage he will be upstairs or down and do you need a hospital bed, commode, etc.

Look into attendance allowance.

If you can still make memories then do. If he is able to share information like passwords, list of investments and income.etc then do engage but he may not want to

Good luck x

For reliable info and forums where you can chat online with others who are or have been in similar situations, I'd recommend the Macmillan website
Lung cancer | Macmillan Cancer Support
(1) Lung cancer forum | Macmillan Online Community

There are also more generic forum groups such as those for family and friends, carers, bereaved etc...

Thanks everyone. He went to bed at 9pm last night and is still asleep now. I'm hoping the appointment for his treatment plan comes through this week x