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Cancer

Find advice & support if you or someone you know has been diagnosed with cancer

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Original poster

stage 4 lung cancer

14 replies

Kirstymariex · 01/10/2025 20:16

here for a hand hold.
My brother is 41, and has just had a stage 4 lung cancer diagnosis that has spread all over. Hips, leg, stomach, stomach lining, spine.

he is given 2-3 months if he doesn’t have chemotherapy and upto a year if he does.
i know this is going to make him poorly but he’s in so much pain right now they’ve had to up his meds and delay treatment starting until they are on top of the pain.

do you have any advice on what i can do as his younger sister to help?
we’ve already lost our parents so it’s just us siblings. My brother also has learning difficulties, i’m so worried about his mental health.

OP posts:

AntiBullshit · 01/10/2025 21:33

How sad this is for all concerned. My Dad had lung cancer and had chemo/radiothraphy and it it give him 6 months but from 4 months in he was sleeping so much. He was in and out of hospital from month 3 after his diagnoses he had 2 bloood transfusion. After the first he was delightted that he could actually stand and do the washing up - honestly it was like he’d won the lottery. That was short lived and 3 weeks beofre he died he could barely walk 3 steps.
Having seen how cancer robbed him of the person he was I’m very in the corner of quality of life over quantity.

All you can do is be there for him and listen to him when the dark times happen and they will. The pain. The thoughts of dying. Being overwhelmed. Being angry. Being so sad.

I wish him and you the best

Vallmo47 · 01/10/2025 21:35

I am so sorry OP.
I am just so very sorry.

Sally2791 · 01/10/2025 21:36

So sorry you both are going through this

hyggetyggedotorg · 01/10/2025 21:37

How awful. I’m so so sorry. With the added issue of learning difficulties I’d be inclined to say go for comfort above treatment, if treatment can only buy a very short time anyway.

I would ask for an urgent palliative care referral to your local hospice team who will be best placed to help.

You know DS best but if it helps him to believe he’s getting better I wouldn’t fight against that. Whatever keeps him feeling the most secure is key.

GlassofRosePorfavor · 01/10/2025 21:45

I'll tell you my dads story

he had stage 4 as well and was offered the same as your brother with the same prognosis

his last few months were horrible back and forth to the hospital, very ill from treatment etc etc. he passed away never really having any time to just be and come to terms with anything

I wouldn't have treatment if my prognosis was the same

mauvishagain · 01/10/2025 21:46

I'm so sorry to hear about your brother. Is it just the two of you?

You say he has learning difficulties - how badly is he affected, does he have capacity to consent to treatment?

I'd suggest you reach out NOW to any and all sources of help that you can find locally, for you and for him. The oncology team will probably be able to put you in touch with some of them but it might include the Macmillan Trust, and something like Maggie's centre (not everywhere has a Maggie's but will have another alternative).

Make sure you are both getting all the benefits to which you're entitled. Can you claim carer's allowance? Has the GP or hospital completed an SR1 form (used to be DS1500) for your brother? Does he usually work? Does he live with you, on his own, in supported accomodation? Is his accom suitable for someone in his position?

It's not easy to talk about planning for end of life, but you need to talk about things like his will; sorting out power of attorney; where he would like to be cared for if necessary. If his learning difficulties make this more difficult than it would otherwise be, then again, ask for help - is he under a LD team? Does he have any psychiatric or social work input?

Planning like this doesn't make it go away but can give a bit more of a feeling of control, and you don't want to wait until there's an emergency. You will want to advocate for him, but you need to look after yourself too and acknowledge your own feelings. The cancer charities such as Macmillan can act as a sounding board for you, but do you have anyone to lean on and help you IRL?

benny77 · 01/10/2025 21:47

Hi OP. I’m so sorry. I lost my brother to lung cancer earlier this year. It was just over 5 months from his diagnosis. He caught pneumonia twice in a really short period of time and couldn’t fight it off.

Although he wasn’t eligible for chemo, he had a course of radiotherapy which did help slightly with the pain. He didn’t have learning difficulties but I always suspected he was on the autism spectrum.

The best advice I can give is to advocate for him as the illness progresses. And also for increased pain medication if needed. Have they referred him to palliative care yet? They are much better at pain management than the GP.

As a PP has already said, all you can do is be there for him. And be prepared for the emotions not only from your brother but what you will feel yourself.

Take care

mauvishagain · 01/10/2025 21:48

Oh, and if you haven't already done so, you need to talk with your brother and ask him to specifically give consent for his medical team and GP to share information with you. (This assumes he has capacity to do so. If not, maybe info sharing is already in place?)

glittereyelash · 01/10/2025 22:02

I'm so sorry to read this. It must have been such a shock for you. My mam had the same diagnosis. It was during covid so she refused the treatment and came home. She lasted six weeks but was realitively well until the last few days. There wasn't much we could do but be present, try and keep her spirits up and let her talk about however she was feeling. I hope you have a good support network yo help you through.

sillysmiles · 01/10/2025 22:09

Has his consultant talked to him about immunotherapy?

QuickPeachPoet · 01/10/2025 22:53

This is so sad.
Definitely prioritise palliative care and making him as comfortable as possible, as there is no chance of recovery.
And take care of yourself as well.

Higglea · 01/10/2025 22:57

So sorry OP nothing to add but thinking of you during this nightmare. I’m sure you’ll do what’s best for your brother. There are no words really but I didn’t want to read and run. Thinking of you x

chickenfordinner · 01/10/2025 23:25

So sorry to read this, so very sad. As others have said it’s worth thinking about quality of life and what he wants to do with however long he has. The hospital may have a psychology team who can offer support to him and you if needed, or community palliative care teams are often excellent. Take care of yourself too as much as you can and draw on support networks.

ChickpeaCauliflowerSalad · 01/10/2025 23:36

Big HUG

I'm so very sorry xxx

my stories are too long to go into, but if there's only the hope of a short extension of life, having learnt the hard way, I would 100% go for comfort & pain relief. Not chemo/radiation. It may extend the lifespan of someone but it doesn't increase the living time - the time to enjoy time with loved ones

i would hope if I couldn't choose for myself, those I have trusted my welfare to would respect that. (I've done as much legally as I can)

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