Lung cancer spread to bones

[isthisaplum]

We’re in this horrible position (DH.) He starts radiotherapy on Monday. We don’t know what else to expect … I don’t know why I’m posting, I suppose I’m just wondering if anyone has any further information? Anything is useful!

Sorry that you are having to deal with this. Have they mentioned immunotherapy as that has had some very good results on non small cell?

I'm sorry to hear that OP - waiting is so tough. My DM was diagnosed with lung in February, it spread to her bones in the Autumn and then to her brain by November. She had chemo and then radiotherapy to her brain which gave her a few more good months. The end was quite fast in April. I would really stress here though that DM was diagnosed in 2008 - treatments change and improve so quickly in cancer research that the outlook for your DH is likely to be very different. The support from the Marsden and then later, the Princess Alice, along with McMillan were brilliant. Palliative care at the hospice was excellent, for the whole family not just DM and they were also wonderful with children. The hospice environment is much better than a hospital so explore the options before you actually need to so you know what is available and how to access while you can think clearly. I wish all your family the very best.

I'm very sorry to hear that, OP. I've been looking into LPAs (financial and health) recently, and it's essential to have them even if you're married - please check it out. Best wishes to you and your family.

Thank you all. We have a further meeting tomorrow but it does look likely DH may pass away within a year: this isn’t a given but it is likely.

It is difficult broaching this at present and I am hoping MacMillan may help us with this.

i tried to explain a bit to my five year old and told him cancer was a bit like a monster and the doctors could fight the monster and make it smaller but the monster would still be there. He seemed to understand this analogy fairly well. It’s hard to know what to tell my three year old.

We took support from the local hospice as our son is ASD so needed it to be very black and white.

You could apply for pip which helps with some of the extra costs, we had a pass for our local hospital which was great but some of the treatments where in Leeds and parking there was nearly a kidney 🤣

my DH wasn’t given long but we got 2 and a bit years with the treatments.

make sure you have lots of support around you IRL and look out for yourself too.

my DH wasn’t given in denial about it all and wouldn’t talk about it which was hard.

Thanks @notapizzaeater , is it your details I have? Keep meaning to reply sorry!

We have applied for pip but it may be that it is fast tracked … not sure yet. While money will help (doesn’t it always) the pressing problems aren’t financial as much as physical and emotional.

Sorry to hear about your ds and DH, how did he cope when DH did pass away? (I know a lot of people don’t like that but even with ChatGPT I do struggle to just say die.)

I’m very sorry to read this thread op. My Dad was diagnosed with stage 4 lung cancer 5 years ago. He was initially given 18 months, but unfortunately he was only with us for 8 months after diagnosis. It had spread to his bones too. It’s bloody awful. Thinking of you all.

So sorry to hear about your dad @SilveryBear

@isthisaplumyes it’s my details, my son took it well as my DH did not want to die in hospital / hospice so after his last admission and him going into a coma the hospital managed to get him home for 2 days before he passed so that really helped him accept what was happening as he could see how ill he was. My DH managed to work right up to the end ( his choice - his company were brilliant tbh) he worked from home and if he needed a Nana nap just logged off for a couple of hours. He was really well till he wasn’t IYSWIM …..

Sorry to hear about your husband. Have you been in contact with the lung specialist nurses at the hospital? Do they have support workers at your hospital.
local cancer support centres are helpful. He needs a form called a SR1 to fast track the PIP - the hospital can complete this (sorry if already mentioned/done)
well worth talking to citizens advice, there are other things he would be entitled to such as a blue badge.
any local hospices bear you? They always have lots of resources/support available.

Firstly I’m so sorry you’re going through this. My dad died from cancer in 2021 and my mum was recently diagnosed with lung cancer that has spread to her spine and brain. From what happened with them I learnt a few things that may be helpful to you:
• If your husband isnt already being treated at a specialist cancer centre you can ask his current dr to refer him to one of your choice. If they don’t or it takes too long you can involve PALS and ask them to help.
• Review available clinical trials and ask his Dr about any you identify as potentially relevant. A list of trials can be found on the Cancer Research website: https://www.cancerresearchuk.org/about-cancer/find-a-clinical-trial
• PIP can be fast tracked when someone receives a terminal diagnoses. Also make sure you investigate any existing life / health insurance he has, as many policies will pay out a sum in the event of a terminal diagnosis.
• If he requires any specific health equipment to enable him to live at home the nurses/Dr can help arrange this and also ensure that you have pain medication on hand at home, if and when it is required.
i hope this is helpful and I will be keeping my fingers crossed that your husband responds well to his treatments. Take care and make sure you look after yourself x

Am so sorry to read this op, but the good news is they're found it and know what's what. This is the most important thing.

My best advice and what got me through my own cancer diagnosis was to stay away from here and other online message boards. Your husband's cancer is unique to him, so what everyone else has to say is immaterial, even if their cancer looks the same on paper. At this point in time, listen to your husband's MDT. His cancer nurse will be invaluable. If you must talk to others online, I know there's a support thread on here for partners of those with cancer.

When I was going through cancer, I went to a Macmillan drop-in centre (as there was one at my hospital). Had there not have been, I would have called them. I went to Maggie's too I preferred Macmillan. They were amazing, I cannot recommend them enough. They have various information available too which looks at all aspects of cancer, treatment, and living with cancer, both as someone with it, and as the partner of someone with it.

What I do know is treatment for lung cancer has come on a long way. Yes, it's a hard one to deal with, particularly if it has metastasized, but, they are ways of treating it palliatively which can extend life. However, treatment is hard, even when one is in the best of health, so you need to consider the cost of it. But, that's getting ahead of things, not least because his oncologist might know of a medical trial and all sorts of things that could help. For now, get all the information from his MDT and then consider your choices. If you want a second opinion, ask to be referred.

Wishing you and your husband well 💐

OP which hospital is he under?

Has the cancer been tested for mutations?

has he been offered trials or treatment

there are so excellent treatments for stage 4 non small cell but you have to know if there are any mutations.

if you’re not under a cancer centre, that needs to be your first priority. The Marsden if you’re local to London, the Christie in Manchester, Southampton, and a couple of others.

nobody can cure it but depending on the markers and mutations he may well be an immunotherapy or targeted therapy candidate which can control the cancer, often for extended periods

ive been in your shoes but honestly do your research and ask the questions and don’t give up until you’re confident in the responses you are getting

I'm so sorry to hear about your DH. Both of my parents passed away with bone cancer. My mum's spread from her lungs to her bones. My dad's started in his bowel and had spread to his liver in 2020. They got rid of that, but then it popped up in his lungs and bones early 2022 - to be honest dad's cancer treatment was like playing whack-a-mole. However, my dad did survive until 2025 (when it spread to his brain) which far exceeded anyone's expectations. He was always bloody stubborn ❤️
I truly wish you an your DH the best. Please don't forget to look after yourself as well as him.

@isthisaplumWe’ve just lost a family member to this and I’ve looked back to see when it moved to the bones. It was November 2024. They were also much older than your dh and in poor health to start with (COPD, Osteoporosis amongst other things) I know this isn’t an exact science and everyone is different but just wanted to say that it’s possible you’ll have more time than you think. Sending 💐

I’m so sorry you’re going through this. And I can’t help but agree with @doublecand stay away from message boards. I know you’re searching for answers but your DH’s experience will be unique. Reach out to support services instead.

For your children I’d recommend https://www.fruitflycollective.com/ They have packs age specific and one for incurable cancer. They also have a thorough list of charities and support services for the children.

I used a book called Cancer Party by Sara Olsher to explain my diagnosis to my children who were 3 and 5 at the time. It’s a non scary way of explaining cancer and treatments he may have.

Take care and remember the support services and charities are for you too.

I actually found message boards incredible helpful in being able to understand more about options, treatments and to direct my questions more specifically to the consultant. We were able to have tumour testing, second opinions and explore different options that way. Without this we would also have had the 6 months they suggested rather than 3 years.

As much as I appreciate the ‘stay away from message boards’ are coming from a kind place, it is very isolating and I feel a bit silenced, sorry - I do know that’s not the intention but the thing with message boards is this one is for parents, mostly female, many who know a bit of what I’m going through. I’m not looking for or needing exact predictions it’s more the awfulness of dealing with this horrible situation and somehow managing normal life as well.

BIL outlived his diagnosis by three years too op.

It would be a good idea to get finances in order, and ensure you have a viable plan taking into account the worst case scenario. Denial was an issue for us too, and left SIL with all kinds of problems afterwards. Also anything he would like to write to the children/you/others should be done sooner rather than later. You can file it away. BIL was doing his the day before, and didn't finish which was very sad.

Plan for the worst, hope for the best.
Get some proper counselling in place for everyone. There is plenty of support out there, use it.

I am so sorry op - no one wants to be in this position, but treaments to extend life are appearing all of the time, and working. You have every reason to be hopeful that the doctors will do all they can for him

I totally agree. The message boards were also a lifeline for me. I ended up on a board which then spun off into a probate FB group with some wonderful women from all over the world who have been incredible supports and I’ve met a few of them

The shock and loneliness is truly hideous and don’t underestimate the shock of knowing that everything you thought you knew is being thrown up into the air in a way you never dreamed possible.

It’s nothing like a parent or a friend getting ill, it’s absolutely unique and petrifying when you’re a young family with young children and get all the support you can from people walking your shoes

I also found messageboards a good source of support and information both when my husband had terminal cancer and I went through my own cancer.

It is (and I'm sure you know this op!) important to remember that they do tend to have a slightly pessimistic slant as people tend to post more about side effects etc that they're struggling with - it made me worry hugely about a particular area of my treatment which in the end was a breeze.

My husbands cancer was of a different type from your husbands. The thing I found hardest was all the uncertainty. It becomes impossible to plan any aspect of life as you don't know when the situation will change. You end up living completely and utterly in the day-to-day.

Practicalities - wills, power of attorneys, and a conversation about your husband's wishes (Macmillan can help with this). Do you have family or nearby childcare available on an ad hoc basis? There were quite a few hospital admissions nearer the end and I'm glad I was able to go with him as he wasn't always in a fit state to advocate for himself.

Have you told others around you yet? You may well get lots of 'if I can help in any way, let me know'. Do let people help - even if it's just taking the kids for a couple of hours so you can scream/cry into a pillow or spend some quality time with your dh. You've all got a hard road in front of you and you need to look after yourself.

I'm so sorry you're going through this op

I don't have kids so thankfully didn't have that to deal with, but I know hospice outreach services and Macmillan nurses can point you to some resources in how to explain things to them, and support for if the worst happens.

Thank you. I don’t actually ‘mind’ pessimism because it is no worse than what I’d anticipated. To be honest, I was semi expecting DH not to make Christmas and a lot of the replies are more positive than that.

The uncertainty is actually worse than anything. I would actually like to know if we only have six, twelve, eighteen months; what do I do about work, how the hell am I going to manage totally on my own with two very young children, moneymoneymoney (DH is insured and I’ll have a lot of money in the first instance but talking about it feels horribly as if I am dooming DH) sorrow and sympathy for DH, worry for the children, my own energy levels are so low and managing them this summer has been hard, DHs mental health; my mental health … it’s all jumbled in!

Hopefully we’ll get more answers today. I’d booked my children in for a maze and we can’t go, I’ve given the tickets to a school mum though so I’m sure her little boy will love it.

Thinking of you @isthisaplum and hope you got some answers at the appointment

Thank you. To a large extent we’re still waiting. They have checked for mutations with another biopsy so need the results of this before a treatment plan.

The good news is that DH had radiotherapy about ten days ago and it’s just started to help. He actually slept in a bed last night!

This summer has been challenging but it’s a) nearly over and b) my three year old is getting so much more independent, it’s great. I’m sat in a role play cafe now contemplating getting a hot drink as they are playing together nicely!

I'm so very sorry you are facing this OP. If it helps to know, a family friend of mine had cancer that started in soft tissue and spread to her bones and beyond and she lived 5 years following her diagnosis, and much of this time she was up and about; going on holidays and living her life. The end was quick when it came. Sending you so much strength.