Advice and Support on Dad’s lung cancer

[FSteph]

Hi there,

I’m sorry for creating a new thread on this topic - I know there are similar ones out there, but each case is so different and I suppose I hoped someone might have been through something similar and be able to advise.

A few weeks ago, my dad went to A+E with some dizzyness and involuntary hand jerking. He’s had a stoke in the past so we all thought it might be a TIA of some kind, but unfortunately a scan showed a tumour on his brain, and a further body scan confirmed lung cancer that had spread to the second lung, liver and brain (single met there at the moment).

My dad is 72 and already suffers from kidney failure (on route to dialysis but not there yet) but is otherwise a totally able person. 72 these days just seems young and he’s not someone who looks or behaves ‘old’. Anyway, he had a biopsy around a week after the initial scans, and my family and I were all holding our breaths until his follow up meeting today where we thought we’d get a full diagnosis and treatment plan. However, my mum and dad were quite shocked and upset this morning to learn that there were no results to be discussed. Instead, they took some blood and have been asked to come back in another 2 weeks to talk through the biopsy findings. I suppose when we’re already feeling pretty floored by the cancer news, this was just such a disappointment as we all thought there would be some kind of relief in finally having clarity, even if the news wasn’t brilliant.

I guess first of all, I’m wondering if anyone else has had a wait like this, or if it’s reasonable? But more importantly I’m asking whether anyone who’s had a similar diagnosis can offer any advice on what we should be expecting. I’ve been googling like crazy and trying to read all the forums I can to manage my expectations and educate myself, but it’s so hard to know what the prognosis here is and what treatment would look like. So far my dad is on steroids to manage the symptoms of his brain met, but that’s it. And I should say, worryingly since this all happened just over 2 weeks ago, he’s suddenly in a lot of pain and is now almost unable to hold things or dress himself properly because of his hand. It’s quite frightening how quickly it seems to be advancing in that sense. They have said that any treatment is his choice, which I take to mean it might make him even more uncomfortable, but again, this is me reading between some very blurred lines.

Sorry for the ramble and any advice greatly appreciated.

S x

Sorry about this diagnosis. You might find Macmillan helpful? Lots to take in and deal with. This is secondary cancer you are dealing with which can make treatment complicated.

I’m really sorry about the news and I apologise for being blunt, I wished someone said it to me few months ago when I was in your position with my mum ,10 years younger than your dad.

Please be aware that IF a treatment is offered it will most probably be for symptoms management and not curative , it will be down to your dad if he wants to go through with it or not . From my knowledge the liver and kidneys must be in fairly good condition when we’re talking about chemo as these organs process the chemo drugs ,and your dad’s unfortunately are not. His age , previous health issues , several mets and the fact that he’s in pain already is not good at all.

My mum was fit as a fiddle and never been in hospital before, never had any treatment for anything or be on any prescription drugs , she had an aggressive form with mets ,she was offered radio ( made no difference and gave horrible symptoms) , the cancer ruined her kidneys (previously very healthy) and the fact that she developed quite severe pain her fitness level was deemed not good enough for chemo ( she would have refused it anyway). I lost her in 7 months from first symptom / 2 months from biopsy results and 5 days from when all treatment was stopped.( fluids, blood transfusions etc)

Please forgive me if my comment upset you ,it’s not my intention,I know what you’re going through, I’m very realistic , and as I said before I wished someone would have said it to me instead of giving us false hope.

Thank you both so much for your quick replies. I defintely plan to get in touch with MacMillan - I think it would be a real benefit to my whole family. It’s almost as if I don’t quite believe this is happening yet and that feels like a very real step to take.

And Pompey 38 - I am so sorry about your mum. That sounds incredibly difficult, especially to lose her so quickly when she had been in such good health. Please don’t worry about upsetting me - I’m also very realistic and with all the research I’ve done so far, I had a feeling this kind of timeline might be what we’re facing, it’s just so difficult to begin processing without a doctors say so for some reason.

I’ve never seen my dad scared, or vulnerable really, so that’s very hard to take and I can’t stop worrying about what lies ahead of him and how he will cope / how we will cope seeing him suffer.

I’m trying very hard to be strong for my mum, brothers and my own 2 very young kids, but finding it all incredibly tough and worry we’re only at the start.

@FSteph
Sorry to hear this.
This is the link to MacMillan lung cancer forum.

community.macmillan.org.uk/cancer_types/lung-cancer-forum

Also there should be a Maggies or MacMillan centre in your local area who will be able to give support in person.

www.macmillan.org.uk/in-your-area/choose-location.html

HTH

With my mum, it took so long to get any test results back that it was more or less the week she died that she knew for sure exactly what it was.
I think that made it a bit harder for her to accept.

I'm so sorry you're in this situation and I hope you have the support you need around you. It's a tough thing to go through.

My mum was in her mid sixties and it was quite surreal honestly.

Thank you for those links @FrillyKnickersAndNoFurCoat - and also for teaching me that you can tag people!

And im so sorry to hear about your mum @SuperLoudPoppingAction. The wait is truly torturous, I can’t even imagine how frustrating and upsetting that must have been. I hope you’re okay.

My dad is having good days and bad so far, and because he still seems largely himself, I’m just not sure anyone else in my family quite realises the reality of what we’re facing. I absolutely don’t want to cause more upset by sharing this kind of discussion, but also feel so lonely and anxious thinking the worst while my siblings assure themselves and each other that things might not be so bad.

thank you again for replying - it’s such a comfort when I’m feeling so low.

my dad also has lung cancer

out the blue

diagnosed last sept age 75

he broke his leg and that was only sign - at diagnosis we found that not only did he have lung cancer but it’s spread to legs hip pelvis and shoulder - so already stage 4

it was the bone mets which caused his leg to break or we’d not have known he had lung cancer

that was year ago and he’s doing really well on chemo and immunotherapy

i really wish i hadn’t listened to everyone who told me stage 4 means life expectancy of weeks to few months

evryone told me it would advance quickly and i was like you, feeling like everyone was oblivious, i was googling and felt everyone else was in denial

but google is massively out of date

immunotherapy is recent - dads only got approved january this year and whilst it won’t cure, i’m certain few years ago with his stage and a broken leg and hip, he wouldn’t have been here

dad still goes out everyday, looks fine, goes to the pub and frankly is completely riddled. He’s in some pain some days but manages morphine

once he gets morphine he’ll feel better

everyone is different

muat say the diagnosis was disgustingly long and eventually i will take it further but now isn’t the time to do that

even now treatment side with nurses etc is very good but communication is bad

once they get a plan together it all moves fast but it was couple months before they started treatment due to the different types of lung cancer - NSCC goes for molecular testing which takes 6-8 weeks for results

i was same as you, fuming it took so long but there’s lots of tests before treatment starts - think from biopsy to treatment was 2.5 months as it takes a while to find the type of lung cancer to target it properly

for now please try to take one day at time and treat google with caution

cancer treatment has moved massively and stage 4 patients can live a long time

my friend has stage 4 lung mets and was already in brain last summer

right now she’s had chemo and every tumour has shrunk and it’s been over a year! she’s totally fine, holidaying etc

she is being monitored - she is not having treatment currently as it’s stable - she’s not cured but she’s doing ok (age 60 tho)

Hi @Alwaysanotherwine - thank you so much for your messages. I am so glad to hear that your dad is doing so well and that he’s managing his symptoms. It’s really nice to hear a positive story.

do you mind me asking what your dad was like in the lead up to treatment starting? My worry is that in the 4 weeks since finding out about the cancer and while we wait for all the results, my dad has deteriorated massively. He’s sleeping most of the day, barely eating (as of yesterday) and having seizures from the brain mets. I worry that being so weak now coupled with his poor kidneys, he won’t be able to withstand chemo. It feels like things have just gone downhill so quickly and I don’t know if it’s wishful thinking to imagine they can improve at this point.

thank you again. Even if my dads story isn’t as positive, I’m so, so glad your dad’s story is better x

hi

well before diagnosis he was fine - had cough and chest pain but had had a clear x-ray

but he fell and broke leg and hip and that’s when they found bone cancer and then later realised it was lung mets

it was in small airways so hadn’t been clear on any x-rays apparently

his hip left him chair bound for few weeks and even now he’s unsteady

he was coughing and in pain and sleepy but the sleep is very much side affect of morphine so if your dad is on morphine that’s likely why he’s so tired

tho i’m not sure if my dads kidneys etc are affected but i know his endocrine system is affected as he has to watch his fluid intake each day and monitor every drop he drinks even down to fluid type foods like yoghurt

dad also lost his appetite but we’ve kinda encouraged him to eat lots of protein rather than a small meal of 4-5 ingredients but to be honest he’s just ate well when ok and during treatment, he ate less

but all depends on how strong your dad feels

my dad has told the consultants straight he wants to fight and so they agreed to treat - tho it’s been cancelled at times when his bloods have been bad

it all depends on the type cancer as chemo can be tablets, through blood etc so not all needs them to be fully well

theres so many treatment types

my dads chemo has caused hair loss but honestly he’s fine - no side effects - whereas years ago i remember my uncle vomiting constantly

my dad takes anti sickness and hasn’t been sick once so think it’s all about better management now

There are so many more options now

immunotherapy is great if they are eligible

best advice really is to wait and see what they say - go with your dad as my dad struggled to retain info -they may offer other treatment which stabilises they rest of his symptoms

its a horrible time

honestly i was fuming at the delays and lack of urgency but the tests do take time

But they will want him to be well

my dad has bloods 2 days prior to every treatment and they cancel if he’s got any signs of anything in his blood

my dad is palliative - i know we are on borrowed time but i guess some people don’t get extra time (accidents/ heart attacks etc)and i’m at peace with that - some people won’t ever get chance to say goodbye or spend more quality time so i look at everyday as being a bonus

but last year was a horrible couple months in the panic of hearing news like stage 4 cancer so i totally get how you feel
xx

@Alwaysanotherwine thank you so much for all that info. I really appreciate it. Sadly my dad is just getting weaker by the day, or maybe even by the hour, but we have Marie curie nurses coming in now and some carers helping. He hates it, which is heart breaking, but it’s necessary as we can’t manage to lift him for everything on our own.

our appointment is tomorrow with oncology for pathology results but at this point I’d be surprised if any treatment is offered. I think hearing that might break him but I really do feel like we’re losing him very quickly.