Very early days into a lung cancer diagnosis for my dear dad

[SpringGlade004]

Hi, I’m wondering if anyone can shed any light (truthful is fine, I appreciate that this is not a good situation) on what may lie ahead for us treatment and outlook wise. My Dad has had it confirmed from scans that he has lung cancer with a single bone metastases in the pelvis. We are awaiting a biopsy to distinguish the type and then we will be seeing the consultants re a treatment plan but I’m trying to prepare myself mentally and also be ready with good questions for the consultants. Does anyone have any experience in this and/or any advice on things I should ask please? My dad didn’t have any lung symptoms and the only reason we knew something was wrong was that he had terrible hip pain that unfortunately his Doctor misdiagnosed as sciatica for almost 6 months. Thanks in advance if you reply.

I am sorry, it's a scary diagnosis, my mum had it. She also had no lung symptoms so it was a huge shock.Try hard not to Google and wait for the biopsy results. Once they know what type it is, things should move quickly. I know you want as much information as possible now, I was exactly the same, but they need to give you the full picture first so you know what you are dealing with. It's all horribly confusing at first but it's very strange how quickly you become familiar with the vocabulary.
Make sure you look after yourself too during this time, it's incredibly stressful

Thanks for your reply and kind words @Theresacatinmykitchenwhatamigonnado . I’m sorry that you have walked the same path. I know that you’re totally right, they need to know what they’re dealing with to be able to go forward in the best way. I also know this can take various twists and turns. I think it’s just hard because the time between being told that it’s cancer to not having a date for the biopsy yet is making it feel like any treatment is still quite far off and it’s just so hard watching him in so much pain with his hip. It is also giving me too much time to go over all the possible scenarios in my head. I also know lung cancer has a poor outlook and was hopeful that some people might have some less bleak experiences with it even at this stage. 🤞🏼

I would wait and see what the dr’s tell your dad… not every person wants to know specific details and it can be hard if you have a loved one who doesn’t actually want to know too much. A palliative diagnosis can mean many things, there are many treatments these days that allow people to live with cancer even if there is no cure.

Thanks @Llanty , I totally agree. We won’t be asking for a ‘timescale’, I think I’m just more hoping that there’s some indication that things aren’t hopefully completely bleak or imminent and that there’s things that can be done to make him mobile and have some quality of life still. A bit of light in the darkness I guess.

there are specific treatment options for bone mets dependant on location such as radiotherapy, bone strengthening meds plus he may be offered chemo or other systemic options …and immunotherapy is the newest, exciting treatment for non small cell lung cancer that is improving life expectancy. The biopsy will bring better clarity of his options . It can be very overwhelming I know .

My dad was diagnosed with stage 4 LC after 6 months of a sore neck (turned out to be a tumour). He was a non-smoker, had no symptoms and died 3 years after diagnosis. As far as I can remember, the options are better if you’re a smoker as smoking causes certain mutations that drugs can more easily treat. My dad did have a genetic mutation in the cancer though and was treated with a once a day pill for a while (tarceva, I think). Then when that stopped working, he was put on immunotherapy (nivolumab which failed spectacularly).

he died 8 years ago next week, so treatments have probably moved on since then.

sending you love, it’s an awful time and my heart goes out to you.

Thanks @Llanty, that’s good to know. I’m just hoping that he falls into the category of there are things that they can do 🤞🏼

My dad was diagnosed with stage 4 small cell lung cancer after he collapsed one morning. His consultant told us she originally thought 6 months max, he managed 3 years.

If there is a Maggie's centre near him, they might have specialised lung cancer support sessions. I bribed my dad into giving it a try and he found them extremely helpful.

Hi Op, I'm very sorry about your dad's ill health.

My own wonderful dad was diagnosed at the end of 2018. He was suitable for immunotherapy and was at first offered that plus chemo. However as he had a lung drain inserted, the oncologist advised against chemo due to risk of infection.

So he went ahead with immunotherapy and for at least 18 months the tumours didn't really grow and he still had a reasonable quality of life. Eventually the tumours grew so he started having chemo. Chemo was rough and he ended up in hospital a few times with infections. Eventually dad passed away in 2022.

We never asked for a prognosis, just took each day as it came. But I would never have thought we'd have had dad for almost 4 years after his diagnosis.

I say "we" as we went to all appointments with dad and he introduced us to the doctors as his "Board of Directors". That always made me smile.

I feel sad that the pandemic took away memory making time from us as dad had to shield, but that is what it is.

So take your lovely dad out for a pint and a pub lunch when you can. All the best OP ❤️

Just to say also, whilst the pandemic meant we could no longer go to appointments with dad or visit during his hospitalisations, the NHS never missed a beat. Every appointment and treatment continued. Forever grateful for that.

At the end of his life, the District nurses who came daily were absolute rock solid superstars. They made it more bearable than it otherwise would have been and dad loved them.

Thank you for your message@bunnypenny . I’m so sorry to hear your Dads story. I hope in those few years you had with your dad after diagnosis that your dad was able to have good quality of life at least. I never realised until now how often lung cancer is diagnosed at a later stage. 😔

Thanks so much for your message @StMick , it actually made me quite emotional. I could feel the love you have for your Dad in your words and I could very easily hear my Dad call consultants his ‘board of directors’ as well. Maybe a similar personality and sense of humour. So sorry this happened to you all (we’re very much facing this together as you did) but thank you for sharing that it might not mean imminent darkness and there may be time to still enjoy some nice times together. I absolutely can’t wait to be able to hopefully take him for that pint and pub lunch!

Thank you for your message @SkeletonBatsflyatnight. I haven’t heard of Maggie’s so I will definitely look into it. I think my dad would also need bribing as yours did but it’s good to know that he got a lot of comfort from going. Thanks again.

It’s such a shock as my close friend was diagnosed 2wks ago with lung cancer, and sadly it’s spread to the liver and brain. Symptoms dismissed as menopause. As she was admitted to hospital (due to the brain tumour causing confusion) she’s had her biopsy already, and is waiting to see if any treatment can be given. Her daughter told me 2 months with no treatment and they are leaning towards palliative care only. I suspect as its spread so much already. No signs of lung cancer, not a cough or anything, which i’ve now read is common. I am so devastated by it all, it all just feels so unfair. We are planning to spend the weekend together and I am now trying to educate myself on seizures as she has started to have them.

Wishing the best for you, your beloved dad and your family @SpringGlade004 ❤️

So sorry to hear this @Zanatdy . How frightening that your poor friends symptoms were dismissed for menopause. I didn’t realise how often lung cancer can be free of all the symptoms that we’re told to look out for until it is much more advanced. Sending you all strength at this time.

My mums just been diagnosed with lung cancer too. No symptoms of the lung cancer, she got a CT scan after having a sore neck for 2 months and it's spread to the neck bone. Just wanted to say you're not alone in this horrible and heartbreaking time. Consultant appt tomorrow will hopefully shed light on treatment options 😔

So sorry you’re in a similar position @EmmaM84 . It’s so cruel to go from what you think is something fairly innocuous to something so serious. Thanks for your message of not being alone, I hope you feel that way too. I hope everything goes as well as it can for your Mum today. Sending virtual hugs