Can anyone tell me about lung cancer?

[borntohula]

Found out recently that dm has it. I know very little about it and don't want to bombard her with questions. She became unwell last year and deteriorated rapidly and can now hardly walk. Diagnosis is very recent. She starts chemo next week. Everything I've read sounds bad. Does anyone have any experience?

*very best

I hope DM has someone to attend consults with her. It's really hard to take in all the info and think of the right questions when you;re still in shock from the diagnosis. Best to take a notebook and write down every thing you want to ask,and every thing you;re told; brain tends to freeze.

For some people, talking to friends and family about their cancer and treatment can be really helpful to them; the repetition helps them get their head round it. So, don't assume she won't want to be asked, or to tell; it might be exactly what she wants and needs. Keep ckecking with her. For your own sake, make sure you too have someone to talk it all out with. (Macmillan can provide this ).

Macmillan (cancer charity) offers great information and advice , all free, contact them online . If you or your mum live near a Maggies Centre (look online) I recommend them too, they support families as well as patients.

My MIL had small cell lung cancer and it did completely take her mobility and she ended up with a wheelchair for the last few months. It also affected her neurological functions as it spread and was in her brain and spine and hips.
Did anyone go with her to the appointment? They should have referred her to Macmillan or a local service and you should be able to speak to them if your mum gives consent. She will need lots of extra help and support especially if it is small cell.
Does she live with anyone? I dont think she will be able to live alone if it is small cell. Someone really will need to go with her to all consultant appointments and be her advocate.

Don't mean to be negative but DP died from lung cancer last week.
He had refused to go to the doctor and when he finally went it had spread to his liver and brain so there was nothing they could do.

I would suggest speaking to Macmillan nurses (look at their website). They are very helpful and have a section for families who are living with or supporting a sufferer.

He went downhill very quickly after diagnosis. As others have said it very much depends on the individual. DP had non small cell cancer which is less aggressive but the oncologist told us that it was acting aggressively in his body. He was stage 4 by the time we got the diagnosis. Sadly he also had a family history of lung cancer and had lost his mum and his older brother to it.

It's a horrible illness and I wish you all the best. Take each day as it comes. If they think she is well enough for chemo then that is a positive as DP didn't even have that option.

Are you listed as your DMs next of kin? If so the medical professionals should speak to you.

for you and your mum.

PM me if you want to ask anything else because I know how devastating it can be when you don't really know what's happening.

You said it sounds like it’s neurological. Most lung cancer metastasizes (forms secondary tumours) in the brain and/or the bones. If this has happened and your mum has developed a tumour/tumours in her brain, depending on where they are, they can affect speech, cognitive function, coordination, personality, etc....
Be aware that all of these things can also be affected simply from the lack of oxygen that is due to the growth of lung cancer as well, so your mum may not yet be at this stage.
When my mother was diagnosed with lung cancer and COPD, she also tried to hide her diagnosis. I don’t think she was so much in denial, but I genuinely think there is a sense of shame/guilt associated with such a diagnosis, perhaps that if they hadn’t given up smoking sooner, etc.... I am certain that you are not blaming your mum, but she can’t help blaming herself. It must be an awful thing to carry with you.

@feellikeanalien I'm so sorry about your DP.

She lives with my dad luckily and he takes her everywhere. He must be scared too.

@Disillusioned11 just need to correct the fact you posted. Most cancers in smokers are still non small cell cancers.

@feellikeanalien so sorry about your DP - cancer is a bastard

My dad had lung cancer, he began experiencing pain in chest, not coughing. He had a weekly course of chemo for about 6 weeks which he didn’t seem to have any problems with. They said the treatment was successful, but whether that meant it was gone I still don’t know, but he had a good year following treatment. He died 18 months later, he was in his late 80’s, when I think the mind and body just gave up.

There are two main types small cell and non small cell, the later is better, for want of a better word, and is more treatable the former is very aggressive and a short disease unfortunately.

Does your dm have any other help but your father? It would be worthwhile looking for other help and getting that in place as it will wotherwise be a lot of work for your father and often his needs can be overlooked. he will suddenly become carer, form filler taxi driver to hospital and yet himself still a husband and person with needs. Its really important to look after your dad

Sorry about your mums diagnosis.
MIL was diagnosed stage 4 at 65 years old, had chemo then immunotherapy (while still continuing to smoke the whole way through) and lived a further 3.5 years.

I think you'll need to convince her to let you support her despite Coronavirus. I helped to care for an aunt with lung cancer. She developed panic attacks because of the sensation of not being able to breathe. Her nurse said imagine you are drowning and gasping for air - that's how she feels 24 hours a day. She will probably need an oxygen machine at home. Sipping cold water constantly helped my aunt with breathing.
I wish good treatment for your mum.

Hi @borntohula my MIL was diagnosed with lung cancer nearly 3 years ago now. I was very worried at the time and googling prognosis on the internet was very grim.

MIL has responded well to chemotherapy initially and is now having immunotherapy and responding well. I would say we are in a position at this stage where they are managing her condition. She has a number of side effects from the treatment, but has a good quality of life at present.

I wanted to post to say I had terrible anxiety about my MIL dying within a short time frame and in our case so far she has managed with treatment. I hope that gives you some reassurance that there are treatments available that can really help extend peoples' lives. I appreciate this is not for all cases, and does really depend on the type of lung cancer and prognosis given.

@ritzbiscuits and @niceupthedance somewhat reassuring thank you. I never expected she wouldn't live past her 60s but several years (with a good quality of life) is better then several months.

I'm hoping she will see coronavirus as a lesser threat I suppose but it might not be for her? I'm at work and mixing with a lot of people, I haven't been in their house since March and she doesn't see the kids either at the moment. I'm torn between understanding exactly where she's coming from but also thinking life's too short to go without the things and people you love.

Hi there, I'm sorry to hear about your DM. I work at Roy Castle Lung Cancer Foundation and we support those affected by lung cancer. We have lots of information on our site including the different types of treatment now available. We also have a helpline with lung cancer nurses who can answer any questions you might have and our dedicated lung cancer forum. On our site, you'll also see lots of stories about people living with lung cancer. It is not the disease it once was. There are many new treatments now available and people are living well and for longer even with late stage disease. I hope some of this will help. Kind regards, Rachel

My dad had lung cancer about 5 years ago. He had part of one lung removed, no chemo. He has been okay since and still with us.

Best wishes for you mum

@borntohula re: your point about interaction with others, my MIL shielded until the Summer, but has since decided to see both us and her grandson. She got so depressed not seeing us, she decided that with a reduced lifespan, it was better to continue to see us. Even though DS is still back at school, I think she is likely to continue to see us through the autumn/winter. She knows the risks but its her decision to make.

@borntohula ask your parents what type she has. And if the doctor has given her a prognosis. My MIL died this year from small cell lung cancer and our time with her was very limited and precious. Unfortunately hers was always a terminal diagnosis. You need to be more informed to weigh up the risks. If your mums type and prognosis isn't positive then I think they need to tell you so you can decide whether to see them if she is on limited time. My MIL really tried to protect DH and I , but ultimately we needed to be able to help her and FIL as she became incapacitated and very very poorly for the last few months. They needed our support and we would not have stayed away.

My next door neighbour has it and is now terminal. She is only 52. She started with some innovative therapy at the beginning and that increased her life 5 years but it's come back and it has spread to her spine and her bones are crumbling because of the tumours in her spine. It has a very poor prognosis I'm afraid, just 5% ish survival rate. I'm so sorry for your DM it's a dreadful disease.

Ask is she can go on a drugs trial. The trial where they give meds to start your own immune system fighting the cancer, may work for her.

@borntohula how are things this week? Thinking of you

My mum was diagnosed with lung cancer when she was 19. She had an operation to remove 3/4 of the lung. She went on to live until she was 87. Sending you & your mum huge hugs & best wishes.

Hi
My mum had lung cancer. She is still alive.

She was diagnosed in Jan 2019.
Had op to remove the affected area (top 5th of right lung) and then (after getting sepsis whilst in hospital) started Chemo 6 weeks after the op.

Chemo was a mixture of Vinoralbine and another which I forget the name of.

Mum didn't lose all of her hair but she thinned to about half as much.

Her chemo was 2 consecutive Fridays and then a Friday off.

Her chemo went in through her hand.

All side effects are managed by the hospital so no pain or nausea should be expected as you get a direct dial number to the helpline who will prescribe other drugs to help.

My sister and I spent our Fridays with mum
On the treatment unit. Possibly one of the happiest times, odd to say but it was a very cheerful environment and not at all sombre.

After 14 weeks of treatment, in June 2019, my mum rang her end of chemo bell.

Mum has since had check ups and nothing else has been picked up. (Fingers crossed)

If you can, go with your Mum, this will support both her and your dad. It's a lot for one person to manage. I was so grateful I had my sister and I know she felt the same. Our Dad isn't around.
Our husbands were amazing but it's not the same as a blood relative.
I can't stress this enough. Just being there.

What stage is she? It can differ depending on stage, if it's operable and how well she responds to chemo.

Ps
Sending you a big hand hold.
This is the hardest part, processing it. Once things get going it's more manageable.
I'm sorry for your mum and your: your family.
It's not anything I would wish in anyone. But there is often light at the end of the tunnel.
I hope your mums outcomes are positive.

@smartiecake thanks for checking in and thanks everyone for your replies.

Still getting my head around it, seen her today and she seems ok, if tired. Apparently it's small cell lung cancer which i gather is pretty shit. But apparently it's also localised? Anyway, she's keeping positive.