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Original poster

just found out my ddad has lung cancer. Can someone please talk to me about it?

29 replies

acrabadabra · 18/12/2013 21:33

He had a cat scan this morning and by this afternoon his gp had visited him at home to give him the diagnosis.

He's been told he should see an oncologist before xmas.

He has been losing weight for a few months. Struggling to walk any distance for maybe a year.

It's not good is it?

Lost my mum 2 years ago just after having my dd. Thought my dad would last forever.

OP posts:
CarolineDeWinter · 18/12/2013 21:47

So sorry to hear you lost your mum.

Surgery (and therefore cure/management) can be an option for lung cancer so don't give up hope.

WipsGlitter · 18/12/2013 21:51

I'm so sorry.

My dad had lung cancer. He was a very heavy smoker 50+ a day. He too had been losing weight but we didn't really notice. I'm afraid it wasn't a good outcome. He wasn't offered any treatment.

However, my sisters mil had it and did have treatment that prolonged her life by a few years.

magso · 18/12/2013 21:52

I am so sorry. It must be a terrible shock for you all. I think the early days of diagnosis when you don't have a treatment plan are particularly difficult. I have no experience of lung cancer (although I have been through the scans and lung biopsy which turned out to be something different).
Hopefully others will be along to chat soon.

dinkydoodah · 18/12/2013 23:17

I am so sorry. I have been through this with both my parents and I know the horrible shock when you first get the diagnosis. My dad had stomach cancer and was offered surgery and chemo. It was early stage and he had his whole stomach removed. His prognosis was always good and he is considered in remission 7 years on and still going strong. My mum was diagnosed the following year with advanced small cell lung cancer, inoperable and therefore terminal. We were devastated. She was given just months to live. She opted for chemo despite the dr saying that it was probably going to be ineffective. That was 6 years ago and she is still with us has a reasonable quality of life. The doctors are amazed but do say that it is not unusual for some people to defy the odds. My advice is never give up and take any treatment offered. I am positive the chemo sent the tumour into remission. It is still there but dormant thank god. Best of luck to your dear dad, I hope his treatment plan goes as well as my mums.

Original poster
acrabadabra · 19/12/2013 08:16

Thanks all. Sorry I posted and never returned. Had to go to bed as was suddenly very tired.

I'm going to see him this morning but so worried I'm going to break down. When I spoke to him on the phone last night the call lasted about 90 seconds as I was crying and didn't want him to notice.

He's always been a heavy smoker so I guess it wasn't a total shock. His gp had recently given hom antibiotics for a suspected lung infection as there had been a shadow on his xray. But I wasn't sure that was it.

What do I say to him. We don't do emotions in my family.

On top of it all I'm feeling so guilty. I haven't been able to enjoy my Dd's birthday as my mum died so soon after she was born and now xmas is going to be forever tainted too. I'm a bad person to be so selfish.

OP posts:
WipsGlitter · 19/12/2013 11:26

You're not selfish, it is hard. I would try and get through the next two weeks and take it from there. Do you have any siblings for support?

Original poster
acrabadabra · 19/12/2013 12:38

He has an appointment tomorrow. My sister and I will go along too.

Hopefully we'll find out more about his prognosis.

What should we be asking?

OP posts:
carolinewinter · 19/12/2013 12:41

Try to take comfort in the fact that both of your parents have met your Dd. Heartbreaking though it is, it is the natural order of things that the older generation die before the young so try to celebrate your DD's future birthdays as your mum lives on through her.

If you find it hard to talk to your dad then write a simple letter telling him you love him and whatever the future brings you will face it together.

WipsGlitter · 19/12/2013 13:15

I don't really know what you should ask. Probably about treatment options and palliative care options. What does your dad want? Does he want treatment? How old is he?

Original poster
acrabadabra · 19/12/2013 13:21

I don't know what he wants and I doubt he will have an opinion beyond what the doctor tells him. He's 71 and thinks they know what's best.

I'm not suggesting that they don't but I'd rather not have to become a cancer geek to know what they're not telling us because they have already decided.

Not explaining that well.

OP posts:
magso · 19/12/2013 14:00

Hopefully they will give you some information. There is a charity specially for lung cancer - the Castle.org one . The British Lung Foundation have lots of information too. There are information sheets on tests such as CT scans, bronchoscopy and other lung tests. I found both of these charities quite good for information and understanding terminology.
First the specialists are likely to do more tests ( if biopsies have not been done already. Then once they know what they are working with they will come up with a treatment plan.
Its a good idea for someone to take notes as it is difficult to remember everything.
Hoping the news tomorrow is as good as it could be.

Musicaltheatremum · 19/12/2013 22:44

Also ask if there are any trials going on. You may get some of the newer drugs then.

rootypig · 19/12/2013 22:50

So sorry acra.

Take a notepad to the hospital and either you or your sis jot things down so you can look stuff up later - there will be lots of jargon and a lot to take in. Ask as many questions as you need to, as long as your dad is ok with it.

dinkydoodah · 19/12/2013 23:44

I would ask what type of lung cancer it is. There are two main types - small cell and large cell. Small cell is the most aggressive but responds well to chemo. Ask if surgery is an option and how soon it can be done. I asked about the prognosis but only when I was alone with the doctor. I hope all goes well for your dad.

Original poster
acrabadabra · 20/12/2013 18:56

Saw the consultant and the lung cancer nurse today. Dad's to go for a biopsy on Monday or Tuesday. The cancer has dpread to his lymph nodes and they'll get a tissue sample from one in his neck. Then they'll know what type of cancer it is.

The doctor didn't give any prognosis other than it is incurable. I guess the fact it's spread isnt good.

Then I came home to a phone call from nursery. My dd has chicken pox.

Someone is having a laugh.

OP posts:
rootypig · 21/12/2013 09:26

Hugs Acra. What a bag of shite. How is your dad holding up? Do you have someone to talk to?

Original poster
acrabadabra · 22/12/2013 18:13

Dad's been ok last 2 days. His pain is finally being controlled so he's had a couple of nights unbroken sleep. His gp had him on paracetamol and refused him anything stronger. Hospital doc seemed concerned that he's been in agony and left to suffer.

They prescribed tramadol,gabapentin and steroids to try and boost his appetite.

He seems in reasonable spirits though and he is eating more and sleeping which he says is his mainconcern. Was all he really complaied about at the hospital.

But, chicken pox is dangerous so he might not make it for xmas dinner along with my dsis who's working and dsil and her partner who have an 8 week old.

Wish it wasn't xmas at all. Too many other things getting in the way.

OP posts:
rootypig · 22/12/2013 20:38

Am glad he has effective pain relief now. The timing of the chickenpox is just dire, this stuff always seems to come by the shovelful Sad

I hope you do get some nice time with your DC amongst it all Thanks

Original poster
acrabadabra · 22/12/2013 22:05

Thanks rootypig

I think xmas day will be spent in the car visiting which is the thing I try to avoid most by having everyone come to ours. Mainly as I'm lazy usually working right through.

I'm so sorry for all of you who have had to deal with this and alsoo so grateful that you have posted here. It is still a shitty situation but knowing there are people who have been in my dads shoes, and my own, is more helpful than you'd ever think.

Thank you x

OP posts:
dinkydoodah · 22/12/2013 22:24

Acra, glad to hear your dad is more settled now. I just wanted to add that my mum was and still is very up and down. I remember the panic in the early days when she appeared to be going downhill but then after a few days she would go back to 'normal' . She is still like this now as she catches everything going. I find keeping her hydrated , especially when her appetite is poor, is very important. I also make sure what little she does eat is nutritious with the odd indulgent treat thrown in. Hope your DD is well enough to enjoy Christmas Day and that her chicken pox is on its way out. Best wishes to you and your family.

Original poster
acrabadabra · 23/12/2013 14:56

Thank you dinky

Biopsy is tomorrow morning then I'm going to try and forget about it till after the weekend. Presumably the results won't be back till next week anyway.

Merry xmas to you and yours Thanks

OP posts:
rootypig · 23/12/2013 20:43

Merry Christmas acra. You are doing bloody marvellously x

Shakshuka · 24/12/2013 17:00

My Dad has inoperable lung cancer. In his case, it had spread to the fluid around the lungs and caused such a large build up of fluid that one of his lungs collapsed.

The good news is that there is SO much more available than even 10 years ago. There are many 'biological' treatments which are easier on the body than traditional chemo and there's even talk of a vaccine becoming available. It's a serious disease but even if it's inoperable it's still treatable.

My Dad was diagnosed 18 months ago. I was freaking out at the stats - median life expectancy of 8/9 months! He's also 76 so no spring chicken. But he's still here and he's doing well. He has maintenance low level chemo every 3 weeks and will have to for the rest of his life - and eventually his cancer will become resistant to the current drug cocktail - but so far so good! He's weaker than he was and only has one working lung and has a few bad days after the chemo where he's exhausted and doesn't feel good but apart from that his quality of life isn't bad at all.

WipsGlitter · 24/12/2013 17:27

That's so trueshakshuka. It was over 10 years ago with my dad, I'm sure things have really moved on since then.

Original poster
acrabadabra · 07/01/2014 16:06

Just back from the cancer clinic. He's got 6 months. Maybe less. It is squamous cell lung cancer and has metastasised to the lymph nodes in his neck and chest.

He's going to start a course of palliative radiotherapy. Hopefully next week. Big backlog due to the holidays.

Wanted to ask if anyone has experience of telling small dcs (they're just 4.2 & 2.7). They see gd very regularly and, though I've said he's poorly, I want to explain it in a way they'll understand. When my mum died my oldest was just 20 months so it was much easier.

Any suggestions?

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