Controversial I know.....: But if... - Lung Conditions C...

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Controversial I know.....

Catwoman50 profile image
38 Replies

But if there is a 'better' lung disease to be diagnosed with, I am thinking lung cancer gives more hope than say nsip or uip and there is more treatment available and more is known about lung cancer,

I'm sorry if this offends anyone, but I am genuinely in the dark on this, and would value other opinions.

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Catwoman50 profile image
Catwoman50
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38 Replies
Toci profile image
Toci

There are so many variables - age, fitness, other health issues, severity/stage of disease. I wouldn't 'choose' to have any of them!

sassy59 profile image
sassy59

There isn't a better lung disease Catwoman. X

Katinka46 profile image
Katinka46

Very interesting. I am delighted when I see patients with cancer getting all the help, surgery, treatment that they do. And I would --- obviously --- not choose to be I their number. But I am also aware that 'Cancer' seems to dominate the health world as the worst that can happen. Hmmm..... Not sure. There are many here who have untreatable lung conditions who simply slide under the radar. To be fair some of these conditions are rare, have only a small patient group and so obviously they will not get the funding/help that would be ideal. Everyone --- if they haven't had cancer themselves ---- has friends who have. So it does deserve the high profile it gets.

Just wish there was more help for those who have less well-known, low-profile nasty degenerative diseases.

Tricky one....

K xxxx

Nottobad profile image
Nottobad

Not all cancer diagnosies are quick . My mum had cancer of the esophagus. And it took them a long time to diagnose it and when they did it was to late to do anything. X

Katinka46 profile image
Katinka46 in reply to Nottobad

Sorry to hear that, Nottobad. Very hard for her and your family.

Kate x

Nottobad profile image
Nottobad in reply to Katinka46

Thanks Katinka it was very hard. She passed away a few days after dx. But she is in a better place now. And we have very good memories to remember her by. X

Katinka46 profile image
Katinka46 in reply to Nottobad

Thanks for that. I'm afraid, in spite of all the concerns that doctors have not to miss cancer, it can still happen. I hope you got a proper apology from the doctors who messed up.

Kate X

Magpuss profile image
Magpuss in reply to Nottobad

Very sorry to hear that Nottobad. I was far more fortunate, I had cancer of the oesophagus but by sheer coincidence it was picked up very early on. I was very fortunate.

Nottobad profile image
Nottobad in reply to Magpuss

Thank you Magpuss. I am glad they picked yours up early on. All they gave my mum was a nose spray. And treated her for a cold. X

Magpuss profile image
Magpuss in reply to Nottobad

That's shocking, I had an an exceptionally good doctor at the time, anything that he wasn't happy about he had investigated, and he chased up test results personally, to avoid delays. He retired two years ago and I do miss him. The new doc's are a bit hit and miss, not too bad - but no match for him.

Catwoman50 profile image
Catwoman50 in reply to Magpuss

Very sorry about your family experience nottobad . A cancer diagnosis of any kind for anyone is truly devastating.

My original post was lung specific as to me there does seem to be some treatment options and knowledge of the disease that appears not to be the case for other little known diseases, as previous poster said. I am new to this board and still trying to find out what all this lung stuff is all about..

Take care everybody.

Billiejean_2 profile image
Billiejean_2

I wouldn't want any of those conditions, my preference would be to be healthy :) Oh, to have that choice !

There's probably much more funding for cancer then for lung conditions generally but then, that applies to so many illnesses.

At the BLF 'Meet the Experts' conference at Newcastle, last year, the first doctor who spoke, highlighted that whole issue. He illustrated it by comparing commonly held notions about people who suffer from heart disease versus people who suffer from lung disease. Photos flashed up on the screen of rich powerful people like Bill Clinton, other politicians, sports people, media stars etc. These were the people who had suffered from heart disease. Next slide was a collage of old, wrinkled, grubby shambolic looking people. This was to illustrate a common perception of people suffering from chronic lung disease. Charming isn't it ?

His point was, which illness is more likely to get funding for research and treatment ?Obviously, an extreme example but one that illustrates the need to highlight the whole spectrum of lung disease and 'market' it in a way that makes people more sympathetic and aware of the lives and the people affected by it.

Sorry, this is probably a bit off topic but it does illustrate how far down the ladder lung disease is when it comes to funding.

Katinka46 profile image
Katinka46 in reply to Billiejean_2

Perhaps we should promote our own index of famous people with lung disease? The first that came to my mind was Richard Briers. Lovely, lovely man who boarded with my sister when acting in Norwich. And fed her hens when she was out.

Who else?

K x

Billiejean_2 profile image
Billiejean_2 in reply to Katinka46

Leonard Nimoy

in reply to Billiejean_2

I think it's partly because so many lung conditions are related to smoking, so there's the idea people have brought it on themselves. Really annoying, especially for those of us who've never had a single puff of anything! It's weird, for example heart disease is also connected to smoking, & type II diabetes to obesity, but for some reason there isn't the same disdain for those.

Billiejean_2 profile image
Billiejean_2 in reply to

That does account for most of it Hanne. But there are other more deep-seated reasons as well, I think.

Bettz profile image
Bettz in reply to Billiejean_2

In this big beautiful hospital complex of SBLHC of three or more buildings, ( they are just finishing a large new cancer center) there is no separate Pulmonary Department - it is part of the Cardiac Dept. Also we have no full time Pulmonary Drs! I have questioned, I have complained, but I got no answers.

Katinka46 profile image
Katinka46

I agree but I also feel that none of us can afford to be judgemental about the lifestyle choices that people make. We simply cannot know what battles other people are facing. I think I wrote about this before so forgive if I am repeating myself. I saw a woman smoking outside St James's and later she preceded us onto the Adult Cystic Fibrosis ward. My initial reaction was shock. This woman has known since she was a child that she had a horrible, life-limiting lung disease and yet at some point she chose to start smoking. Second thought: back off, Kate. You gave no idea what kinds of pressures she is under, her landlord may have put her rent up, her boyfriend may have just dumped her because he "can't 'ack it", ATOS may have said she is fit for work, and maybe, having got used to dying at a very young age, she is finding the prospect of living longer with the daily difficulties of her condition just too much. Who knows? And thank God, we have a health service which does not discriminate and judge.

Kate x

in reply to Katinka46

I totally agree Kate. I was at the Brompton yesterday and saw several people come out of the OPD and straight outside for a fag. One lady was wheeled down from the ward, in her dressing gown, and smoked two, one after the other. As a non-smoker, you can't help but think "what the hell?" BUT, as you say, who knows what goes on in people's lives, to make them behave the way they do? None of us can afford to judge. Why do I eat too much chocolate when I'm miserable, even though losing weight would be a good idea? We could get into a debate about free will (which I don't believe in), but best not :D

Billiejean_2 profile image
Billiejean_2 in reply to Katinka46

I think that officially the health services don't discriminate but that many medical people do and can be very judgmental and nasty to people who smoke. My husband's brother-in-law ( the one who currently has TB) had a nasty ulcer on his leg. He had treatment for it twice as an inpatient but was told that if he continued smoking, he would get no further treatment. Every doctor I've ever had, makes a big deal out of the fact that I've never smoked. I get the distinct feeling that if I was a smoker, the attitude would be 'well you brought it on yourself.' Not every doctor is like that obviously but a lot of them, and nurses too, are very lacking in sympathy for smokers. It seems to be one addiction that there is no understanding of.

Catwoman, apologies for going off-topic on your thread just now. I'm sorry to read you've been diagnosed with an ILD. That's a bummer. I get what you mean, there's much more research going on into lung cancer than ILD, though ILD seems to be getting some attention now. I hope you are getting referred to one of the specialist centres.

I don't think there's much to be gained by thinking along the "which is best" line, but understand completely why you would.

Billiejean_2 profile image
Billiejean_2 in reply to

Apologies from me too, Catwoman. Whatever your diagnosis is, you can improve your chances of treatment and options by being as well informed as possible about your condition. Keep asking questions and keep pushing to get referrals etc. If you ring the BLF hotline, they will be a huge help in giving advice and support. Keep in touch with us and apologies once more for going off point.

Catwoman50 profile image
Catwoman50

That's ok Hanney 62, it's been really interesting seeing all the replies (and glad not to have appeared to have upset anyone with the question ) .

All I know is I have ILD not sure which one . The doctor I saw is primarily a lung cancer specialist, so he is referring me to an ILD specialist at the same hospital (local) no mention of referral to any other hospital. Said will discuss in MDT and should hear in about 6 weeks. He did say it might be beneficial to have a lung biopsy, which I find pretty daunting. Been going on nearly a year now, as first referral by gp was to cardiologist because of breathlessness, thorough investigation with them , hence cardio referring me to respiratory, so a LOT of waiting for apps and results to get to this point.

Mixed in with all this hubby is still recovering from bypass and valve surgery carried out in march.

Been a tough year.

Catwoman50 profile image
Catwoman50 in reply to Catwoman50

No need for apologies, Billie. I have picked a lot from this site. And the thread developed some interesting points. We are here to help each other. It's nice people share their experiences and knowledge.

Billiejean_2 profile image
Billiejean_2 in reply to Catwoman50

You have had a tough year CW. It can't be easy trying to support your husband through his recovery, when you're feeling ill yourself. Very best wishes to both of you.

Hello again catwoman. Bloody hell, you & your husband have been through the mill haven't you. Talking of specialist centres, you probably know about Action for Pulmonary Fibrosis and there's a list of them on their website actionpulmonaryfibrosis.org... The one at the Brompton is the largest in Europe.

Azure_Sky profile image
Azure_Sky

My dear husband died on the 5th July from Lung cancer. 5 weeks after the official diagnosis. It is a horrible thing to have. My husband had stopped smoking five years ago.

lisafit1 profile image
lisafit1 in reply to Azure_Sky

I am SO sorry for your loss. My mother in law died in November. She found out she had lung cancer when she went to the we and they admitted her and she died in 4 days. Her lung cancer progressed in those 4 days. At first they said it was pneumonia the next day cancer and then rapidly spread the next few days. It's hard.

lisafit1 profile image
lisafit1 in reply to lisafit1

FYI she quit smoking 23 years ago. Isn't that crazy?

in reply to Azure_Sky

Yes, a good friend of mine smoked briefly in her early 20s and then died aged 50, 3 months after dx with an aggressive form. But another friend is still going strong 7/8 years later.

ILD is a horrible thing too though, and there's a lot less research, treatment possibilities and funding than for cancer, which I think is what catwoman was saying

scorpiolass profile image
scorpiolass in reply to Azure_Sky

I am so sorry Chrisagree with you. I was lucky to recover from LC but my mum & aunt both died & they unlike me never smoked. My mum lived 19 days post diagnosis. Love Margaret x

Robert_Helton profile image
Robert_Helton

What interesting replies.

One of the doctors at our surgery gave my wife an inhaler and told her she had COPD when she went for pains in the chest. After her course of ab she went back to see another doc who got it right, muscle strain from coughing with her infection. I got her inhaler :-).

I have strong opinions regarding cancer.

Research is a con game. Before you throw coins into the bucket, do you stop to think over 70+ years and they haven't found a cure? Bull poop, it's a billion pound per year gravy train, a cure would end that toot sweet. Nothing must interfere with the cash flow.

Cures have been surpressed for decades cause they are cheap with no mega profits to be made from industrial posions.

I have watched close family and friends die miserably from the barbaric "treatments" alopaths prescribe. It's worse than the disease. Radiation causes cell mutation, wow a cancer treatment, what a splendid idea.

I think doctors leave their brains outside the door when starting med school.

Rant over, for now!! :-)

Azure_Sky profile image
Azure_Sky in reply to Robert_Helton

The horrors of chemo are well known. My husband was too far gone to benefit. I know of someone who has stage 1 cancer, she is having a terrible time. All sorts of nasty reactions. Sickness, purple rash, infections.

I agree about the number of experimental cancer treatments. When a patient is terminal they get offered drug trials. My husband didn't want them. I am so glad, for his sake that he refused.

He already had two aneurysms, likely to burst any time. The cancer had spread to his Liver, Lymph Glands and Spine. It was spreading like wildfire. Radiotherapy was mentioned as was chemo, but he said no.

Evine profile image
Evine

I agree there is no 'better' lung disease however the pharmacist at my lung clinic said that the awareness and therefore support for those with cancer is far greater which makes it more difficult and isolating for patients with other lung diseases. I only have an interstitial lung disease as a result of an underlying auto immune disease and although it's been a massive life changer for me and my family, I am faced with 'oooh what's that? My mum once had pneumonia! Is it like a chest infection? Etc etc!' Which is only understandable because it's a new-ish condition and there isn't much awareness. I get what you're saying though! Thank goodness for forums like this - at my darkest times I was comforted by the kind words of others on here. Strength in support. Xxx

Offcut profile image
Offcut

My Mother was diagnosed with Leukemia mainly because a oncall doctor took the time to look at all her blood tests and saw their was a major problem. Which we kept insisting it is not just the fact that she had pneumonia some months back?

I have multi conditions which include the heart and lungs and to get anyone to look at the bigger picture is a nightmare!

Carnival567 profile image
Carnival567 in reply to Offcut

I too have heart and lung problems. At my last hospital the clinics were adjacent but you wouldn't have thought so! New GP first referred me to different hospitals either side of Welsh border who don't even communicate. Second GP changed referral thank goodness. I wish doctors could think holistically. It seems awful to wish for a more high profile illness, but we have personal experience - my dear husband was diagnosed with prostate cancer after raised PSA and the speed he saw specialist was thankfully quick, and he also needs major back surgery, which means yet another hospital. I have come to the conclusion that if you have an unfashionable illness you have to fight all the way. My theory that you have to be well to be ill has been proved so many times!

Azure_Sky profile image
Azure_Sky

Much depends on how early Lung cancer is diagnosed.

jojeanbi profile image
jojeanbi

Hi Catwoman dont know if Lung cancer is a good lung disease my husband diagnosed with terminal lung cancer 8-9 months ago not operable .Been through treatments .

Wouldnt chose any Lung Disease

Jeaniexx

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