Lung Cancer

A support group for anyone affected by lung cancer to come together, share experiences, and ask questions.

I'm fuming!!!!

DINAH MAY
Posted by

Its taken me a week to write this

In May 2017 I went to see my GP, I had a pain under my ribs and back, a ultrasound showed a gallstone on the opposite side of my body, GP arranged an appointment for me with hospital, hence the hospital last week. 

The hospital doctor said to me, the pain in your back and side doesnt seem to be a result of the gallstone and you are not in enough pain to warrant an operation, he said if you were doubled up in pain then I would recommend it. So I said to him so whats causing the pain in my shoulder, ribs and back, he said the ultrasound shows there is no cause for the pain. I'll make an appoinment for you to come back in 6 months in the meantime, take more excercise and diet.

THEN HE SAID IT....."Scans can be dangerous and do more harm than good, he said there are 200,000 people who want scans for cancer you wouldnt scan everybody because scans can be dangerous and cause more harm then good". RED RAG TO A BULL, I said but surely thats not your decision to make, a patient should have that option, I told him that my mother saw a GP for 7 months before she had an Xray, after the Xray my mother was diagnosed with terminal Lung Cancer and now shes dead, he then said " how old was she"?.....it doesnt matter how old she was, I said, if she had, had a scan earlier she may still be alive. My mind was racing I didnt expect to have this conversation. 

That day I felt as thou I had walked in my mums shoes, my mums GP had said to her I cant find anything wrong,then he wrote a prescripton for statin and said at least I can stop you from having a stroke. 7 months later she had an Xray, the result was a terminal sclc diagnosis, 4 months later she died.

I am not worried about me, but I wish with all my heart that I had pushed more to get more help for my mum when she had all the symptoms of lung cancer and the doctor didnt refer her for a scan.

Early diagnosis of lung cancer, my arse, as long as we have doctors who think like this more people will die....I'm fuming....

jenjeneng
Posted by

Don't beat yourself up over this.  Personally I think at the least GPs should be sending people with coughs and breathing complaints for x days. My husband had COPD/asthma doctors couldn't decide which, he had been going to see his GP for months over this horrendous cough he had that was making him really sick. GP just kept saying it's just your COPD use your inhalers more !!! Your chest sounds clear, nothing wrong with you.

After months and months he went for his regular asthma review and the nurse said his symptoms didn't sound right, sent him to a different GP (younger) right away sent him for a chest x ray where the tumour was revealed. 

Small cell like your mum. That had spread.

What I am saying for diagnosis it doesn't matter about xrays or ct  scans, we need GPs with ears that listen when people go to them and who can see past current illnesses. 

There was the advert on tv about having a persistent cough and seeing your GP, did anyone tell the GPs to do tests or xrays ☹☹

rooferpete
Posted by

I can understand that you are fuming ,the same happened to my husband ,it took them months to do anything and they said he had Cup cancer .he responded well to chemo and then he started having throbbing headaches,response was take paracetomol.Then he could not get his words out he was confused and dizzy and started falling.This went on for months and when they finally did something he had brain mets ,they said he could have radiotherapy but then he got worse and they diagnosed malignant meningititis .The last week of his life was horrendous and i cannot come to terms with it that they made him suffer so much .I was begging them to give him pain relief but it was always late ,i won't go into the rest because it was horrific .The delay in treatment each time was months.They said it would not have affected the outcome .I have put in a complaint,Had 1 meeting and most of them didn't turn up,no one should suffer like my husband did .All his symptoms pointed to brain mets but they ignored them,      Vicky

jbacks
Posted by

I feel your frustration! It has been said so many times that early diagnosis is key, but unfortunately some doctors see the campaigns as an inconvenience. We have shown on so many occasions where people have been harmed by NOT having a CT scan on time. Some of us have been impacted personally through late diagnosis of ourselves or loved ones. Many of us know friends or acquaintances that have been subject to lack of diligence or awareness of doctors, and we have all heard the stories on these sites. Yet, no organisation or public body seems to grasp this or want to raise this to get something done.

Often we hear, ....."Scans can be dangerous and do more harm than good". I do not doubt this but I do not know of a single person that has suffered through having a CT scan. I have known some that have been put at ease through it and others, like myself, that received a diagnosis. I had to pay for my CT scan, I wonder why it was deemed to have too much radiation exposure for me on the NHS but I could pay a doctor, who incidentally also worked in the NHS, who felt that he should authorise the scan. Surely the radiation issue existed irrespective of who paid and that no doctor, even privately, should place people in danger. Was my GP in the wrong or was the private doctor flouting the guidelines? Dare I say it, was cost the main factor?

I found that there is trial going on in Scotland where people get a blood test and if positive they get a series of 5 CT scans. Are these people on the trial being subject to dangerous levels of radiation or is the radiation levels an excuse to save money?

Why will some doctors refuse to refer for a CT unless they are being paid for the consultation and the patient indicates they could pay for the scan?

You're summary is perfect

Early diagnosis of lung cancer, my arse, as long as we have doctors who think like this more people will die....

Robwashere
Posted by

I don't know what to say, other than I am not surprised and I shows what the attitude is towards patients and how they don't appreciate the importance of early diagnosis.

One thing that doesn't seem right is that some GPs are wiling to investigate, some need pushed by patients (which lets down the majority of people who don't like to argue) and some just will not listen.

Jenny has a good point, who is talking to the GPs about this?

Rob

borderc
Posted by

Hi 

This thread has certainly made interesting reading, during the time I’ve been on this site so many posts where diagnosis had come to late due to GP’s or hospitals either not taking patients seriously or just missing the important symptoms 

During my time since diagnosis I’ve filed two complaints through pals but despite receiving letters saying they are tightening procedures or changing the way their systems work nothing will change with just one lone voice complaining 

I listened to a news report this evening on bbc news where apparently lung cancer is the poorest cancer in the country for recieving funding reasearch, yet the numbers of younger people and non smokers are going up each year

But as these people are considered low risk they are not getting diagnosed until it’s to late to cure them 

So sad, but how does anyone go about changing the way the system works 

Margaret 

Dorset1
Posted by

Hi, I have been reading this thread with some interest. My journey had been a night mare from start to finish. The final straw happened on the 30th January when my surgeon told me that my x ray is totally clear and there is no sign of cancer. We were on cloud nine as I had already had the middle right side lobe removed as we as a section of the left lung removed. You can not imagine how happy we were. On the 31st I had an opponent with my consultant who informed us that the cancer had spread and there is 5 new signs of cancer in the right lung plus it has spread to 3l lymph nodes. The following week I had an appointment with a new oncologists who told us that my cancer was untreatable and the best they can do was palliative chemo which I start on the 27th. The whole part of this ramble is that with in to weeks I went to being cancer clear to having 12 months maximum to live.

We all really need to be complaining to PALS if we all did it surly some one will pick up on it. I'm not sure I have the strength to run with this but I would be more then willing to help. 

Best wishes to all. Xx



DINAH MAY
Posted by

Hi Vicky

Aww thats awful. Our doctor was an older doctor too, makes you wonder if they are just stuck in their ways and out of touch.

Do you know, that campaign run in Wales(where we live) in July and August 2016, my mum had her Xray in August, probably a prompt from the campaign but the awareness campaign was aimed at informing the general public and not GP's, I would like to think that they already know when to refer for investigation but obviously not. Mum first went to the doctor in January 2016, pity the "Be Clear on Cancer" campaign wasnt running then, just to keep them on their toes and maybe act as a reminder to the GP (sorry for the satire)

NICE guidelines tell GP's when to refer for investigations, but

NICE guidelines are not manditory for health professionals to follow, and so they are not worth the paper it is written on.

Its such a bloody mess, we can see it but why is nobody doing anything about it ?

Teresa x

DINAH MAY
Posted by

Oops sorry that was for you Jen.

DINAH MAY
Posted by

Hi Jback

Well said.

Teresa

tanjusha
Posted by

Ask for x-ray, x-ray is cheaper and people in russia use to have it every year to screen fro tuberculosis. So it should not be so dangerous.

Joshbosh
Posted by

Early diagnoses is the key here but not just X-rays. 

My partner had pneumonia in 2014,2015,2016 and last year he had chest infections, cough syncope and generally ill on his chest. An X-ray was done every time, the last one done in February 2017 reported as “all clear”. In June he was taken in with a swollen face when they found a 7 cm tunour in his right lung pressing against his svc. 

On the 6th July we were told he had 9-12 months and only palliative care.

Unfortunately the rumour invaded a Main Atery just 3 weeks later and he died very suddenly.

I am now at 6 months without him and starting legal proceedings against all the hospitals and gp for not following the Nice guidelines, for not listening to us. 

I complained to pals and they were useless. The tumour was in the same side they found pneumonia each time, X-ray and antibiotics each time. But maybe if one person had said to do a ct scan, the outcome would have been different. He might have been treatable. He might have been able to see his children grow up.

Simon was only 44.

Dorset1
Posted by

God my heart goes out to you. No amount of word's can make any difference. I to am considering taking legal action, but I am not in the same position as you. I hope you can stay strong for you and your children.

Take care. Xxx

Jimbo81
Posted by

Joshbosh,

So sorry to hear this. It shows that it is not just xrays that are missing things. There are symptoms not being picked up until it is too bleedin' obvious what the cause is.

Thoughts are with you and the children. I hope the action you take gets changes made to the system and those accountable realise just how important their diagnosis is and that it requires them to do a diligent job, which you would expect from any medical practitioner.

Jimbo

Jimbo81
Posted by

I wondered if there was any other way to complain other than via PALS. I also wondered if PALS had any responsibility to report upwards the complaints and as this could be useful in identifying trends.

I also thought that it can be hard enough getting a reasonable standard of care, so there would not be much focus on getting complaints sorted, they do appear to have a set of standard responses.