Complaints and comments re late diagn... - The Roy Castle Lu...

The Roy Castle Lung Cancer Foundation

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Complaints and comments re late diagnosis and misdiagnosis

Bow-19 profile image
9 Replies

I have had a meeting today with the Consultants who misdiagnosed my lung cancer in the early stages. I believe that the Consultants who I met with found the meeting beneficial to help them improve their practice and hopefully prevent the errors that were made with me happening to others.

Lung cancer seems to be easily missed in the early stages and I think it is important when it has been missed that feedback is given to GP practices and hospital Consultants to help them to improve their own practice and prevent errors in diagnosis from reoccurring.

Lung cancer seems to me to be a poor relation in terms of cancers. I know my consultant told me there was only one lung cancer charity ie this one, compared to fifty breast cancer charities. The prognosis for lung cancer is also poor. By telling our story, we can help to improve standards of care for other people in a similiar situation to ourselves in the future.

I know it is hard to complain /comment but we need to help improve services for people with lung cancer and our experiences are one way that we can do this.

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Bow-19 profile image
Bow-19
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9 Replies
MrsGres profile image
MrsGres

You are 100% right. Well done for taking the time and having the courage to educate the doctors involved. Wish more people would feel able to do it.

Bow-19 profile image
Bow-19 in reply to MrsGres

Thank you. I can't say it was easy but am glad that I went to the meeting though and am hoping for some changes in practice because of my experience.

Best wishes

crikey57 profile image
crikey57

Interesting that there is only one charity. I wish you well

Bow-19 profile image
Bow-19 in reply to crikey57

Thank you

Mark63 profile image
Mark63

Hi

Many thanks for your very interesting response to my text. You make some excellent points which I completely understand and agree with. The under representation of Lung Cancer as an issue was partly what led me to write my article.

I agree that it is important to point out any errors to health professionals and your response has made me consider my own circumstances carefully. In my case I didn't have any direct symptoms of lung cancer. My pain all seemed to be associated with a torn cartilage which showed on my X ray and first scan. My named GP was very quick in referring me when I showed other symptoms which eventually revealed the secondaries.

Thanks again, for your thoughts and my very best wishes with your own circumstance.

Dear Bow,

Thank you for your post.

I'm afraid we hear all too often stories like your own, where lung cancer has been missed or misdiagnosed.

We are working continuously on campaigns to raise awareness to the signs and symptoms of lung cancer, within the health professional community as well as the public.

We also fund research into early detection, so we hope that in the future late detection of lung cancer will be a thing of the past.

To hear from people like yourself, and others who use this site, is so important in raising awareness and using a collaborative voice makes it even more powerful.

Best wishes,

Beth, on behalf of Information and support.

steveisfab profile image
steveisfab

Hi Bow , your so brave, I too was misdiagnosed , I went to the GP for over twelve months during which I was put through ten weeks of physio then sent to a muscular skelator specialist who told me I had a torn muscle, it turned out after a long time, the swelling under my arm was cancer in my lymp nodes a secondary to my stage 4 lung cancer , as you can imagine it was such a shock , especially because my GP telephoned me at home and told me the bad news over the phone ( I was home alone at the time )

Bow-19 profile image
Bow-19

Thanks for replying. I find it upsetting the number of people being mis diagnosed. I was referred to a lung cancer clinic and told by the Consultant that I was an inappropriate referral and that my cough was hypersensitivity to a virus. My appointment was followed up with a letter from the Consultant to say that I had middle lobe collapse which was relatively common for people in their forties. I was 48 at the time and a non smoker with no other symptoms so no red flags were highlighlighted. This was January 2013 and in November 2013 I started to loose the eyesight in my right eye due to a secondary tumour there. I too was then diagnosed as stage 4. I had a biopsy of my eye which showed the primary tumour to be in my lung.

I am still waiting for a response to the complaint meeting. It may be worth asking your GP what lessons were learnt from your case for future patients. I believe if this happens it may help people in the future to be diagnosed earlier. I can't say it is easy to do as I have found it to be difficult but want to help people to learn from their mistakes.

Best wishes

steveisfab profile image
steveisfab

Hi Bow , I really don't think my dr would be interested in anything I or anyone else said about my misdiagnosis , however my wife has expressed our thoughts to him via my palative care nurse, don't know what was said as no one has mentioned it , that was way back February 2013

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