Missed my lung cancer because of copd - The Roy Castle Lu...

The Roy Castle Lung Cancer Foundation
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Missed my lung cancer because of copd

Suek55
Suek55

Iam called sue i have lung and liver cancer , i want u all to help me i have copd and ashma and was going to a lung speculist with shortness of breath and he sent me for blood test a lung function test and i kept on complaining of shortness of breath and exhausted when walking . I whent back 7 months later for results and demanded he did something as he hadnt he sent me for a ct scan just to shut me up and then i got sent for pet scan and was told i had lung and liver cancer . The only symptom i had was shortness of breath iam now sat at home worried as most of my friends have copd and if they never scan or x ray and only do spirometry or lung function tests i think this is wrong and now i have been told i had less then a yr to live with no treatment but if i had immunotherapy it could give me 2 yr max

9 Replies
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It is an awful feeling when a diagnosis has been missed and you feel that it being found earlier could have had a different outcome. I was in that situation too and like you I didn’t want it to happen to anyone else. You can complain/ raise your concerns to PALS ( the patient advise and liaison service ) at your local hospital. They can then trigger an investigation in to how it happened and make changes to prevent it happening to others in the future. I did do this and was glad I did but did find it emotionally and physically exhausting, which wasn’t ideal when you are having chemotherapy etc. I believe the medical profession need feedback like yours and mine to continue to improve medical care for others. Wishing you all the best treatment from now on. Keeping questioning and asking all the questions that you can to get the best treatment for yourself for your lung cancer x

Suek55
Suek55
in reply to Bow-19

Same to you they can only learn by us hope things do improve for you x

Sorry to read of your experience, Sue. I had similar in Oct 2010 when I turned up at A&E and a chest xray was done that showed a lesion on my left lung but I was discharged. Then readmitted the next day by ambulance but misdiagnosed as asthma and kept in for 6 days on asthma medication. It took a month to get a CT and eventually a PET and then had half my left lung removed due to a 7cm tumour that I was told in Jan 2011 was lung cancer. I hadn't had asthma or hayfever for years and had only once been hospitalised once for it in a hot summer of 1975. i think when patients have other respiratory weakness, it is too easy for medics to get caught up on that instead of investigating what patients are saying is different. Good on you for urging further follow up. There are plenty of patients on this forum and others who are living for years with advanced lung cancer due to advances in medications and research into different combinations of treatments. I'd focus on discussing your own situation with your own clinicians and getting the right treatment for your tumour and mutations as treatments these days are much more personalised and what works for one person may not for another. good luck and welcome to the forum.

Suek55
Suek55
in reply to JanetteR57

Thanks good luck to you too . They have only given me 2 yr if iam lucky with treatment but a lot less without treatment 6 month and so go on drip every 3 week staff are great and proff is great x

JanetteR57
JanetteR57
in reply to Suek55

There is no certainty to life so medics can't really say how long any of us have - so many beat the 'odds' and in the interim, new treatments are being researched and brought into standard practice all the time. The aim of the scientific community is to try and move lung cancer into a condition that could be managed as a chronic condition as with some other cancers so there is far more research underway than any of us can imagine, globally, there is a race to find treatments that work for more people. Good that you're getting to know your own medical team - that's really important. good luck with your treatment.

RoyCastleHelpline
RoyCastleHelplineAdministrator

Dear Suek55,

I am so sorry to read your post and for you to have had such devastating news.I have attached a link for the Patient Advice and Liaison Service.(This is for England,I am not sure of your region).It really is very important you give feedback about your experiences.

I do hope you respond to the immunotherapy treatment and it improves the quality of your life. Please don't hesitate to contact the nurse led Helpline if you would like to talk to someone.

Kind regards,

All the team at the Roy Castle Helpline.

Its a waist of time as they dont do anything , iam ok on immunotherapy iam fine on it and just feel tired the drug is called pembrolizunab but its great drug x

the tiredness will be a combination of your body fighting the cancer and the treatment taking its toll (it's the body's own immune system that responds to pembro) and the heat (if you're in the UK) won't be helping and anxiety about the future. Here's hoping the fatigue improves for you soon.

Thanks for your replys iam still haveing treatment every 3 weeks and stay positive still tired but this is only side effect up to now so not doing bad .

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