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Emphysema Confusion

11 Replies

Hi All,

I am 40 years old and healthy and fit.

Recently i went for a lung cancer screening referred by my GP in UK. In th CT scan, there were no lesions, no abnormalities and healthy lung. But radiologist mentioned that there is a solitary tiniest (around 1-2mm) emphysema. I don't have any symptoms and perfectly fine with my health. running around 30mins every day in park or on treadmill without any respiratory issues. I never smoked more than 3 cigarettes( not packs) a day in my life. I was a very light smoker. I used to smoke 1 -3 cigarettes a day (mon-fri), 3 months on and 1 month off. I stopped completely last year. I never visited GP with any serious respiratory issues other than seasonal flu symptoms (once in a year at the most) .

Chest clinic registrar wrote "very mild emphysema" in his report but did not mention anything about follow up and no additional notes on this. I spoke to him on the phone later on to confirm what it means. He told me that radiologist found tiniest emphysema of 1-2mm size and it is solitary(only one) and the lung is healthy. He told me that it will not progress unless i start smoking again. I asked him if it is COPD. He told me that COPD is clinical examination and he dont think i have got COPD as my lung function tests are pretty good (FEV1 vs FCV ratio is 99% as per my private spirometry tests). I am totally down with the word "Emphysema". This word affects me a lot in life as this is creating me medical anxiety and negative thoughts.

I am totally confused what to do. Do i really have emphysema(COPD)? Will it be recorded as emphysema patient in my medical records. Can this incidental high resolution CT scan finding of tiniest emphysema be considered as i got emphysema lung disease, can the CT finding be wrong ?

I called my father in law (who is a retired professor ENT and General Medicine) and his Friend ( Professor , Respiratory Medicine & Surgery) in India and asked them about my report and ct findings . They told me that they don't think that i've got emphysema as i am not a heavy smoker and i am not living or working in polluted environment and i don't have alpha-1 deficiency. They are thinking that this incidental finding may be misinterpreted as emphysema as there are several factors make something appear as emphysema in lungs while taking CT Scans in their experience. They said that there is a possibility of ct artifact . They also told me that they don't diagnose emphysema just based on a single incidental tiny finding in High resolution CT Scan and use several other factors like patient history, symptoms and lung function tests along with CT findings. They said that this is just a radio graphic incidental finding and not the final diagnosis and radio graphic findings probably go wrong particularly with a very small solitary tiniest findings. In their experience , 100% of the times, these incidental findings did not turn as emphysema in the follow ups.

Since i read my chest registrar's report , i became anxious and unable to concentrate on anything other than searching google for reversing emphysema although my father in law and his friend reassured me that i don't have emphysema based on my lung function tests , ct scan radiologist report , my history and my current and past health.

I am sleepless thinking of emphysema all the day. Getting restless and mourning myself.

There are a lot of unanswered questions to me :

1. In UK, if CT scan incidental finding of the tiniest emphysematous change be categorised as generalised emphysama and COPD?

2. Will this be recorded in my medical file as "Emphysema" just based on single incidental radiological finding?

3. Do i really have emphysema and COPD?

4. Can i live my entire life without any problems (like loss of breath , inhillars ,oxygen)?

5. Is this 1-2mm solitary emphysema progress to life threatening?

6. In UK, Do High Resolution CT scan radiologist report on incidental tiniest findings like this be go wrong?

7. Is this end of my financial life as i will not be able to get any mortgage insurance or life insurance or health insurance with emphysema (although it is only 1-2 mm tiniest solitary very mild emphysema ) ?

Please help me. If someone faced the same issue like me : An incidental finding of a single solitary tiniest emphysema in their chest ct scan without any symptoms and light smoking history, Did it treated as emphysema by doctors and recorded in their medical file here in UK?

In India, someone told me that it turned as pseudo emphysema in the followup CT scan. I don't want to go for another CT scan as it is more radiation.

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11 Replies
Tilantoe profile image
Tilantoe

If you have no symptoms I do not understand why you were sent for a ct scan. It's difficult enough trying to get one when you have symptons. You also have had reassurance from knowledgeable people, so why don't you believe them? All I can suggest is perhaps you are suffering from anxiety, or depression. Because what you have described does not appear to be much of anything. So please stop worrying. Or you will be ill. Sorry I can't help you further, but we are not doctors, and can only tell you our own experiences and what works for us. Regards Pat.

hypercat54 profile image
hypercat54

Hi if your lung function is that high then you do not have emphysema or copd! It looks like there are very very mild changes that could lead to it in time. Don't smoke and believe the doctors when they say there is no problem.

Even if you were diagnosed with very mild copd/emphysema it's very unlikely to progress much and you will still have a long and normal healthy lifespan. My lung function is mid 70's and I have few problems with it, but I am a lot older than you and old age, other conditions, and general unfitness along with being around 3 stone overweight is more do do with it.

Please don't develop health anxiety as this will stop you enjoying life to the fullest and ruin your present and future. x

Thank you.

My consultant confirmed that there is just one tiniest area of about 1-2mm showing emphysema. The rest of the lung is very healthy and there are no emphysema changes else where in the lung.

I think I need to stop thinking of it as emphysema and continue my healthy lifestyle. But I m not able to do forget about emphysema word.

I will get ct scan images and video and get it checked by another radiologist and pulmonologist. May be it will put my brain at rest and stopped thinking about “Emphysema”.

Thank you for your reassurance that it will not progress if I keep myself away from smoking.

Oh how I wish your consultant was right!!!!! How different my life would be now..

Thank you roey.

I think that I need to check with my GP and financial advisors on two aspects: How it affects my medical file and my financials (particularly my insurance).

In the life, mortgage, and health insurance applications, I need to fill answer to a question: do you have a progressive disease? If I answer Yes. It is very tough to get insurance. It is almost impossible or not affordable. If I say No , and In an unfortunate situation, my family won’t get the amount insured. It is a dilemma.

If it is in India, they normally ignore these tiniest solitary findings from a single ct scan. But in UK, I don’t know how it works. As no one confirmed (my chest consultant or GP) that I ve got COPD or progressive disease, I can answer “no” to the question on progressive disease. But I don’t know whether it is legally stand as insurance companies try hard to avoid payments almost all of the times:

The next thing is related to GP. Cancer referral was absolutely unnecessary in the first place which created this mental pressure. it was ENT issue but GP thought that it is respiratory issue. I saw some blood in my sputum couple of times after a very bad cold and after experiencing very warm environment. Nose was blocked. I asked GP to refer ENT but she referred me to lung cancer screening .After cancer referral( after my ct scan) I met private ENT specialist who confirmed that it is from nasal pathways. I was so happy that it is a minor issue until I met chest consultant to discuss about ct results.

If emphysema is noted in my file, whenever I go to GP, she may treat me as emphysema patient and write unnecessary tests.

My Indian endocrinologist told me that In the modern day technology, it is quite common to find out a very small tiny things all over the body in scans and tests which don’t create issues in life but create health anxiety unnecessarily.

This is what happening to me. Last year, NHS radiologist found tiny polyp in my gallbladder and reported me. I was anxious and checked it in India and found that NHS measured it wrong and it don’t need to be concerned. I came back to NHS and fought for another scan which confirmed results from India are correct and earlier radiologist report is wrong. But the anxiety and depression created by first test result was horrible. Spoiled around 3 months of my life.

I also heard that there is a chance of showing acute incidental tiniest emphysema some times in CT scan and need another CT scan to confirm .

I will try to get ct images and send for second opinion.

I hope second opinion from another radiologist and chest consultant will reduce my health anxiety.

Thank you for your response.

Bkin profile image
Bkin

UK radiologist don't diagnose that is the specialist respiratory consultants role.

Sounds mighty strange for a radiologist to tell you there is 1-2mm of emphysema showing ! I wonder does that radiologist even know what emphysema is.

How did you get referred for a CT scan if you have never shown any serious respiratory symptoms previously?

This does seem like a repeat copy paste of something I have read before when someone is told they don't have COPD that their lung function is 99%, nothing showing on CT scan and yet the person won't believe the test results or that they are ok.

I think perhaps you should approach your doctor again and discuss your anxieties about having a chronic illness like emphysema / COPD,

Hope you are feeling better soon.

Susan1200 profile image
Susan1200 in reply to Bkin

I totally agree with you Blind.

Susan1200 profile image
Susan1200

You have to be so careful as I personally think your worring far too much , which won't help you emotionally , please relax and try and enjoy each day as it comes.

Johnem profile image
Johnem

Hidden? I believe that you have been on before with similar anxiety issues.

Sorry, it all sounds implausible and far fetched.

My comment was made tongue in cheek.......I am uncertain how yours was made.

Casper20 profile image
Casper20

hi same thing happened to me bee td I have emphysema after a bad chest infection which cleared up but was se t for ct scan which was told slight emphysema have no symptoms or cough and walk about 70 miles per week as i am a dog walkers this was more than a year ago. confused

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