New findings in CT scan but unable to find accurate information about it.

[Eco1]

Hi all. I attended a COPD Review yesterday at my GP surgery. The Nurse gave me a copy of the last two letters to take home and suggested that I read up on the contents.

As there is such a vast amount of information available on the internet, some good and some bad, I am wondering if anyone has any experience or knowledge of findings on my CT scan report.

I have Asthma COPD Overlap Syndrome (ACOS) and my recent CT scan results state,

"apical fibrosis and intralobular septal thickening indicative of fibrotic changes secondary to emphysematous lung disease".

Any ideas anyone?

[Whitechinchilla]

Apols Eco1 that I cant help with advice. I’m just surprised that you would be told to “go home and read up on the report.”

If I were you I would make an appt and request your gp or nurse to fully explain the implications of the report.

Good luck meantime. Hope someone can help you with answers.

[Eco1 in reply to Whitechinchilla]

Thank you for your reply Whitechinchilla.

The Nurse is very good and always provides me with copies of reports and letters. I think she is cautious of telling me any new information which hasn't been discussed by the Doctor first.

Unfortunately, the internet has such a vast array of information and much of it is far too technical for me to understand.

I agree, a trip to the GP is needed.

[hypercat54]

Wow what a mouthful! I totally agree with Whitechinchilla. x

[Eco1 in reply to hypercat54]

Yes it is a mouthful Hypercat54. I think the key is to break it down and research each part separately. It still has not given me answers though.

[2greys]

I would go even further and ask to be referred to a Respiratory Consultant. I seriously doubt that a GP would be qualified enough, fibrosis can be a serious matter. I have done some digging around on the web, it is quite a complicated subject and am not experienced or qualified to be confident to give you the answer. I really think that a Consultant's appointment is what you need, especially in the need of a way forward with any treatment.

[hypercat54 in reply to 2greys]

Very good idea. x

[Eco1 in reply to 2greys]

Hi 2greys. You are probably right but I am under a Consultant and the letter was written from him to my GP. It is an extract from my last scan report.

My concern is that everything I read seems to lean towards pulmonary fibrosis but I have not been told that I have PF. I have been trying to find out if "fibrotic changes" always means PF or could it be linked to something else also. He does say that it is indicative of it being secondary to Emphysema.

Thank you for your reply and advice. It is always good to have discussions with others who have knowledge and experience of lung disease.

[Hidden in reply to Eco1]

There can be fibrotic changes with most lung conditions. I have brronchiectasis and I have had fibrotic changes for years. As long as I am going along ok I ignore it. Your report does read as emphysema. I would suggest going to your GP with the letter and get them to explain in detail what it says. As it is written to them they are meant to understand it and their duty of care towarrds you means that they should make sure that you do too.

[Eco1]

Thank you for your reply Littlepom.

The Nurse did suggest that I see the GP as I am having disturbed sleep and waking with headaches every day. I think I will have to mention it to him and see what he says.

The Emphysema I have had for 21 years and am used to the symptoms associated with this. It is this new information that worries me.

[Offcut]

Firstly I think that you should of been told by nurse/doctor what it means? I would say they are pretty much the same or the result of one or the other. Fibrosis is scarring and the thickening can be as a result of the fibrosis? I have Fibrosis due to a severe infection that damaged my lungs as a result my lungs thickened and I also have RLD plus COPD and now IPAH to help it all along. I had on one of my letters that I had nodules but when it was explained it was not anything to worry about.

Be Well

[Hidden]

Means lungs have Under gone structural changes.

I would question apical fibrosis AS am no expert but think that’s other name for traction bronchiectasis.

I would ask doctors out right do I have pulmonary fibrosis AND what the going to do about it.

Like I say am no expert but would see doctor

[Eco1]

Hi. Thank you all for your replies. I have been to see the GP this morning. It wasn't my usual GP and I felt he was quite dismissive to be honest. He just said that the fibrosis and thickening was wear and tear and nothing to worry about. It is good news but I don't really have much faith in him, considering he mis-diagnosed me with Bronchiectasis previously.

Anyway, he has referred me to Sleep Clinic to rule out sleep apnoea, so that is a good thing.

[Hidden in reply to Eco1]

Glad you feeling better not sure wear tear Is term am familiar with .. but like you say doctors treat those with lung conditions quite sharply.

So not on own there .. I would of said are they going to do regular reviews JUST to rule out unusual ware n tear given fibrosis

[Eco1 in reply to Hidden]

Well I am under the Consultant so I am being monitored as I have enlarged lymph nodes and nodules present. Maybe I just shouldn't be so anxious.

[shadow4me]

I would change my nurse ?that is a awful thing to do they are meant to explain the findings xx