Awaiting Diagnosis

I know the consultant has seen a load of CT scans and knows what he is looking at, but so would a radiologist.  At the consultation we were told it wasn't cancer but that the nodule needed monitoring,  then we we got the consultants letter and he said it was unlikely to be cancer and yesterday we got the radiologist report and it says

• The right upper lobe focal opacity appears to have not significantly changed since February 2025, although it is new since June 2024. It could still represent infective aetiology given the time interval, but new underlying malignancy cannot be excluded at this stage. Recommend repeat CT or PET/CT in 3 months, with view to Lung MDT discussion if needed

Sounds a little more scary now.  Can the consultant tell just by looking?  I wouldn't have thought so, so he is just guessing. 

Hi,

This is indeed a very worrying time and not knowing for me was one of the biggest challenges.

Part of the answer is to trust the Multi-Disciplinary Team that will be reviewing all the data. It won't just be the consultant, it will also include potentially surgeons, radiologists, lung specialists, oncology, histology and more. The consultant is just the person talking to you. The MDT will discuss the medical notes and come to a joint decision.

If I'd never smoked, my Herder score would have been lower and I would be on the same surveillance as you experiencing now. I told them at the start of the process that I want all the details, so perhaps this is why I've been told all this.

The scans are more than just pictures. Things like dye uptake, something seen when dye is used, shows the activity of the cells. If uptake is low to moderate, it can indicate that it may be infection or inflammation, and it was explained to me that the normal process is to see if things change over time. If they don't, it becomes part of who we are.

I suspect the wording of the letter is about covering bases, it might be, it might not. The best way to tell is to see if it changes. It can't have enough to raise a flag for other investigations.My first letter stated this

• I explained that although at this stage we cannot give a firm diagnosis, I would expect the most likely diagnosis is lung cancer. The next scans will give us more information about whether this has spread to other sites.

That sounded much like I had cancer to me. A few weeks ago my letter stated

• I mentioned his case was discussed in our Lung MDT today. Preliminary result has not shown any definite cancer but we have sent the sample to a hospital for a second opinion.
• They are aware the possibility still could be a cancer or non- cancer such as inflammation or early cancer like changes. Based on the opinion, we would proceed with intervention management or image surveillance. He would require surveillance for the other cystic lesion long term anyway.
•  
• With his permission, I showed them the images of his recent CT scans. I could not give them a time frame for a second opinion and with the bank holiday there could be a delay.

If it helps, I've been through this process with two family members who were ultimately diagnosed with cancer and the waiting game is almost the hardest part on everybody.  I've had a close scare, but I am also now waiting the next CT scan to make sure nothing has changed.

David

Thank you for replying and sharing your experience.   It really is a worrying time.