Hi, I was diagnosed with lung cancer 15months ago. Whilst operating on me, my consultant had a look at my other lung (right). He found i have a rare condition called Desquamative Intenstitial Pneumautis. Im under cervalince for 10yrs. Im only 41 & just a bit scared that at my next chest scan next month that something might show up.
Thanks for getting in touch and welcome to our online community.
You couldn’t have predicted that during your lung cancer surgery, you’d be diagnosed with a rare lung condition too. That’s a lot to get your head around.
From what I’ve read, desquamative interstitial pneumonitis is really quite rare, accounting for less than 1% of interstitial lung diseases. Symptoms include a dry cough and breathlessness, which can get worse over time. Generally, people respond well to treatments to manage their symptoms and some medications can slow down the decline of lung function.
Feeling scared in the run up to your next scan is natural. Coping with the unpredictability about what it might show can be stressful. People have started using the term ‘scanxiety’ to describe how they feel while waiting for scans and the results.
There’s been lots of discussion here about scanxiety so many people will understand how you’re feeling. Reading about what helps them may help you develop coping strategies. You could consider posting about how you’re feeling so others can offer their guidance and support.
Although this information is for people who have cancer, much of the advice can help if you’re waiting for results or are anxious for other reasons.
It might also help talk things through with us. We often find that we can help people more by speaking with them on the phone. Our helpline is open 7 days a week from 8am-8pm. You can also get back in touch with us here.
I’ve got everything crossed for your scan next month. Don’t hesitate to get back in touch if you need anything.
Karla (Cancer Information Nurse Specialist).
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