Shortness of breath: I have stage... - The Roy Castle Lu...

The Roy Castle Lung Cancer Foundation

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Shortness of breath

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I have stage 4 NSCLC Adenocarcinoma lung cancer. I also have developed what is known as Tracheobronchomalacia (TBM). This is a rare condition that occurs when the walls of the airway are weak, which can cause the airway to become narrow or collapse. This makes it very difficult to breath on exertion. As my other side effects from treatment are under control. I feel having this is taking away my quality of life because I basically can't do anything without running out of breath. I have been referred to a Thoracic surgeon but still waiting to hear back on what options I may have. I wanted to put it out there to see if anyone in this group has experienced this and what treatments were they given, and did they work?

Thank you.

3 Replies

Hi I have the same symptoms that started after radiotherapy I was admitted to hospital under a thoracic surgeon who after 10 days discharged me and told me he didn’t want to see me anymore so I am now going for a second opinion privately

it can be exhausting and frightening when our airways close whatever the cause and create difficulties breathing... there are many breathing exercises that don't involve exertion - learning to control breathing is something we often don't think about but it can make a really difference irrespective of the condition or cause... I had a lobectomy (half left lung removed) in Dec 2010 and a couple of years ago after several nasty chest infections was having real difficulties breathing and referred for various tests where I was diagnosed with ILO (formerly vocal cord dysfunction) alongside my hypersensitive airways... I was referred to a respiratory physiotherapist and speech and language therapist but it took a long time to see anyone and then appointments were only by phone during 2020-21 (pandemic). they suggested various breathing exercises to make things easier which has helped... hope these may be of use... and.


I have attached a leaflet which provides information to people who have Tracheobronchomalacia, their families and carers. It explains what Tracheobronchomalacia is and how physiotherapy can play a part in its treatment.

Kind regards,

All the team at the Roy Castle Ask the Nurse helpline

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