Radiation pneumonitis and pulmonary fibrosis

[catlady91]

My mum developed radiation pneumonitis quite badly a few weeks ago and was treated with steroids which she recently stopped taking. She still feels breathless sometimes but is much better. I'm very worried as at her last visit with the consultant he said that she had pulmonary fibrosis (scarring of the lungs). He didn't elaborate about it or say much about it. He said that it's normal that my mum has these problems as she was given such a high dose of radiation.

 

I've read about pulmonary fibrosis and it's a very serious condition. Idiopathic pulmonary fibrosis has a life expectancy of 3-5 years. I don't know if idiopathic (unknown cause) pulmonary fibrosis has a different outlook to pulmonary fibrosis. I'm scared that it will shorten my mum's lifespan and that she'll have chronic problems and she's still not a hundred percent better. She want for a short walk today but didn't have breathlessness, only hip pain. 

 

Has anyone else experienced this. My mum was told that she would have scarring from radiation but I'm scared that it's severe.

[Tom Galli]

Catlady,

I believe pulmonary fibrosis can occur after fractional general radiation, but I believe doses and intervals are designed to avoid this difficulty. I had 30 sessions of fractional general radiation, then 3 sessions of precision radiation, and my doctors haven't suggested I experienced pulmonary fibrosis. 

I'm not acquainted with the treatment methods in the UK health system so I can't comment on dose methodology. I would not expect a doctor to rule the condition normal due to high doses of medical radiation. I do hope it is a temporary condition. Is it possible to have your mom evaluated by another doctor?

Stay the course.

Tom

[catlady91]

Hi Tom,

She had a new doctor who seems miles better than the previous one. He didn't seem too concerned about it. My mum was told that she would have some scarring after radiation anyway. She received the highest dose as they treated her very aggressively. I'll get my mum to ask her doctor more next time.

It's just one thing after another 😞. When can I ever relax and live in peace instead of constant fear?

[LouT]

Catlady,

I only know what I've read about pulmonary fibrosis.  It does appear to be a serious disease and while there is presently no curative approach (other than transplant) there are a number of things that can relieve symptoms.  But, that is only what I've read and that is related to a disease caused situation, you really need to sit with the doctor and ask some of these very good questions you have, especially about progression, severity and prognosis.  I'm sorry I couldn't provide more about it.

Lou