Post radiation pulmonary fibrosis

I have posted a few times and I never seem to get a response. There appear to be long running threads which is fine but if individuals never get much response I am not sure that I get much help from this group.

Hi Linkj I don’t know about your other posts and lack of response but I think with this one , it is because your unfortunate side effect is experienced by very few and therefore people with a similar problem on this breast cancer  site are rare as I’m sure you have found when you searched past posts. Good news re no lung secondaries. 

You need specialist advice and therefore I would assume you will be referred for a respiratory opinion re possible treatment and prognosis . I hope that is organised for you as soon as possible .

I had lumpectomy surgery for breast cancer 22 years ago, I developed radiation induced brachial plexopathy which means I cannot use my left arm and i have lymphodaema in it too, I was told that I had also had a bit of scarring on the left lung when I was investigated for this about ten years ago, fast forward to june this year I have been diagnosed with a recurrence in my left breast which resulted in mastectomy and drs said you having some scarring on your left lung but so far I have not been able to get an answer from them as to the extent of this scarring and whether It will cause problems in the future, I now have a pulmonary nodule on right lung that has to be scanned regularly so on going to keep asking about my left lung until I get some one to tell me if there is radiotherapy damage or not it is difficult to get drs to commit to giving you an answer when it comes to admitting that radiotherapy occurs I belong to a support group called RAGE they are very good you can access specialist physiotherapy through them or by contacting the breast radiation injury rehabilitation service at the royal national hospital for rheumatic diseases in bath, somerset you can self refer to them to get physio and hydrotherapy on the nhs 

Thanks for replying, the surgeon who ordered the scan has no concerns so something I probably just have to live with

Thank you, I live in East Kent, I can find very little on line and unlike normal pulmonary fibrosis, it doesn’t seem to be progressive after two years. I get a little short of breath and cough but otherwise there don’t seem to be any problems.

i am surprised more people aren’t affected and wonder if the radiotherapy was too deep affecting my lung, you always wonder don’t you?

I am so sorry that you have a recurrence, that must be so hard to cope with, especially during Covid. wishing you the very best with your treatment. I had a mastectomy 3 years ago and a DIEP reconstruction 18 months ago so if I can help in any way. Xx