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Scleroderma and lungs, nodules etc.

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Need to talk about lungs and scleroderma.  Have had ground glass opacities in lungs since scleroderma was diagnosed 25 years ago. Fortunately my disease has been stable for many years, external skin damage, reflux, Raynaud's etc, but only in last 3 years heart involvement with pericarditis which has recurred and I have been told is due to scleroderma.  A real worry especially after so long this disease has not really attacked internal organs, except oesophagus. 


Now I have a lung nodule which has 'lit up' on a PET scan.  I have a biopsy tomorrow  to confirm malignancy. I am petrified. Apparently there was no other 'lit up ' area in body besides this solitary 18mm nodule.  Who out there has suffered with this? I presume I will need an operation to remove the nodule.  Thinking the worst of course - BUT can people survive after this - and for how long? 


Thank you.  Gina

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Hi Georgina,


Welcome to these forums!


I'm very sorry to hear that you've developed a lung nodule; obviously this is very worrying for you. I do have interstitial lung disease, but thankfully have not experienced nodules on my lungs due to this, so can't advise you from my own experience. However, I have found a couple of previous threads Lung Nodules and Lung Nodules found on X-ray, which I hope you'll find helpful and informative.


One of Support Specialists, Sweet, as mentioned in the first thread, has had these nodules and is still posting and hopefully may see your thread and be able to advise you further. I would suggest that a referral to a lung specialist (as well as your scleroderma expert) would be beneficial to you.


Obviously we can't know whether your particular nodule is benign or malignant, but I'm really hoping that your worst fears won't be realised and you will find that it turns out to be benign.


Kind regards,

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