Scleroderma and Lung cancer

[Lorna]

Hi everyone

I was diagnosed with systemic scleroderma in 1999 with fibrosis to my lungs. In a routine x-ray with my pulmologist an anomaly was picked up. After various scans, biopsy etc, Lung cancer was diagnosed in my left lung. Because of the existing lung damage an operation was ruled out as the consultants felt I wouldn’t survive. I had intensive radiotherapy and chemotherapy. The first ct scan shows a shrinkage of a 1/3. I am due my 2nd ct scan - hopefully more shrinkage. Has anyone with scleroderma also had lung cancer as well and any tips! Many thanks.

[LucyJean]

Dear Lorna, you must be a strong lady to have had lung fibrosis for the last 20years and still be fighting on. I can't comment on any statistics for linking lung cancer to scleroderma but having lung fibrosis does increase your risk of lung cancer, regardless of the cause. It is really encouraging the excellent response you have had to initial treatment, and let us hope that the 2nd scan looks just as positive. You sound like a very tough lady who is coping amazingly with your diagnosis and treatment. May it continue! I am sure I speak for many people on this site when I say that we are all thinking of you and sending you our best wishes.

All my best

Lucy xxxx

[Lorna in reply to LucyJean]

Dear Lucy

Thank you so much for your uplifting message. In a strange way, having beaten the odds a bit with my scleroderma has helped me cope with the lung cancer prognosis. When I was diagnosed with scleroderma and given a 5-10 year life expectancy, I decided to just enjoy each day as it comes. Instead I am still here 20 years later. So I plan to do the same with this cancer. Whatever time I have left I will enjoy it. I am blessed with a very supportive family and friends and great medical care. Thanks again Lucy.

Best wishes

Lorna

[Lorna in reply to Lorna]

Dear Lucy

Further reply to your email. I have never smoked and yet I get this double whammy to my lungs. I suppose it’s a bit the luck of the draw!

Lorna

[LucyJean in reply to Lorna]

Hi Lorna, same here, lifelong non smoker, but suffering with shortness of breath on exertion like I had a 40 a day habit!!! I think I must have been busy sitting on the toilet when God was handing out the luck

I had a rather dire prognosis a few years ago that I am defying at the moment...I hope I continue on your timescale.

So glad that you have support around you...it makes the absolute world of difference to whether you thrive and survive I think.

Keep us posted and we will be crossing our fingers for you (I say that as a turn of phrase because I can't remember the last time I was able to cross my fingers

Take care

Lxxx

[Lorna in reply to LucyJean]

Keep strong and positive. You will beat the odds. I love how you spoke about being on the toilet when God was handing out luck. A sense of humour certainly helps. Take care.

[boome]

I really admire your strength and iam sure everything is going to turn out fine with your attitude. I have no answers to your question, I only want to point out that there are new therapies for non operational lung cancer with good results. My mother in law has had chemotherapy first and now she receives immunotherapy ( if iam saying it correctly) and she is doing great. I wish you and everyone else best of luck!

[Lorna in reply to boome]

Dear Boone

I am certainly willing to try any new therapies if they are possible for my situation. Meanwhile, I remain positive and enjoy each day. Thanks for your encouragement.

[Blrd]

Lorna . I also have systemic scleroderma since 1991 with pulmonary fibrosis. I developed stage 3b lung cancer in Nov 2017. Treated with Proton beam radiation and chemo . Now stage four with mets. the lung did clear. The dr is talking immnotherapy with chemo but I am really scared of immuno with scleroderm