Lymphangitis carcinomatosa

Hi has anyone had experience of lymphangitis?  I have been under the respiratory team for symptoms of shortness of breath and intermittent chest pains worsening since March this year.  In the meantime SBC diagnosed in my chest wall and probable in my right supraclavicle lymph node ( diagnosed September). The respiratory team always dismissed the possibility of my chest symptoms being due to cancer and I was given antibiotics and then steroids for a diagnosis of organising pneumonia.  These drugs have had no effect and now the oncologists are involved it looks like the opinion is that my chest symptoms are indeed due to cancer.  I am due to start capecitabine in a week or so and hopefully this will help.  The possible diagnosis my oncologist mentioned was lymphangitis carcinomatosa.  I have googled it and it looks grim.  I am triple negative.  Has anyone got any experience of this?


I was diagnosed with lymphangitis carcinomatosa in Jul 2020. I agree it’s difficult to find much info and any news online is grim.
I was reading about a prognosis of 3 months and each month that passed I realised that was probably an out of date  statistic.

I am currently on Capecitebine and feel my breathing has improved and I’m waiting on a scan to confirm if it has shrunk the lymph involvement. I have a semi permanent pleural catheter in my left lung to keep my pleural effusion to a minimum. I’ve also had double pulmonary embolisms so am actually amazed I’m still alive given the 3 month prognosis I was expecting!!

I hope you are now receiving treatment that is working for you, please let me know how you’re doing if you can.

Best wishes