I have been told I have suspected lymphangitis and have been given steroids for it. At first I was reassured as thought it was just an inflammation or infection on the lung and the steroids would just clear it up, but having been googling I am now assuming they mean lymphangitis carcinomatosa and that the steroids will just help me to breath, so this looks like it is actually lung mets but in the lymphatic system rather than a tumour. I can’t find much info on this. Does anyone else have this and is it classed as lung mets?
For more detail I was diagnosed with left side primary inoperable BC in September 2011, did 8 cycles of FEC-T which failed to shrink primary tumours sufficiently for surgery. Started rads and Tamoxifen April 2012 but developed skin mets at the same time. Then went onto Capecitabine in June 2012 which kept things stable for around 6 months.
Moved onto Vinorelbine in January 2013 and baseline CT scan in February 2013 showed a small pleural effusion in left side but not enough to drain. Next CT scan in April 2013 showed increase in fluid pushing against lung and was beginning to get a bit breathless. Onc decided to refer for a surgical pleurodesis which I had in April 2013. Some improvement in breathing initially but slow progress. Follow up with surgeon a few weeks after op chest x-ray showed a small amount of fluid had built up again but too early to tell if it’s just filling up the little bit of space not sealed by the op or if the procedure has failed. Consultant would want to do a CT scan in a month but onc had one ordered anyway as baseline for moving on to Letrozole which I started a couple of weeks ago.
Last week was becoming increasingly breathless and on Friday was admitted to hospital to investigate. Chest x-ray showed no significant increase in left sided pleural effusion but small amount of fluid now showing in right side, and shadow on right lung. Forgot to ask if this had been on the x-ray the week earlier as consultant hadn’t mentioned it. So they suspect lymphangitis on right side is contributing to breathlessness. Also to add to the mix they think the skin mets are preventing the left lung from being fully efficient. CT scan was already booked for 11 June and will see onc on 14 June for results.
Hi Gail5
While you are waiting for replies from your fellow forum users could I suggest you give the helpline team here a ring and have a chat with them, they’re here to support you through this. Lines are open until 5pm today (Mon-Fri 9-5 and Sat 10-2) 0808 800 6000.
Take care,
Jo, Facilitator