Pleural Effusion

[Ashtead2]

I live in the UK. Mbc diagnosed in August 2022, not been diagnosed with cancer before. I have mets to lungs which has caused a pleural effusion. In November 2022 I had a permanent indwelling pleural catheter fitted. District nurses come twice a week to drain the fluid. Does anyone else have one of these, if so how do you get in with it. I have a lot of pain everytime the fluid is drained which lasts for about 24 hours?

[Gingerann1]

Ashtead2 - I was diagnosed with a pleural effusion in Nov of 2020 and they did a procedure to drain the fluid (thoreaucentesis) and put me on Ibrance and Faslodex. The PE resolved itself and at 15 months there was no evidence of metastatic disease (NED) for a year now. Did you have this procedure first before they put in the catheter and fluid kept building? If you have MBC it was determined that the fluid had bc cells, right? How is your Onc dealing with the MBC? Are you on meds? Sorry, lots of questions and no answers.

[Ashtead2 in reply to Gingerann1]

Thank you for your reply. I was admitted to hospital last August with shortness of breath. They drained 4 litres of fluid from pleural space, and did a Pleurodesis which didn't work. Had MRI, CT scans and a breast biopsy and discovered I had breast cancer with mets to lungs, spine and liver. I also had a fungating breast wound. I had no idea I was that ill, I had no previous diagnosis of cancer. I was put on Letrozole in August 2022 whilst in hospital as the oncologist knew I had breast cancer due to breast wound, and then Ibrance in September when I came out of hospital. I got a chest infection in October, and became very short of breath again, went for x-rays, they discovered the pleural effusion was back. Took me off Ibrance and suggested I had a permanent drain put in. I had the indwelling pleural catheter fitted middle of November. Once stitches were out I went back on Ibrance. Have fluid drained twice a week, cut down from three times a week, usually 350 to 450 ml each time. Currently on Letrozole and Ibrance 125g. Supposed to have monthly denosumab injections, have had two but taken off them as I need some dental work. Was taking Adcal with Vit D3 but taken off those as told I only needed them when I have the denosumab injection. Due to have a CT scan tomorrow.

[Bestbird in reply to Ashtead2]

I had pleural effusion in 2011 and had an indwelling Pleurx catheter until systemic treatment helped dry everything up. If it hurts to drain, drain slowly (I pinched the catheter a little to slow it). I hope you do very well and have no more dicomfort!

[Ashtead2 in reply to Bestbird]

Thank you for your reply. Pleased that your effusion dried up, I'm hoping mine will too. I have district nurses come to my home twice a week to drain the fluid, some are gentler than others, it's better when they take things slowly and do what you said. Thanks again, you have given me hope.

[Gingerann1 in reply to Ashtead2]

thank you for the clarification. I didn’t realize from your last post that you had other Mets as well. Hoping that the advice given by others here about asking them to do it slower will provide you some comfort and at some point you will be able to have that catheter removed altogether. Praying for you and all of us battling the beast.

[Ashtead2 in reply to Gingerann1]

Thank you. The diagnosis came as a huge shock as I had no idea I had cancer. I had just got over covid and shingles and thought the breathlessness was long covid, and the breast wound was to do with shingles as that was where I had the rash. This forum has been invaluable already. I too hope the catheter can be removed soon. The nurses are brilliant.

[Gingerann1 in reply to Ashtead2]

glad you are confident in your team. That is so important for peace of mind.

[Bestbird]

Please tell your nurses before they start draining that you want them to do it very slowly, and let them know immediately if you begin to feel uncomfortable.

We were eventually trained to drain at home, so my husband and I were able to do it as needed on our own.

Hoping you "dry up" soon!

[Ashtead2 in reply to Bestbird]

Than you for replying. I am working with the nurses, some are better than others, we are having supply issues with the bottles at the moment, they can't get the smaller bottles I use only the larger ones which seem to cause more pain, I get them to stop as soon as the pain starts. I am too much of a coward to do the draining myself. The nurses check the site for infections which is good as I'm on Ibrance which makes me susceptible to infections, they are such lovely people. Thanks again, I hope the effusion dries up soon.