Pleural Effusion

Hi Coolcat,

My wife had a (presumed malignant) pleural effusion. They drained it several times, but it kept coming back.

They wanted to to surgery to irritate the lung lining (pleura), then use a chemical to "stick" the 2 pleura together (pleurodesis). I thought this was a bit extreme as it can cause quite significant pain.

We chose to have an indwelling pleural catheter put in instead, which meant we could drain the fluid regularly at time.

It was easy to do at home, and after a few weeks the fluid dried up and a scan showed that the pleura had sealed together on their own (auto-pleurodesis).

It was a bit weird for her having a tube coming out of her side, and you have to keep the dressing dry which was a pain, but it worked and was much more pleasant than the alternatives.

Just thought I'd share having gone through this as well.

Cheers,

Andy

Hi Andy,

Thank you for your reply. 

I don't like the sound of the surgery.  I don't like the sound of the catheter either, even though it sounds a lot less harsh.

I'm still reeling from the shock of the oncologist not being aware of the fluid in my lungs, even though it showed up in the scan and she ordered the scan to see what may be causing the pain. If I hadn't queried it, I would have left her office none the wiser.

I've started to notice that I get breathless easily. I was putting this down to anxiety but I believe it's due to the fluid in my lung. The Charge nurse on the Oncology ward told me that if it gets worse, before my appointment, to go to A and E. 

However, she said that I will likely have to wait for hours in A and E as the hospitals are inundated with people with flu. She also said it would be risky for me to be surrounded by people with viruses.

My husband is very worried. I feel for him. He, like all carers, is having a rough ride.

Wish I could wake up from this nightmare.

Best wishes.

Hi Coolcat,

The fluid definitely causes breathlessness, so that would explain that.

I forget to mention that you don't have to have any treatment at all for the effusion unless it is causing you issues.

As long as your oxygen saturation is in the acceptable range, some people just choose to live with it.

You could enquire with your GP about getting an oxygen machine for home. My wife has one so she can use oxygen whenever she needs it.

Since her effusion has resolved she doesn't need it anymore, but her oncologist said to keep the machine just in case.

The machines are from the NHS, and don't cost anything except the electricity that they use to run, and this can be claimed back.

Fingers crossed you're feeling better soon, and I know how you feel about A&E!

Cheers,

Andy

Hi Andy,

Happy to hear that your wife's effusion has resolved. What were her symptoms prior to having treatment?

My main issue is pain. If treatment will help ease the pain I will go along with it. I am hoping it will enable me to spend some quality time with my family.

Thank you for sharing your experience with me.

Best wishes,

Ann

Hi Ann,

Her symptoms were breathlessness, chest pain, and low oxygen saturations, dropping into the 80's.

Do you have a pulse oximeter to monitor your oxygen sats?

If they're OK (above ~95%) and you're not breathless you might just need pain meds.

Obviously this is all something to discuss with a nurse/doctor, of which I am neither.

All the best!

Andy

Hi Coolcat - sorry to hear about your pleural effusion. I had the same problem back in April 2024 which led to my secondary BC diagnosis. I had rib pain when breathing and an x-ray identified the effusion; after CT & bone scans I was diagnosed with Triple Neg Secondary in bones (ribs, spine & skull), liver, lymph nodes & pleura.
On diagnosis my worst symptom was the pain in ribs and back - it got to the point where I could only walk a couple of hundred metres whereas we usually walked 7-8km. I also found it difficult to sit and sleep comfortably (only 1 position was pain-free at night - very miserable). I didn't have low oxygen levels in blood, but felt short of breath (or perhaps it was just more difficult to breathe due to the extra fluid round the lung).
GP prescribed Naproxen and Paracetamol which dulled it but didn't cure it; I was also given Oromorph later on.
Onco thought that chemo would improve it but I had to wait for tests for cancer type and whether immunotherapy would work for me so chemo did not start for about 5 weeks after initial diagnosis.
While waiting test results I asked for the pleural effusion to be drained to see whether this would reduce the pain - I had it drained twice, first time removing 1.5 litres (20-May), then 3 weeks later removing a further 1.3 litres of fluid (12-June). At this stage they offered the indwelling catheter but we decided to wait to see if chemo worked (I didn't fancy the catheter as well as the Picc line!).
The second drain was after starting Gem-Carbo chemo on 6-June. Two subsequent checks at the pleural clinic later in July showed that the effusion was too small to drain.
The effusion has mostly gone presumably because of the chemo. My back and rib pain also started reducing at that time, and I stopped all pain relief by the end of July - hooray ! The ongoing fear is that at some point it will return :-( but hopefully that's a long way off.
My CT scan in August showed a 30% reduction in some tumours; the next scan in November showed some further reduction, and the effusion being small.

So, in summary, I didn't find that the pleural drain was a magic pain cure, but that may be because I also had the bone mets in spine & ribs - it could be that my pain was down to these rather than the effusion. Hopefully the drain might help you.
And hopefully the next treatment your Onco prescribes may work as well as my chemo (so far) and reduce the pain.
Good luck.