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.

Hi scared_2,

Thank you for your reply. 

Good to hear that your effusion has mostly gone along with your pain. Being off pain meds sounds fantastic!

Like you, I can only lie in one position. I can't do very much either. Six years ago, I was a very fit 60 year old. I loved my mountain bike, hill walking, swimming and going to the gym.

I had resumed some of these activities after both my breast cancer diagnoses and treatments. TNBC in 2918 and Low ER+ in 2022.

I had been feeling pretty good up until June 2024. Then my hip started hurting. I initially put it down to overdoing it at the gym, but it turned out to be mets. 

I have reached the point where I have no interest in extending my life. I see no point, it's pretty miserable right now. I will never be able to get back to doing the things I love. All I want is to be pain free for however long I have left.

I do not want to have any more chemo. I would consider it only if it is likely to reduce the pain without all of the horrible side effects.

My husband is convinced that once the effusion has been drained, the pain in my back and ribs will disappear. I'm not feeling quite so optimistic. But, fingers crossed.

Sending you my very best wishes.

Ann

Hi Coolcat,
It sounds as though it could be worth you trying the effusion drain if they recommend it - hopefully it will improve things for you. It feels strange having it done, but I found it was a pain-free process and only took about 30-45 mins and I could go home immediately after it. I was given the Pleural Clinic direct phone so I could book a checkup and repeat drain if necessary. There is a Macmillan link to what's involved which pretty much ties up with my experience:

www.macmillan.org.uk/.../pleural-effusion
The first time I had it drained my blood pressure dropped slightly at the end of the process when they removed the tube, so I felt light-headed, but they gave me a drink and biscuit and I recovered very quickly. The second time I had no issues at all.

Also, re chemo, if they offer a type you haven't had before is it worth trying it to see if it is less harsh than your previous treatments ? Hopefully it may help to reduce the pain. I had FEC-T in 2015 for my primary ER+ve BC, and found that quite difficult with 2 hospital stays for sepsis. My secondary has changed to Triple Neg so I am on Gem-Carbo chemo which I have found more manageable. I get low haemoglobin, neutrophils, or platelets in some cycles (just done my 9th!) but I have not felt too bad once the initial tiredness goes. I've been lucky and had no symptoms other than tiredness and the poor blood cells which sometimes cause a delay to chemo. They have reduced the strength and frequency of my chemo to help the blood cells so I hope that my next scan says that the chemo is still doing enough to hold the cancer at bay.

But being pain-free (for the moment) has made such a massive difference to my life, and I hope you can get to the same point. I may not be able to do the long hill walks we loved but I have got back to about 5km on a good day (though I find it hard going uphill) and we have been able to enjoy several short UK breaks between all the hospital appointments.
And having a supportive husband is a massive help too.
Good luck with your decisions and any treatment you decide to try.