After a relatively good day yesterday I finally had a phone call I had been waiting for since the end of last week.
I have been chasing the hospital up to find out if an embolisation procedure to stop my chylothorax will be possible. There is still no news now the consultant radiologist is talking to someone at one of the other hospitals in Manchester. I almost wish he would turn round and say no he can’t do it because at least I could move on.
The pleural team are now talking about sending me to another hospital to see someone else or I could go back to see the cardiothoracic surgeon I saw in October. I have been reluctant to do that as he was so negative last time.
The drains are very uncomfortable it feels like my chest is being squeezed and I am not feeling any benefit but I am not feeling worse.
I was in my local cancer hospital last week with chronic constipation. They were putting me under pressure to increase the drains because there were no breath sounds on the right side and the chest X-ray showed fluid in there. I did explain the situation and the advice I have not to push through the pain and stop when it’s uncomfortable meaning that there is always some fluid in there.
I am back at the chest hospital Monday for a review. They are thinking my right lung might be trapped ie it’s not able to expand fully after the drain and that is what is causing the discomfort. I am feeling really confused and not sure what I am going to do.
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ScardyCat40
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I just wanted to wish you the best in getting this sorted out. I also have a pleurx catheter in my right lung. I’ve had it for over 6 months now, all through frontline chemo. My lung was completely collapsed at diagnosis from a pleural effusion, and after a VATS procedure and placement of the pleurx, the top lobe was re-expanded. We then continued to drain at home, and after several chemos, the fluid is much less and my lung is almost completely re-expanded. My doctor said that only a small crescent at the bottom of the bottom lobe is still down, but the rest is reinflated. I’m now draining about once a week, and still getting a little fluid, so that’s why we’re leaving the pleurx in place for now. I know what you mean about painful drains, though! I didn’t really have much pain initially, just pressure. Now, though, it is often quite painful, and I do stop if/when I need to.
Anyway, I just wanted you to know that you’re not alone in dealing with this painful nuisance, and wish you the best 😊
It’s a video-assisted thoracoscopic surgery (minimally invasive). I had it done soon after diagnosis at The Mayo Clinic, because in my case they wanted to get a better look at the status of my lung, take tissue samples, drain it completely, and place the pleurx catheter.
I find some of the terminology they used a bit confusing as a collapsed lung can be used to describe air trapped in the pleural cavity but I don’t think that is what you mean?
I find it confusing, too, but in my case I’ve always thought that it collapsed due to the large amount of fluid in the pleural space. I have the impression that the small area at the bottom of mine that is still down is due to having been chronically compressed, and that bit may or may not ever fully re-expand.
Sometimes they use collapsed lung to describe a process called atelectasis where the small air sacs in the lung collapse under the pressure of the fluid.
A trapped lung is when the lung does not fully expand following a drain it sort of gets stuck. Sometimes the membrane that covers the lung can become fibrous and stiff.
You are right, collapsed and trapped are different. I am honestly not sure if the bottom of mine is still down due to chronic atelectasis, or if it very likely trapped. I need to clarify that with my thoracic doctor.
I’m so sorry to hear you are still having problems 🙁 It’s been going on for so long now. Is there another specialist you could ask to be referred to? I do hope someone can help you out.
Apologies but I have no useful input on the topic of lung drains.
The way you wrote it up though, it definitely sounds like it's time to change the team, Scardycat. Hope they will be able to realize the surgical option there.
I thought your pleural team already had another team in mind who they wanted to refer you to. Whether they are more or less capable than the NW Lung Centre, who knows.. but might be worthwhile taking the plunge if you feel you are stuck?
The pleural team are based at the NW Lung Centre in Wythenshaw they are considering referring me to Stoke because there is a radiologist there that has done the procedure before but it could take a while to sort out. My oncology team have offered me more chemotherapy so I am in a quandary should I have more treatment now or wait.
Gah what a situation. You could always start chemo and just see where it goes.. if it reduces the now stable disease or brings relief for the lung?
Guess the only thing one can do is to take the decision that feels most right, if the experts are not sure either.
I'm pretty sure my current chemo does diddly squat to tackle any remaining low-grade tumour cells in my body. Still the right decision because it ticks a box, if nothing else. 'Have you tried chemo?' - 'Yah.'
Hope you'll see some relief soon, whatever the treatment decision. Xx. Maus
I was at the chest clinic this morning and it’s all changing again. They are retesting the fluid on my right side for Chyle (it’s a fatty substance) but she was feeling that because of the cancer cells on the left I shouldn’t have the embolisation but should be having chemotherapy. I am really confused but going to see one of my oncologists this Thursday
I do hope your oncologist is on top of all your issues when you have your consultation on Thursday. It sounds as if you could do with someone pulling all the threads together.
Lorraine - I can't help but it sounds like a nightmare and I am sure you are utterly fed up and I don't blame you for not knowing what to do . Surely someone has to bring this to a conclusion - your oncologist maybe? Or if you can bear it try someone new...? I wish you luck with this, meantime your cancer is stable which is so great. - Nicola x
Yes stable is good slightly confusing though. I had the left Pleural effusion drained and they found cancer cells in the fluid - ovarian serous type. I don’t know if this has more or less impact on the chemo option
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