Pneumothorax and breathlessness after lobectomy / segmentectomy

[MissyD1]

Hi all

My mum had a vats lower right lobectomy and upper left segmentectomy for Adenocarcinoma about 8 weeks ago. Following the surgery she suffered a pneumothorax and infection due to a drain not being fitted correctly. After a week in hospital she was discharged and unfortunately suffered a further pneumothorax 3 days later. She then spent 4 weeks in hospital and underwent suction and blood pleurodesis to re-inflate her lung. She had another infection when she was discharged and prescribed antibiotics however after a week at home she experienced severe pain across her back and in her chest and was re-admitted to hospital. A chest X-ray and ct of her lungs did not reveal anything remarkable except for some fluid around her lungs (which was present when she was previously discharged but considered to be within normal limits) and the doctors said her crp blood test was still elevated (37 I think) and so she has been discharged home yesterday with a further course of antibiotics. The doctors put the pain down to musculoskeletal pain.

Has anyone else experienced complications like this after lung surgery? My question is really about breathlessness as I have noticed she is still quite breathless even just walking short distances at home, she also seems really tired. Is it normal to be quite short of breath on light exertion? Would the infection be adding to the breathlessness? I know that if there was anything suspicious on her X-ray etc the doctors would have told her but after everything that has happened I feel that I am worrying about every little thing 😩

Thanks in advance x

[JanetteR57]

I had a lobectomy (left upper) in Dec 2010 and was recently readmitted to hospital where I spent 14 days with a chest infection. I had considerable pain across my chest (around my left ribs) - very sharp and chest X-ray didn't reveal anything and respiratory doctors suggested it might be muscular skeletal. However I was extremely constipated from the various meds I'd been on (nebulisers, infusions, steroids (12 a day), antibiotics by drip and orally, etc etc) and the pressure on my diaphragm was very painful as I could only sit in the bed with the back reclined as sitting in a regular chair or wheelchair (as I was when sent for CXR) was extremely painful. In recent weeks since coming home, the pain has subsided and as meds have reduced, so have the side effects.

Yes - to reassure you, the breathlessness will be made worse by the infection (in fact I usually work full time and speak publicly as part of my work but hadn't even got enough breath to register myself at hospital or call an ambulance). It's also usual to be breathless after the surgery and it can take several months for the body to recover and lungs/brain to retrain to breathe normally.

Last year when at chest clinic, I got chatting to a patient who was being offered a lobectomy but was going to refuse as her fear of being breathless was too high for her to consider this but chatting to me (having lost half a lung) and another man who'd had a pneumonectomy only a few months earlier with neither of us breathless, changed her outlook.

We can often be too impatient and want instant recovery and fear that every symptom is cancer related. The body is an amazing structure and we are incredibly resilient but major surgery or infection on their own take time to recover from so having both, will take a while. Good luck for her recovery and for your anxiety to lessen. I know it's hard but try not to worry. You may find 'Cancer is a word not a sentence' by Dr Rob Buckman helpful to allay your fears and put the condition into context.

[MissyD1 in reply to JanetteR57]

JanetteR57 thank you so much for your reply! The pain you describe from the chest infection is exactly what my mum experienced at the weekend and she too was getting breathless when speaking.

It's re-assuring to hear that the breathlessness is to be expected at this stage but will improve. I think she needs to take things 1 day at a time and not expect too much at once.

Wishing you all the best and thanks again x

[JanetteR57 in reply to MissyD1]

You're welcome. The doctor also described my recent incident as pleuritic pain and at times it felt like a real sharp spasm almost cramp like.

I was told after my surgery (adenocarcinoma 7cm) that an open thoracatomy is more traumatic than open heart surgery in terms of what is done. Sounds as if your mum has had two surgeries in one and although less invasive VATS procedure, it will still have been traumatic for her body to recover and will take a while to heal. Some days will be better than others - it can be disheartening to find after a few good days/weeks a setback in terms of tiredness, breathlessness or general wellbeing happens but that's life! Rest is an important part of recovery.

What will be important in the coming weeks and months is for to get up and about to retrain the lungs to breathe more deeply rather than shallowly. Fear can stop us being active but it is important to reinflate the lungs and use them more effectively. As most of us don't use all our lungs to breathe, losing part of them won't be the end of the world but it will take training of some sort. Has your mum been given pulmonary rehab exercises by a physiotherapist to do? Worth checking with a lung cancer nurse or respiratory nurse if she has one on what she could do. I swim regularly (and did before surgery) although it took a while after surgery before I resumed it. Even though I recovered my breathing for swimming, climbing stairs at home took more than 8 months to recover post surgical breathlessness and chest infections over the years have and can knock me for six and reduce my fitness to zero.

However I pick myself up and get going again when I feel able. I have swum further in recent years than before surgery so have patience. I've just gone back after a recent 14 day hospital and recovering my distances). Hope she recovers well - all in good time. best of luck. x

[RoyCastleHelpline Partner Ask the Nurse Roy Castle]

Hi MissyD1,

I am sorry your mum has had such a lot of pain following surgery. Janette957's response to your post has been inspirational and she offers good advice.

Poor postoperative pain control can reduce your mums ability to participate in the chest physio exercises she will have been given by the physiotherapist in hospital.It is important to make sure her pain is under control,if it is not speak to her GP or nurse specialist.After surgery or the insertion of chest drains, patients often complain of neuropathic pain around the wound incision site due to tissue trauma from the operation.It is a good idea to make sure your mum describes exactly what the pain is like for example,burning ,shooting,numb etc as different types of pain require different types of pain medication to help relieve it.

Try and avoid her being constipated as straining can increase discomfort.Encouraging gentle exercise should be encouraged as it decreases muscle spasm and boosts circulation.In time the post op complications should subside.She will no doubt be followed up in the out patient clinic.

Don't hesitate to contact the lung cancer nurse specialist if you have any worries.Just give her/him a ring or leave a message,they have lots of experience of patients who have gone through similar experiences.

Also,feel free to call the nurse led Helpline:Freephone 0800 358 7200 if you feel you need to talk to someone for advice.

Kind regards,

All the team at the Roy Castle Helpline.