life after pneumonectomy

[Imkerin]

Hello everyone,

I would be really interested to hear from anyone who has under gone having a whole lung (left) removed. This is my situation after a Carcinoid tumour was discovered in May this year.

During the operation there was also nerve damage which paralysed the left vocal cord/fold leaving me with a depleted voice. After much pushing, Speech and Language Therapy has started.

Pulmonary rehab was not offered, I was told to simply walk, walk, walk. My current situation is that I am experiencing a lot of pain in the left side of my rib cage, front and back. Chasing up the thoracic surgeon has resulted in nothing to-date.

Tests for heart and embolism issues have thankfully come back negative but I am still no further forward in understanding whether these pains are 'part of the healing process' or whether I should be insisting on more investigations. My GP is aware of my situation but is at a loss as to what to do.

I am also somewhat shocked at the thoracic teams way of distancing themselves from the nerve damage. Their discharge letter stated I was 'complaining' of a hoarse voice when from day one after the operation the ward and surgical team were aware of my voice change. I now understand it is exactly how someone with a paralysed vocal cord sounds.

Is anyone reading who has had similar experiences?

[RoyCastleHelpline Partner Ask the Nurse Roy Castle]

Dear Imkerin

So sorry to hear you have had surgery for lung cancer, but also how this has left you feeling.

It is not unusual to have some nerve damage, however the surgical oncologist or lung cancer nurse specialist should explain and reassure on this.

You are entitled to ask for a second opinion under the NHS and this can be done either through your GP or oncologist.

You may wish to contact PALS (The Patient and Advice Liaison Services) they are usually based in every hospital: nhs.uk/service-search/other...

Recovery from any lung surgery can take from 6 weeks to 6 months, depending on the type and method of surgery. This link is directly to our lung surgery booklet with timelines to recovery: roycastle.org/app/uploads/2...

You may be able to self refer for chest physiotherapy via your GP, however your lung cancer nurse specialist can do this. Alternatively you can contact the thoracic surgeons secretary via the hospital switchboard and ask for this. You could ask for another consultation to discuss things further.

Hope you hear from others who have experienced a pneumonectomy and you find support and encouragement.

If you are not having effective nerve pain relief then your oncologist, nurse specialist need to re asses this. Chronic pain can wear you down emotionally, and it may be best to ask for a referral to the pain management clinic .

We have a range of support services, from one to one support to online support groups through zoom , if you are interested in any of these you can register through this link: roycastle.org/help-and-supp...

We offer a one off grant of up to £150 for anyone with lung cancer and you can apply for this through this link: roycastle.org/patient-grant...

If there is anything else you would like to discuss you can email ask the nurse at [e-mail] or call our free phone nurse led helpline number on 0800 358 7200 Monday to Thursday 0900-1700 and Friday 0900-1600

Hope you feel better soon

Kind regards

The Roy Castle Support Team

[Imkerin in reply to RoyCastleHelpline]

Thank you for your advice

[JanetteR57]

sorry to hear of your pain, distress and unsatisfactory after care after your pneumonectomy. I had an upper left lobectomy through open surgery in Dec 2010 and was told nerve pain can last for months. Even now I still have an occasional twinge if I bend down suddenly on the left side. I also had a trapped nerve in my elbow in June 2015 after a week's hospital stay for a chest infection and had a lot of pain - eventually surgically repositioned at the elbow - I was given amitriptylene which eased the pain but did leave me spaced out so I didn't like taking them.

The reason for responding was that I also had poor aftercare as my surgery had been undertaken in a different hospital to where my follow ups were done as an outpatient so I was never sure if they really didn't understand what patients had gone through or whether as I'd been treated in a private hospital but on the NHS as the NHS theatre at the thoracic centre was full due to it being full of bariatric surgical cases they thought I was a private patient. The hospital treatment at the private hospital was less than optimum whether because I was an NHS patient or due to the adverse weather/snow I'll never know but discharged without surgical stockings, given no advice on dressing wound/showering etc so my wound reopened. I never had a clinical nurse specialist (lung CNS)

I had some nasty chest infections from 2015-2019 and in late 2019 finally saw a speech and language therapist and respiratory physiotherapist as by then tests had shown I had dysfunctional breathing and vocal cord dysfunction(inducible laryngeal obstruction to give its correct title) and I had one appointment before the pandemic struck. I was given breathing exercises and a couple of telephone appointments during 2020-2021 when the therapist said she was being transferred to long covid clinics and I was being discharged. Although dissatisfied with the manner, the circumstances were beyond control but I did find the breathing exercises and online yoga sessions suggested (Yoga by Adrienne) helpful. I also was a swimmer pre surgery and went onto swim much further building it up slowly after my surgery as well as walking. personally I believe the stretching movements of swimming accelerated my recovery and I was back at work 3 months after major surgery.

Was your surgery keyhole/VATS or open? there is a tendency to experience longer term nerve issues with the open surgery than the minimally invasive approach.

hope you can find a way to ease your symptoms and leave a more active and experience less pain in future. thinking of you.

[dscontroller]

Hello Imkerin

Sorry to hear of your pain and distress following your pneumonectomy. In December 2011, I was diagnosed with bowel cancer and lung cancer. Two totally separate cancers. I was informed that my bowel operation would take place on the 12th January, 2012, and subject to my remaining strong, my left lung would be operated on and just part of it would be removed.

I underwent the bowel surgery and was told that that particular cancer was not a threat any more, so 3 weeks to the day later, 3rd February, 2012, I was being operated on for my lung cancer. When I was visited by the surgeon later that day, he explained that due to the cancer starting to enter my bronchus, that he had in fact removed my whole lung. This was only 5 days after my 72nd birthday. Within one day, I had totally lost my voice and was only able to whisper in conversation. I was seen by the ENT Consultant who said that sometimes the nerve which had been severed, could grow back. After whispering for 14 months, he decided to operate on my voicebox and carried out what he called a radiesse injection, which entailed injecting silicone around the vocal chords. This did give me a voice which I still have today. Croaky to say the least, but manageable.

I've been very lucky as I have not suffered any pain as a result of either of the operations and I sincerely hope that you can get some proper relief from your pain and discomfort. More to the point, can you ask to see an ENT Consultant and mention the Radiesse treatment. I was informed by him following the operation that it might need re-doing every 12 - 18 months. It wasn't necessary and here we are now 10 1/2 years on and still talking.

Wishing all the very best and thinking of you.