Neurological problems related to lung cancer

[LottyLisa]

Hi, I'm new here and I wondered if any can help. Has anyone had Neurological problems that is linked the lung cancer? I am having severe speech problems / dysatharia and painful distressing facial muscle spasms that keep changing with appearance and severity. I had a lobectomy about a month ago, and has this has not improved the Neurological problems. I have been told that this is a autoimmune response but had no investigations into this hypothesis. My Neurologist prefers to "watch and wait" which is frustrating. I understand the NHS is under pressure and am grateful for the treatment I have received, but I am loosing hope. It severly affecting my quality of life. It is 6 weeks since I have seen my Neurologist and no scheduled appointments. I am at a loss as to what to do.

[RoyCastleHelpline Partner Ask the Nurse Roy Castle]

Dear LottyLisa

Sorry to hear you are having some speech and facial muscle disturbance, along with pain.

We would advise that you go back to the neurologist or you could ask for a second opinion through your GP. You could also discuss this with your LCNS.

You could request for this to be investigated and perhaps more clarity on the explanation of an auto immune response; typical symptoms of an auto immune response would include; fatigue, joint pain, skin problems, swollen glands, abdominal pain or digestive issues.

Your symptoms are not a known side effect of lobectomy and it is good that you are under the care of a neurologist, however it sounds like this is impacting on your quality of life and needs to be reassessed.

This link provides some information on Trigeminal neuralgia and Hemi facial spasm: stgeorges.nhs.uk/service/ne...

This link is to our booklet on lung cancer surgery: roycastle.org/app/uploads/2...

If you would like to discuss anything further 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

Kind regards

The Roy Castle Support Team

[LottyLisa in reply to RoyCastleHelpline]

Thank you for you support. The Neurologist thinks I have Paraneoplastic Syndrome indeed related to the tumour, but I haven't had any investigations. Thanks for you and advice.

[RoyCastleHelpline Partner Ask the Nurse Roy Castle in reply to LottyLisa]

HI LottyLisa

This must be frustrating for you not knowing what is causing your symptoms, and what direction to take for further investigations.

This link provides some information on Paraneoplastic Syndrome, which can be difficult to diagnose as it can present as different symptoms. ninds.nih.gov/health-inform...

The link is from America, but provides some detailed information on this.

I hope you are reassessed soon and further investigations are done. You are welcome to contact us if you would like to discuss anything further: [e-mail] or the free phone nurse led helpline number on 0800 358 7200 Monday to Thursday 0900-1700 and Friday 0900-1600

Kind regards

The Roy Castle Support Team

[Popmacca]

Hi LottyLisaI started seeing double and it turned out my lung cancer had spread to my brain. After 5 courses of whole brain radiotherapy it srunk and my eyes went back to normal. I realise this is not what you are dealing with but it’s proof that it can do strange things that you wouldn’t expect, take care

[LottyLisa in reply to Popmacca]

Thank you Popmacca for you time to respond. You have been through so much, I glad your symptoms are under control now. The Neurologist has mentioned I may have something called Paraneoplastic Syndrome ( it's rare) he thinks are related the tumour. He has yet to do any investigations. Thank you so much for you reply. Take care.

[JanetteR57]

Sorry to read of your current health issues after your lobectomy that I hope was successful for your lung cancer? My open lobectomy was in Dec 2010 and in 2015 whilst hospitalised with a chest infection, I started having problems with my left hand/arm. As I was booked in for a bronchoscopy with general anaesthetic I mentioned it in the pre-op and was told it sounded like a trapped nerve and to contact my GP. I did this and he referred me to a hand specialist at the hospital. I waited many weeks (well before pandemic) and as I was on a health board at the time when we were discussing the long waits patients were being subjected to for trauma and orthopaedics I asked what patients were told. The medics in the room said patients would be told they could exercise choice through 'choose and book' and attend private hospital to see somebody on the NHS so I called my GP and asked about this. Like you I was getting desperate as this was my dominant hand and writing, computing/typing, driving, holding anything were becoming increasingly difficult. Eventually I saw the specialist (from my local hospital) in the private hospital who told me that given my history he wanted to check that it wasn't a tumour pressing on a nerve in my neck which apparently can happen with lung cancer and as it was on the same side where my tumour had occurred he didn't want to risk things. This resulted in a few more weeks wait and thankfully the CT scan showed it was trapped in the elbow (nerve tests had shown entrapment but not where) so I had surgery in the October after it had happened in the June. It was unrelated to the lung cancer and suspected to have happened due to keeping my arm in one position during the week's stay in hospital in the June (the week before I went for the pre-op) due to a cannula.

It's worth reminding ourselves that every symptom we may experience may or may not have any relevance to our cancer diagnosis even if our brains/imaginations want to join the dots up that way. I found the book 'cancer is a word not a sentence' by Dr Rob Buckman helped me reframe thoughts I'd had along these lines.

I'd suggest contacting your GP and explaining your anxiety and dissatisfaction with progress and asking for a second opinion. If it's an autoimmune response then that warrants investigation anyway and blood tests or other tests may shed more light on it. good luck.

[LottyLisa in reply to JanetteR57]

Thanks so much for you response. I too work for the NHS. I am totally exasperated with the systems. The Neurologist thinks is is related to the tumour ( a rare disease) but no investigations have been done so far. So, I crack on trying to contact him / my GP.

[JanetteR57 in reply to LottyLisa]

Sometimes it can be even more frustrating to those of us who know a little more about how systems are meant to work - but if something is suspected by a clinician whether it's outside their field of expertise or not, surely that warrants some further investigations if it's causing you problems? hope you get some answers soon. keep on keeping on... we have to be our best advocate even when the system seems stacked against us... good luck.