Shoulder problems & numbness down arm... - The Roy Castle Lu...

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Shoulder problems & numbness down arm & hand?

Jmc8 profile image

Hi

Just over 6yrs ago had a lower lobectomy for adenocarcinoma stage 1b. As I was younger than normal & non smoker I still get followed up by my consultant every 6 months thankfully.

I’ve had tenderness under right arm & by scars with shoulder pain & restrictions since Christmas. By the middle of Jan I couldn’t raise my arm & started to get pains down my arm & numbness/heavy feeling with numbness & sometimes loss of circulation in hand. Saw GP & physio & was referred for chest & shoulder x Ray - all ok & diagnosed as frozen shoulder. Shoulder specialist disagreed & said it’s probably rotator cuff problem & so just had MRI scan. Shoulder pain seems to be getting better but the numbness worse.

All seemed plausible till last Fri when saw consultant for regular check up - he’s concerned that’s there’s particular type of lung cancer in the wall that presses on the nerve that causes the symptoms I have. He wants me scanned on 2 week pathway but complicated by it actually only meaning I see another consultant not get the scan (as GP explained). GP has referred me urgently but who knows how long it will be because of the pandemic. My consultant (who I trust totally) seemed concerned and said he is not saying it is this but equally can’t rule it out either.

Obviously feeling in that limbo land again (it took 15 months of repeat scans & for tumour to grow before I was diagnosed) so just seeing if anyone has gone through something similar or indeed has these symptoms/cancer?

Thanks

6 Replies

Hopefully he will be proved wrong good luck 🤞

Hi, I read your post with interest as I’ve been having some similar symptoms. I was diagnosed in Nov 2019, aged 48 and a never smoker. I had no obvious symptoms and it was picked up on a heart CT scan as I’d developed atrial fibrillation. I had a lower left VATS Lobectomy in Dec 2019 and a couple of cycles of adjuvant Chemo due to the size of the tumour (4.8mm). I was T2bN0M0. My chemo was stopped in March 2020 as the risk from covid was deemed higher than the benefit of the chemo.I got the results of my 12 month scan last month and thankfully still no sign of recurrence. However since August last year I’ve been struggling with shoulder pain and weakness. I’ve not had it examined but it was thought to be from muscle wastage. I had particular difficult stretching behind to take my arm out my jacket sleeve or to fasten/unfasten my bra, and general lifting/reaching. I’ve had 3 months of physio via video calls which has helped and I’d say I’m 50% improved and the physio seems confident I’ll make a full recovery.

I did mention it to my consultant in January and she said it could be a frozen shoulder and suggested I get it examined via my GP, which I’ve not done yet.

I also get numbness/tingling in my hands, usually when I wake up and I thought this was ‘normal’ as a side effect from nerve damage from chemo. After a few clenches it goes.

I’d be really interested to know what info and advice you are given as part of your next steps.

Best wishes

Its fantastic they were able to remove the cancer 6 years ago.

What you are going through now could be from a number of things following the surgery and hopefully it’s not cancer.

I can sympathise as I have permanent nerve damage as I have Spina Bifida and a rare complication called Diastematomyelia which means my spinal cord is split in two and tethered to my spine. I have also been diagnosed with Complex Regional Pain Syndrome. I get pins and needles, stinging, burning, numbness, weakness and more in my feet and legs and one arm and hand.

Have a look at Very Well Health ‘Chronic Pain Syndromes After Lung Cancer Surgery’ as it lists several reasons you may be suffering now.

I’m glad they are investigating and I hope you get answers and then treatment xxx

My lobectomy was in Dec 2010 (Left upper lobe) by open surgery and I recovered well - much of which I put down to my swimming moving all my muscles and repairing nerve damage. In June 2015 I was. having difficulty breathing when I got in the water so got out and went to the walk in medical centre (Friday evening) where they sent me for a chest x-ray and kept me in hospital for a week.... at the end of that week I had tingling in my left arm and pins and needles in my left hand (my dominant hand). Within a week I had a pre-op for a rigid bronchoscopy and mentioned the pins and needles and pain to the doctor who said it sounded like a trapped nerve and if it continued to go to my GP. I saw my GP who prescribed amitryptiline painkillers and referred me to a hand specialist. As the weeks went by waiting for the specialist I was becoming more and more debilitated - dropping things, hardly able to write or type, changing gear when driving was painful etc. As I work in the NHS I asked at a meeting where we were discussing the long waits for people for orthopaedics that patients were being told and a GP said patients would be told they had the choice to have 'choose and book' and go to the independent sector. I called my surgery and indeed was able to go to the private hospital in the late August. The consultant I saw was from my local DGH (where I'd still have been waiting months) - who said given my background he was concerned of exactly what has been described to you - that a tumour might be pressing on the nerve (ulna nerve) so he wanted me back in for a CT scan and with my original team so that was organised so more week's waiting.... I had the scan and thankfully nothing untoward so after various nerve tests due to its severity I was booked in for surgery to reposition the ulna nerve that had become trapped (they believe possibly from holding my arm in one position during the initial hospital stay due to the cannula) to the inside of my elbow fro the cubital tunnel. It took months of physio to recover the use of my hand and even now my writing is illegible! however thankfully it wasn't anything - but I started getting the tingling in both hands and the physiotherapist said if something is in both sides, it's more likely systemic so I had blood tests for rheumatoid arthritis etc but nothing showed. if it's in one side/localised there is usually another cause. I have had very similar pains/sensations in the last 18 months - almost spasm in my left hand and sometimes right but blood tests now show I have an underactive thyroid so likely to be linked. The upshot of my long and rambling post is it could be several things so having the scan will be as much to rule things out as in so try not to think the worst.... and hopefully they will find the cause so you can get some treatment.... good luck.

Thank you for your replies & it’s interesting to know JanetteR57 that you had very similar symptoms. It’s just in my right arm (side of surgery & dominant side) & seemed to happen same time as tenderness around scars. It has been getting worse and oddly when I press around my elbow it worsens so think it’s definitely trapped nerve like you’ve mentioned. The good news is I’ve had a phone call & have the scan on Sun now. I think I’ll put off going back to the shoulder specialist (who seemed keen to give me an injection regardless) until the results of the CT scan are back. I’ll let you know how I get on RLP49 - I was lucky & didn’t need chemo so at least I know it’s not side effects. I’d definitely do to get yours checked out. I don’t want to alarm you but it’s my very thorough physio who when I returned to say i had the numbness who insisted I went to GP & shoulder specialist. Good luck

I found my swimming that I returned to 3 months post surgery helped me recover and redevelop shoulder/arm strength and I believe stretched the muscles and tissues after surgery. My surgeon had expected I would have returned to swimming earlier (I was swimming 130 lengths 3-4 times a week before surgery) but as the hospital had told me when I went to A&E and was admitted in the October to avoid the humidity, damp, cold etc I hadn't been. I had one swim the night before surgery and the morning of surgery then nothing until 31/3/11 and the surgeon warned me it would be painful due to the surgical intervention cutting muscles and disturbing nerves. I understand that yoga/pilates also stretch the muscles in similar ways so may be worth trying these (when safe to do so due to covid) and see if you can develop greater flexibility, strength and reduce potential pressure. let us know how you get on...

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