I had upper left lobectomy November 21 which went well and no further treatment required so feel very lucky. The cancer was discovered by chance following an X-ray for something else.
Since November 22 I have suffered continuously with chest infections, one after another. I’m being treated for COPD which I never had before so unsure why that should be the case now? Round after round of steroids and antibiotics which work but then it comes back again. At least I don’t feel as unwell as I did but can’t understand why it keeps happening. I’ve has further tests and a ct scan and thankfully all clear but shows signs of infection mid right lung. My consultant has been really good and she put me on a steroid inhaler too. However, I have developed a very weak voice which makes talking quite strained and I’m wondering if this is to do with the steroids since that’s the only medication I take. Has anybody else had/got experience of this?
Take care everyone and live your best life
Happy Easter
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Brookbond
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I have had all the same symptoms as you since my upper right lobectomy 2 years ago. I have been on a steroid inhaler and using this makes me hoarse however I have been told to gargle and spit after using it and this has helped.
Sorry to read of your ongoing chest infections. I had upper left lobectomy in Dec 2010 which went well and no further treatment. Although I recovered well with breathing - inclines/stairs still were a struggle and I had a bronchoscopy which showed inflammation around the scar/stump part but little else. Like you I was given inhalers. I recovered and developed my lung health by returning to my swimming and steadily building it up to distances/times much better than before and I'd been a regular distance swimmer (130 lengths 2-3 times a week) pre surgery. In 2015 after a heavy day at work when I got in the pool I couldn't get my breathing in any sort of rhythm so took myself off to the walk in centre where they sent me for a chest x-ray and kept me in hospital for a week with a chest infection. Given nebulisers, antibiotics and steroids, that seemed to start off a round of annual infections that resulted in hospital - pneumonia, pseudomonas, RSV - no particular pattern but each one took longer to recover from and required more steroids each time and resulted in not returning to the levels of swimming fitness I had experienced since my surgery. The last one in Jan 2019 took over a year, then had another spring 2020 then the pandemic struck so haven't recovered my previous distance.
However I had been referred for various tests - and again confirmed I did not have asthma (for the second time evidenced since my lobectomy as initial cancer was misdiagnosed as uncontrolled asthma which I hadn't had in decades). However they did diagnose vocal cord dysfunction (ILO) and I kept getting hoarse and suddenly losing my voice which I hadn't had previously as my tonsils were removed before I was 4. I was referred to a speech and language therapist and respiratory physiotherapist who examined exactly how I was breathing and said my breathing was dysfunction. They suggested it might be the surgery but when I explained I'd recovered from that well - they then suggested it might be the bronchoscopies (I've had several ) that trigged me breathing in a very different way.
Your symptoms sound as if could also be inhaler related - the one inhaler I was given in Jan 2019 (Fostair) caused all sorts of problems for me including with my heart rhythm and after 6-7 months I said I was going to stop taking it and my respiratory consultant swapped it back to my previous one (Symbicort) and the heart issues righted themselves. Inhalers do different things and were never tested on people who had part of their lungs removed so do ask for a different one and see if things improve. Breathing exercises may help in the meantime and keeping as active as you can. good luck.
So sorry to hear about your repeated chest infections and hoarse voice. This must be very distressing for you. As others have suggested, one side effect of steroid inhalers can be a hoarse voice, however this should be fully assessed by your cancer doctor or nurse specialist as there can be other causes for this symptom, and treatment will depend on what the cause is. It will also be beneficial to discuss your concerns about your recurrent infections and new diagnosis of COPD with them. Some people find it helpful to make list of questions prior to their appointment. P49 of this booklet gives examples of what to ask
This link will take you to our INSPIRE magazine, the only lung cancer magazine available, where it provides updates, news articles and question and answer section: roycastle.org/help-and-supp...
There is a lung cancer pathway from NICE (The National Institute for Health and Care Excellence), where it is presented as a flow chart and you can look up the type of cancer and see the recommended treatment options. When you click on the link, click on the icon that looks like a mobile phone and this open up to another page with the flow chart: nice.org.uk/guidance/condit...
SUPPORT
There is an online forum where you can find support and encouragement from those living with lung cancer: healthunclocked.com/lungcancer
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... Or by emailing Ellen.Knapp@roycastle.org
Our campaign section provides encouraging accounts from those living with lung cancer: roycastle.org/campaigns/
The Maggie’s centres are a great place to have a cuppa and a chat, they provide practical, financial and emotional support; maggies.org/
We offer a one off grant of up to £150 for anyone with primary lung cancer and you can apply for this through this link: roycastle.org/patient-grant...
I hope some of this is helpful and if there is anything else you would like to discuss you can email ask the nurse at lungcancerhelp@roycastle.org or call our free phone nurse led helpline number on 0800 358 7200 Monday to Thursday 0900-1700 and Friday 0900-1600
My husband had upper right lobectomy in Aug 2021 and has exactly same symptoms as you.He has COPD which he didn’t know he had till after surgery and has had a weak voice and constant chest infections.Same as you he is prescribed steroids and antibiotics which help for a few days but keep reoccurring.He had all clear at his last scan and has just finished a course of 6 weeks physiotherapy which his Gp recommended to try and help with his fitness levels.He was also referred to ENT hospital to have his throat checked which was all clear.His breathlessness is still really bad and he has tried different inhalers so it could be the steroid inhalers that is causing his hoarse voice.I’m afraid it is a case of letting your GP and consultant know what’s going on to see what suits you best.We just thought my husband’s COPD was worse because part of his lung was removed so it’s hard to tell as some people manage to get their fitness levels back .I do hope you manage to get some help with your symptoms.Sorry I haven’t been much help but I do understand what you are going through and wish you all the best in your recovery Take care ❤️
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