Carcinoid lung tumour

Hello Everyone

My name is Martin and I'm a husband and father to 3 young children. 10, 8 and 6. I'm a carer for my wife and primary carer for the children. My wife has suffered from severe mental health problems for the last 4 years. In the 3 months up to Christmas I had recurrent chest infections and was treated by 3 separate medical professionals and given antibiotics. I had also been undergoing investigations into chronic pain following an inguinal hernia operation back in 2017. My GP had referred me for a MRI scan of my lower spine and I had an appointment in between Christmas and new year to get the results of the scan, but due to the infections, a locum had seen me and I'd been given my third course of antibiotics with steroids. The locum that had prescribed the antibiotics and steroids had also referred me for a chest x-ray. I had the x-ray the day before I was due to have my results of the MRI scan. I received the results of the MRI scan and whilst in the appointment my GP received the results of the chest x-ray, which came back clear with no shadows, no signs of cancer but did show possible COPD. I was duly given an inhaler and referred for a spirometry test and that was the end of any concerns my GP had and was the end of the matter as far as he was concerned. Up until the infections I had absolutely zero issues with my breathing and no cough so couldn't really understand the COPD diagnosis. The COPD diagnosis concerned me greatly as my issues had started the day before; we as a family had buried my 50 year old brother who had just died as a result of an infectious exacerbation of his COPD. (habitual cannabis smoker with poor lifestyle choices).

On  the 2nd Jan whilst working I received a follow up call from the locum to check whether the medications had resolved the infection, which they hadn't as my symptoms had returned. So he referred me for a CT scan of my lungs which I had on 4th Jan and on the 8th Jan, again whilst working received a call from the local hospital inviting me in for an appointment with the consultant the following morning. My heart sank and I knew they had found something. On 9th Jan I was informed that I had a tumour in the lower lobe of my right lung and informed it was more than likely lung cancer and my world fell apart. I have subsequently had all the follow up investigations; PET scan, MR brain scan, spirometry and bronchoscopy with EBUS. Initially I was informed it was a benign carcinoid tumour and referred for surgery to have a lobectomy and have the lower lobe removed. Great; its benign, remove it problem solved or so I thought. I have seen the surgical team since and I have now been informed that a carcinoid tumour is not benign and not necessarily malignant but somewhere in the middle but is definitely lung cancer and I am now scheduled for my operation on 26th Feb (my wife's birthday) to have the lower lobe, middle and a wedge section of the upper lobe removed. I am fortunate in the fact that I am physically fit and in relatively good shape because I do a manual job as I am a white goods engineer. But I now face the reality that the added pressure and stress of all of this could cause my wife to have a relapse, as I pretty much do everything at home and I have never spent a night away from my children in the last 4 years. I can't help wondering if she can cope whilst I spend a week in hospital and long term, if there is going to be a long term if she will be able to cope at all. I wonder if I am going to get the opportunity to watch my 3 beautiful children grow up and what impact this is going to have on them as they have already been through so much with their mums illness. And to add insult to injury my employers have been far from supportive and I am yet to establish where they stand with it all as I will face months of recovery and rehabilitation, which will have massive financial implications. They haven't even acknowledged what I am going through and its business as usual and as much as I am still working, doing my job is the least of my concerns. I am using every ounce of energy getting through each day trying to hold it together for the kids and my wife. We have a good support network around us but I don't how long I can keep putting on a brave face. It would be reassuring to know someone out there has been through this and has come out the other side with a positive outcome. Sorry it's so long winded but I don't sleep very much at the moment. Thanks for letting me share my story.

  • Hi Martin and welcome to the Cancer Chat community.

    You're very welcome to share your story here and there's definitely no need to apologise for the length of your post. A lot has happened and you've been through so much it's only natural that there will be a lot to say. 

    I'm very sorry to hear about your diagnosis and the worries you have about your family and your work. This must be a very stressful and worrying time but our members are here for you and hopefully some of them will be along soon to offer you their support and advice.

    In regards to work, Macmillan have some very useful information and advice about your employment rights which I hope will protect you from being treated unfairly.

    In regards to your family, I can see you've mentioned that you have a good support network around you. Would it be possible to ask family or friends that you are close to if they could help look after or keep an eye on your wife and children whilst you have your operation, even if it's just stopping by for a couple of hours? I'm sure they would like to help you in any way that they can, so if you feel comfortable doing so, don't be afraid to reach out to them in your time of need.

    If it helps, we also have a team of very supportive cancer nurses you can discuss your situation with on 0808 800 4040, Monday - Friday between 9a.m - 5p.m. They're very easy to talk to and will do all they can to help.

    We're thinking of you Martin and wishing you all the best for the 26th Feb.

    Kind regards,

    Steph Cancer Chat Moderator

  • Thanks Steph, you're response is very reassuring and I will endeavour to speak to the cancer nurses, as I finish work on Friday 16/2 in preparation for my procedure. This will give me more time to to seek the support and help I need going forward, Thank you again.

  • Hi sorry to hear about your diagnosis hope all goes well with your operation,  macmillan nurses helped me sort my finances out, I was worried sick what would happend once my sick pay finnished,  I had never claimed any thing in my life although over sixty I was still not of retirement age ,  once my sick pay finished I was able to collect esa it's a form of dole and pip they will give you the best advice and help you fill any forms in , I know this is only one of the dilemmas you are fighting but sorting this out will be one less wishing you well with your treatment and future life