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Lobectomy worries

chegs4
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Hi, 

Have had a lower right collapsed lung since at least 2012 and finally this year after being in hospital for gallblader removal surgery they refered me to a lung specialst to investigate. 

X-rays, CT/PET scans and a bronchoscope later they discovered this was infact due to a Carcinoid tumour which is blocking to air tube to the lower lobe. They have decided the best course of action would be to remove the entire lobe to reduce the chance of any re-occurance in the future. 

I had an apoointment with the surgeon this morning who has said the tumour is at the very top of the tube for the lower lobe so it is very likely they will have to remove the middle lobe too as he doesn't see a way to cut away enough tissue around the tumour without taking away the pipe for the mid lobe. He is also concerned as PET scan showed a couple of bright spots outwish the tumour area so would be beneficial to take away more tissue. 

Also this means they are unable to do VATS and will need to be open surgery 

Although he is confident taking away this much will remove all cancerous tissue he said they will remove lymph glands to be tested post surgery and make the decision on further chemo treatment based on that. 

Just looking to hear other peoples experiences on the pain levels post surgery and also the recovery in the weeks and moths that followed? When would I expect to be back at work (an office) or is it really just a case of everyones recover is different?

 

Thanks in advance 

  • Hi Chegs4

    Welcome to the forum although I'm sorry to hear about the ongoing problems you've been dealing with. 

    We've some information on our website about surgery for lung cancer which may be of interest to you. 

    [@flissy100]‍ had a lobectomy last year although that was via a VATS procedure and [@Dee26]‍ has mentioned that she has also had a lobectomy. As I've tagged them into your post hopefully they may pop along to say Hello! and share their experiences with you. 

    We do also have a team of nurses her that you can call to talk to about your concerns. They are available Monday to Friday 9am to 5pm on 0808 800 4040. 

    I hope this helps. 
    Best wishes, 
    Jenn
    Cancer Chat moderator

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    Hi Chegs4,

    I had a collapsed left upper lobe and had no other symptoms other than shoulder pain.  My tumour was quite large, blocking the upper bronchus and very close to the major blood vessels around my heart which meant I had to have a full thoracotomy in March this year.  Post op they told me there was lymph node involvement which meant chemotherapy. 

    Throughout this I have kept a notebook of everything, every appt, all the information they gave me, key happenings, etc.  When I was too ill after surgery my family kept it up.  Not only does this help everyone keep up with the massive amount of info/updates, it also serves as an ongoing progress report and my goodness when I read it now, I realise how far I have come.  Also if the doctors visited when my daughters or husband weren't there they could just pick up the book to see what had been happening.

    When I first came round after the surgery I was a little shocked at the state I was in but the hospital were amazing and did their very best to keep me pain free and to get me up and about.  I had some complications which were largely due to the surgery's proximity to my heart and major blood vessels so I was in critical care for 6 days but most of the other patients who had my surgery were back on the ward in 2 days.

    Home took a bit of settling back into and I would advise that you take all the drugs as prescribed for the first weeks as this will help keep you comfortable and aid your recovery. Be prepared to be in pain for the first 8 weeks or so.  I still get some nerve pain now 4 months on.  I also slept on a wedge pillow, bolstered by quite a few other soft pillows and this helped cushion the surgery site during the night.  In the first 8-12 weeks you will be very tired and don't fight it.  Lie down and have a rest or a nap if you're tired, as I found if I didn't I would be in a lot of pain and discomfort.

    Chemo didn't work for me and set me back months.  It made my breathing very difficult and I was hospitalised twice in a week.  My oncologist told me it was only worth 5% of my cure and took me off it so I'm taking my chances on life now with three monthly scans and fingers crossed.

    On the positive side I am 4 months post surgery and I am slowly getting back to my normal, fit , strong self.  I walk, I have begun to jog gently and I paddleboard in the sea several times a week.  Four months on I think I could return to my job as a teacher after the summer holidays.   

    Things I think have helped me?

    * keep a notebook it really helps with monitoring progress and remembering all the info they give you

    * take your meds as instructed even if you have never liked taking pills

    * sleep propped up - laying flat still makes my chest feel tight and congested at times

    * rest for one section of the day during those first 6-8 weeks

    *keep moving - those muscles in your ribcage do not like to be still and just by moving around normally you can reduce the pain and stiffness.

    * eat well and lay off alcohol - I have had the odd one but the way I see it I'd rather feel well than have a glass of wine.

    * gradually increase your exercise levels, I used to run miles but I'm back on couch to 5k - better than just the couch!!  

    * What the surgery did to my body seemed quite shocking to me, a fit, healthy 52 year old non-smoker. A few counselling sessions really helped me to make sense of it all and to focus on my future progress.  I am not out of the woods yet but I feel positive, glad to be alive and focused on the future.  

    I hope this helps you and that all goes well for you.  Reach out if you need me.

  • Offline in reply to Dee26

    Hi Dee26

     

    Thank you for replying, I really appreciate it.

     

    I am sorry to hear you have been going through a rubbish time too, you seem very possitive though! 

    I think I am just shocked at how quickly it all happened... I was expecting them ti either try and fix the collapse or just leave it be as it wasnt causing too many issues. Cancer in the lung is absolutely the last thing you expect at 27!

    I like your idea of keeping a notebook, I think I will do this. The hospital I will be having the surgery in is quite far away from where we live so dont expect family to be in all the time or that often so this will be good to keep them posted. 

    main concern is not knowing how long I will be off work for as they dont give a straight answer when you ask how long recovery is just get the 'everyone is different' answer. 
    I was hoping it could be done VATS and could be back at work within a few weeks but reading other peoples stories I dont see it happening especially with open surgery and my office being 3 flights of stairs up with no lift option! 

    Hopefully the surgery goes smoothly and can just take the recovery as it comes.

  • Offline in reply to chegs4

    Hi again,  sorry for the delay in replying, I've been out enjoying the sunshine!  I reckon if you are reasonably fit and do not need any further treatment you are probably looking at 12 weeks give or take.  I still struggle with stairs 4 months on and I am pretty fit.  But I always take the stairs, no matter what and there are two flights in a store I visit that I can remember dreading and having to stop every few steps to catch my breath back.  I can shoot up both flights now with only a little panting at the top.  Focus on what you can do, rather than what you can't.

    Everyone is different so a time frame for recovery is impossible but you can reduce that recovery time by helping yourself and pushing yourself gently.  Be prepared to have rubbish days when you just feel awful but know that there will be even more better days. And the advice I gave in my first reply is what I honestly beleive has helped me recover quickly and have a positive outlook.  

    I wish you all the very best and hope you have an amazing recovery.  Keep us posted too. x

  • Offline

    Hello I have just seen your post and just wanted to see how you were getting on since your lobectomy?  I am due to have a lobectomy middle and lower lobe of my right lung, due to a carcinoid tumour blocking my bronchial tube that goes into my middle lobe.  So sounds a similar situation to yours.  Therefore any advice you can give me on this would be helpful.  I hope you doing well and have made a good recovery.

  • Offline in reply to Becky1307

    Hi Becky! 
     

    sorry to hear you are in a similar situation! 
     

    all I can say is I am 10000 times better now than I was pre surgery. Took a while to get the pain manageable but honestly after 5/6 weeks it greatly improved!! I had my surgery at the end of July and was back at work part time by the end of September! 
    the first few weeks weren't the best I'm not going to lie. It's painful, you can't get comfy and in general I just felt totally miserable. But like I said the second month was a whole lot better. 
     

    let me know if you have any questions, I would be happy to help

  • Offline in reply to chegs4

    Hello Chegs,

     

    Many thanks for your reply and I am glad to hear you have recovered well it's sounds like you have been through a lot at a young age, I am 43, but still finding it has all come as a shock.  I think my main worries are the pain management and feeling breathless.  Did you find the pain relief from the hospital provided helped?  Probably a silly question but was it quite hard initially to do day to day tasks, like washing your hair or leaning over? I have been told I am going to need open surgery also, due to where it is and also I had pnemonia in February and due to the tumour, I have struggled to get from.  How are you finding things in the current pandemic, now you have recovered have you been shielding at any point or just self distancing? Thanks Becky

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