Lung carcinoid

[Naughtnat]

Hi so yesterday I got told that my carcinoid can't simply be removed as because of its position and the fact that it's been growing for 3yrs, so been told that at least 2/3rds of my lung will have to be removed and this fills me with dread im a single mum to a 5yr old so am worried how I'll cope after surgery and how long it takes people to get back on there feet x

[sassy59]

Just want to send lots of hugs and good wishes to you. There has got to be a way to have surgery and do the best for your child. Xxx

[2greys]

Hi Naughtnat, I am sorry to hear that you are afflicted with cancer at such a young age. I can understand your fear and anxiety with the prospect of losing 2/3 of your lung. So first let me put your mind in a calmer state. I am waiting to see if I have developed cancer as well, I have severe COPD and have already lost 2/3 of my lungs and still here, alive and fighting back with exercise, I am still able to work full time.

So you see losing 2/3 is not as bad as you first think, our lungs have a fair bit of built in redundancy. Instead of worrying you should be making yourself stronger so you can recover from the op a lot quicker. I hope you have family close by to help look after your youngster and yourself whilst you recuperate.

[Hidden]

Very sorry to hear your news best of luck with a speedy recovery from surgery lots of hugs xxx

[skischool]

Hi there,The fact that your lung cancer is operable is a very posotive thing although that may not seem so at the moment.Your 2 lung sections have 5 lobes the right lung having 3 and the left lung having 2.My wife Cecilia had an upper left lobectomy and her stay in hospital was 5 days,about average for the procedure,Her recuperation at home was estimated between 4 -6 weeks before retaining the lung capacity/endurance prior to operation.These are all very rough guidelines and all depends on age,state of health etc.You will certainly need assistance if you are a single mum and no responsible consultant/surgeon would go ahead with a procedure without assurance that you had a viable care plan and family and agency assistance on return to the home enviroment.Generally pain relief initially is in the form of anelgesic or low morphine based(such as tramadol)and you will need monitoring at home.I hope i have not alarmed you with all of this,the operation will almost certainly extend and improve your quality of life,the discomforts and anxiety afterwards are manageable but you will certainly need assistance and i am perplexed that nobody within your medical team has taken the time to explain to you how they are going to proceed with this.Sorry this is so long winded but i just want to assure you that all this is achievable with the most posotive outcome for you with the neccassary suport,Good luck in the future mike

[Hidden]

A friend of mine was about your age when she had to have half her lung removed. She was sore and painful for around 6 weeks after surgery. She has 3 young children and said she has never felt fitter.

She has been left with quite a big scar but she tells people she was bitten by a shark! I know you are having more removed than that and wish you all the best.

[skischool]

the scar can be quite large and ugly at first but fades quite rapidly within a couple of years and unless you are into the naturalist scene(whatever rocks your boat)would generally be covered at the back by your bra and straps.I should not know this sort of thing being a bloke so you will have to thank my wife Cecilia for this fountain of knowledge.good luck mike

[judg69]

You will be fine. Stage 3 Lung cancer survivor here with top lobe of right lung removed May 31, 2012. My cancer was at best only borderline operable, but finally my oncologist and surgeon approved the surgery. Best thing I ever did. Think and plan for the best and start walking. Trust me , they will get you up walking straightaway! Remainder of your lungs can actually slightly enlarge and basically take up the slack. In any event , nothing but the best for you and your child! Judg69

[Carnival567]

Thinking of you and believing all will go well. Do not be afraid to express your worries and ask for help. Many blessings xx

[peege]

Hi, just wanted to say I'm sorry you have this diagnosis. I really hope you have a good friend or relative who'll come to help with your child and that all goes well for the op.

From reading the above replies it looks as though you can look forward to a great quality of life together with your little one after the op. You are young enough for healing well. Concentrate on getting as fit as possible pre op, healthy weight, healthy diet and exercise as much as you can.

Wishing you all the very best, Peege

[Naughtnat]

So had my broncoscopy this week to see how much of my lung needs to be removed and the surgeon thinks that he can leave the top lobe and just remove the middle and bottom lobe which is some good news, I'm due to go on a family holiday to Greece in 9 weeks so I'm against the clock to whether or not I'll make that as I'm yet to get a date for the operation can anyone recommend any good insurance companies I cud try just to get an idea of what kind of cost I'm looking at? x

[Hidden in reply to Naughtnat]

Hey just wondering how you are getting on? I have NETs too. Are you under a centre of excellence?

[Naughtnat in reply to Hidden]

Hi I had 2 3rds of my lung removed 8 weeks ago I've been referred to Christies hospital in Manchester for them to keep an eye on me, been told my tumour had a 1% growth rate so it hadn't really grown much in 3yrs but was a decent size, I've just been away recently and really struggled with my breathing in the heat and still find that climbing stairs is making me out of breathe where is it tumour? How u doing? x

[Hidden in reply to Naughtnat]

I believe the Doctor there is lovely and his nurse is supposed to be fantastic too. Did you have it via VATS or a thoractomy? I had VATS in November but still suffering with pain now. I used to find the heat helped me but this year I really struggled. With lung NETs the mitotic rate is as important as the Ki67 (growth rate) but 1% is brilliant. Make sure to push for a GA-68 scan in Christies.

I'm ok, been very sick. I have DIPNECH which is multiple tumours and small tumourlets throughout both lungs so they can't remove them and it has metastasised. I started somatostatin analogue injections and they're killing me with side effects but Im hopeful they will work.

Are you on facebook? There's a great group called lovable lungoids for people like us xxx

[Naughtnat in reply to Hidden]

Hi I had a lobectomy so they went in under my right arm so I've had a fair bit of pain as my bra sits right on the scar, I met Mr mansoorI've had a ct scan and booked in to have a pet scan next do u live local to Christies then? I've joined that group on fb thanks for that x