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11 Feb 2020 15:55 in response to Luna68

Hi Lorna,

Glad to hear it went well and you are home. Everything will settle down. Breathlessness is normal and will rapidly improve. Regarding the cough, I was told to do deep breathing followed by a cough every hour. Coughing was very painful and I felt like I had razor blades in my chest.!  but I did manage the odd cough and there was a bit of gunk which I assume came from my remaining lung. They said if anything is there cough it up and get it out! 
Good luck with your recovery

Joy x

 

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14 Feb 2020 23:35 in response to anotherspring

Well i had the surgery and was released within 3 days!! I'm good but got a call today and it kinda didn't sound so good. 

I have a very rare lung cancer and looking it up made me well really upset!

Its a large cell endocrine carcinoma which Apparently has a short life soan despite the fact I'm stage 1b???

Any help here would be appreciated. 

L xx

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16 Feb 2020 15:16 in response to Luna68

Hiya,

So sorry to hear the results weren't what you were hoping. It does look like quite an unusual sort of cancer. Have they given you any idea how they want to proceed? Hopefully once they do then you might start to feel a bit more in control, with something to focus on and a bit of a plan.

Also, having googled, ask about immune-checkpoint inhibitors - a drug called nivolumab, I think - as these are suggested to be effective, though I don't know how available they are (early days in the research) and it might be very difficult to get that particular treatment. Having an unusual type you might find you are able to get referred to somewhere that is interested in testing treatments on this sort of cancer - it's hard for them to get enough patients with the right illness!

But I'm not medical and I don't know how it works, so I don't want to give you the wrong information. But maybe just ask about it in case, you never know.

Best wishes,

AK

 

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17 Feb 2020 09:35 in response to AngieK

Much appreciated. I will ask.

Thank you 

Lorna

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17 Feb 2020 15:10 in response to Luna68

Hi Lorna,

I also have a very rare lung cancer. It's called pleomorphic carcinoma and when I looked it up it said         "aggressive with a poor prognosis" The surgeon had told me not to google it so I was expecting as much, but it is very frightening. 

What I would say is that stage 1b means that it is quite early stage and it has been removed,  so hopefully you will be told that there is not a high risk of it having spread. Operations to remove lung cancer are done with curative intent and the doctors treating me stressed that at the beginning (before it was ascertained that mine had in fact already spread). If there is any significant risk of spread, you might be offered treatment and there are lots of new treatments now for lung cancer as Angie said. A lot that you read on the internet is out of date and things are moving quickly, so wait to hear what they say. 

Just one other thing. I am stage 4 and incurable but I'm having treatment which might work to keep it at bay and today I want back to the gym for the first time 10 weeks after my lung was removed! You will find that life feels more normal and you feel more in control when you have recovered from your operation and you have a treatment plan for your cancer. 
 

Best wishes

Joy 

 

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17 Feb 2020 17:38 in response to anotherspring

Thankyou for this. I loose a grip on reality occasionally so thankyou fir grounding me. Need to leave the house at some point but weatger has been too dramatic and its only been 10 days.

Thanks and well done with the gym.

Lorna 

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17 Feb 2020 17:51 in response to Luna68

Lorna,

No hurry. You will. The weather is indeed terrible and it's very early days. But a bit of fresh air and some nature are good for you mentally.

x

 

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17 Feb 2020 17:59 in response to Luna68

Hi Luna,

my husband who is 75 was diagnosed with lung cancer last May 2019 and like yours, they removed one lobe. He did not need any Chemo and has been given the clear.  All you need to do is your breathing exercises to get your lungs back in shape. I am sure you will live for many more years to come. 
 
 

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17 Feb 2020 18:22 in response to ZibaR

Thankyou i appreciate that. I have been told i will  have chemo and possibly radio given nature of cancer, despite being stage 1b and ordinarily curable. Not looking forward to this at all but a necessary evil.

Thanks

Lorna