Lung Cancer

A support group for anyone affected by lung cancer to come together, share experiences, and ask questions.

What does this mean

Robwashere
Posted by

Way last year. Sent you a PM rather than take over this thread. Diagnosis was bleak, but I am still here and getting about.

N2No
Posted by

Thanks for your reply.  Makes you wonder why they use the word Terminal?  Surely a better word could be found.  I would imagine the wording has caused many people with cancer to be totally and utterly shocked to read Terminal.  This was certainly the case with my sister. 

PhilB
Posted by

Hi all

Can I clear up one misunderstanding, terminal and incurable are VERY different diagnoses.

Having incurable cancer simply means what it says, it cannot be cured, but it CAN BE TREATED. Bit similar to Herpes, once you've had a cold sore you have got them for life, they are incurable.

Terminal means you are untreatable and will die from your illness.

incurable IS TREATABLE.

So PLEASE be careful with which word you use.

Regards Phil AN INCURABLE 

If you didn't care
What happened to me
And I didn't care for you
We would zig-zag our way
Through the boredom and pain
Occasionally glancing up through the rain
Wondering which of the
Buggers to blame........
Pigs on the Wing - Pink Floyd
borderc
Posted by

Hi Phil

Though I can see where you are coming from in your post it’s always a bit of a grey area with the words incurable and terminal, in fact it made me think about my diagnosis over 2 yrs ago now, so I went a got my paperwork out what I was first given at diagnosis to check. It said ‘diagnosis of Terminal lung cancer, palliative chemotherapy offered’, so though I was being told I was terminal I was still offered treatment, In  fact I’m on my 4th different treatment now but all these treatments are to keep me here for as long as possible but knowing I will never be cured of cancer 

I agree that incurable sounds so much better than terminal but they both mean they will continue to treat us with as many different treatments as they can offer 

I took part in a survey a few weeks re; the incurable word and they asked which I thought which word summed it up best. incurable or non-curable I still haven’t made my mind up on that question 

Margaret 

darlo
Posted by

I agree with your post Margaret it is a grey area. I was told terminal was reason that I received Att allowance straight away without signing anything.  oncologist was still telling me for over a yr that I had a 20% chance of  been cured. my daughter who worked for large insurance company tells me there definition of terminal was up to 2 yr.  we have both broke the 2 yr. long may it last.

Derek
PhilB
Posted by

Hi Margaret

Likewise I understand your thoughts, but have you considered the hospital may have used the wrong expression? All the while the treatment is keeping you alive and, hopefully, giving a quality of life, your condition isn't terminal. It only becomes terminal when death is inevitable. The same goes for palliative treatment, as you are aware it means treatment which alleviates the symptoms/progression but wont cure.

This isn't a go at you as I am a firm believer in everyone must have their opinion and we should listen to, and consider, other's thoughts, but at this moment in time I refuse to be classed as terminal. If/when that time arrives I will accept it but for the time being I am incurable.

Phil xx

If you didn't care
What happened to me
And I didn't care for you
We would zig-zag our way
Through the boredom and pain
Occasionally glancing up through the rain
Wondering which of the
Buggers to blame........
Pigs on the Wing - Pink Floyd
Albondigas
Posted by

Hi 

My doctor calls my condition chronic and she doesn't use the word incurable. As far as she is concerned I will always need some form of treatment and therefore I have a chronic condition. 

Albondigas 

PhilB
Posted by

Like it. How about - WANTY? We Are Not Terminal - Yet.

Phil xx 

If you didn't care
What happened to me
And I didn't care for you
We would zig-zag our way
Through the boredom and pain
Occasionally glancing up through the rain
Wondering which of the
Buggers to blame........
Pigs on the Wing - Pink Floyd
PhilB
Posted by

In any event I don't care what others call us, it's how we regard ourselves that matters.

Phil xx 

If you didn't care
What happened to me
And I didn't care for you
We would zig-zag our way
Through the boredom and pain
Occasionally glancing up through the rain
Wondering which of the
Buggers to blame........
Pigs on the Wing - Pink Floyd
judy777
Posted by

My husband recently had to answer a question on a form as to whether or not his cancer was terminal.  He sent an email to his cancer nurse (who is always hugely helpful) and she replied:

‘Just to confirm Dr (oncologist) said that your condition wouldn’t be viewed as terminal. She uses this term if someone is dying and this is not your case.

We call it “incurable” as we cannot completely say that the cancer will be eradicated or won’t come back (this could be months or years) but we are hopeful that in your case the radiotherapy will get rid of what disease is currently seen on scans for a good while to come.’

It does indeed seem somewhat of a grey area.  The email says .... “she (oncologist) uses this term ...’ which suggests to me that others may use it differently. There was definitely a positive ring to the reply though!  

Judy

sharonroadnight
Posted by

Hi Bamber

Have sent you a friend request to chat, my best friend is in the some boat as you,.....