Living with incurable cancer - patients only

This group is specifically for people with an incurable or terminal diagnosis. Whether you need to talk about dying, or about making the most of your life, you can discuss your feelings openly here.

Can anyone tell me the difference between "Incurable" and "terminal"

anndanv
Posted by
Hi, as usual it's the middle of the night and my mind is working overtime. I was reading some of the posts and got to thinking about this. I thought they had just changed from saying terminal to saying Incurable because it sounds kinder but when reading posts and realising some people diagnosed with "Incurable cancer" are still living 5,8 &9 years later. When I was given my diagnosis last July my oncologist didn't really use either word. She said I had metastatic melanoma that had spread to lymph nodes on chest and abdomen and also the bone and if she had been telling me this even 2 years ago, she'd be saying "sorry, there is nothing we can do and you maybe have a year, if you are lucky". However there are some drugs now that can help slow the growth down that can give you an extra maybe 3,6 or 9 months and who knows maybe more! So I'm thinking of dying, funerals, my family etc. then I read these posts and thought (ever positive) well maybe I will be here for a while yet! I'm confused! can anyone shed some light on this for me please? Then maybe I'll get some sleep one of these nights. Love Annette x
Padgatepeach
Posted by
Hi Annette, my take on it is:- Incurable means that you can be given treatment, sometimes many times over which will prolong your life but eventually there will probably come a point when they can't do any more for you treatment wise. Terminal seems to be used nowadays for when you have 6 months or less to live. Essentially they both mean the same thing that eventually your illness will be fatal, I agree with what you say though I think sometimes they say incurable because they think it sounds kinder. I'll be interested to see if other people have different interpretations. Take care Anne Xxx
anndanv
Posted by
Hi Anne, thanks for your reply. Yes, that could be it, that they can offer you some kind of treatment. Maybe it also depends on where the cancer is just how many treatments they can try eh? Ax
ollie1
Posted by

Hi Annette,

Sorry you are up in the night and your mind is working overtime. Always seems worse in the night.

I thought terminal ment that you had only got a certain amount of time left, which may not be that long, and incurable ment they could manage your cancer for hopefully quite some time , years even.

My cancer is incurable but I think of it as a chronic disease , which they can manage and hopefully one day find a cure for.

They are bringing out new drugs and trials all the time and as you say can slow down the cancer and as I said cure it although they won't use that word.

So no more negative thoughts , just positive . I know it is hard sometimes to be positive but am sure it helps a lot.

Hopefully you will be able to sleep better soon.

Take care and long may your chemo keep your cancer at bay.

Love Pam xxx

grizzlebear
Posted by

Its all worded to help the insurance companies! 

You cant have a terminal diagnosis until the consultant in charge is certain beyond doubt that your lifespan is reasonably going to be less than 1 year. At that point you are allowed to claim terminal early payout of the policy.

Im incurable as are most CLL/SLL sufferers but it is treatable in the first instance to "re-set" the clock for a few years.

Many people have incurable things like MS or ME which is also incurable but not terminal for many many years. 

Terminal and incurable are many worlds apart!

dyad
Posted by

Hello Annette,

Thank you for bringing up this issue.  I hate the word 'incurable'.  I think I'd prefer a phrase such as 'I'm living with managed cancer' or something like that. The difference between incurable and terminal, which has been explained here very helpfully, was not made clear to me when I first heard the words 'your cancer has come back and this time we can't cure it'.  Of course I panicked, and it didn't help when the next contact I had with the medical profession was a phone call from the hospice nurse (in our area Macmillan community nurses are now under the umbrella of the local hospice, aka palliative care nurses).  So of course I thought 'they know something I don't know' and that my time was up.  The only information I gleaned was by searching the Cancer Research UK website which indicated that metastatic anal cancer had a poor prognosis - 6 months to 2 years - so I started getting my affairs in order, paid for a plot in the green burial ground, ordered my felt 'cocoon' (instead of a coffin) and started designing the funeral service.  Now here I am, a year later, feeling a bit of an idiot.  I'm still very much here, on palliative chemotherapy, with what has turned out to be a slow-growing cancer (whereas metastatic AC is usually aggressive), and now beginning to think that I've got years yet, not months.  And reading about other people on this forum has given me new-found optimism. 

My take on it is that all of life is terminal.  We are all standing in a bus lane with our backs to the traffic, and we're all going to be hit by a bus sooner or later.  The only difference between 'incurable' people like us and everyone else is that we know the number of the bus that's going to knock us over.

Love, Dyad

anndanv
Posted by
Thanks all for taking the time to reply. I can see it probably does benefit the insurance companies but why then is it so hard to get travel insurance! I tried more than 12 companies before I found one that would even give me a quote, so I thought, oh dear, they think I'm gonna pop my clogs sooner rather than later! I love the bus theory Dyad but then again anyone could be crossing the road and get hit by one unexpectedly! I have always been a positive person but it gets very hard in the middle oft he night when you are in a lot of pain, to look on the bright side! Thanks again! Love Annette x
Russell75
Posted by

Hi Annette

When I was given the news I had 6mths- 2 yrs I said to the Onc that I had read that not many people lasted over 4 yrs with what I have. Then I asked what is the longest someone has survived and he said 6 years. After telling him to watch this space Ive got too many people to pee off yet. He said you will be getting palliative treatment, I don't recall him saying I was incurable or terminal but the lady Onc I saw a few weeks after I had had chemo that had cleared the mets that had surrounded my upper bowel said there was no cure it will return. So to be honest I say I'm terminal but in respite.Clear as mud innit. Sometimes I feel I should be ( can't think of the word so will use this you'll know my meaning ) iller than I feel at this moment in time. still another bridge to cross when I get to it. Knowing me I will have forgotten me glasses and be well over the bridge before I realise it Rambled on again haven't I sorry. Fortunately we had couple of bob to spare 3 years ago and I said to the wife lets use it to sort out our funerals so the kids don't have the hassle, so we done the same as both our folks had done. it made it some much easier to sort out when they passed away. worth a thought if you can afford it and easy to do. Next time I see the Onc will ask if he can give me a clearer idea of when so I can book the catering. (haha) Actually doing these things and completing them does help a little. The what if's and the whens can look after themselves. Just remember 'Tomorrow's are only Yesterdays Today'  Blowit Ive confused myself now. 

Hope you find a good nights sleep.

Russell 

dyad
Posted by

Ha ha, Russell, you made me laugh!  Actually I asked the same question after I'd got the runaround from the oncs because they really hate that question, don't they?  I mean the 'how long have I got, doc?' question.  So the conversation went like this:

Me:  'I know you won't tell me how long I've got, so this is a factual question which you can't evade, how long is the longest anyone has survived with this?'

Onc:  'Oh, years!' 

Me:  'how many years?'

Onc:  'Mmm, well, three, actually'. 

Ah!  So I regard that as a challenge that I'm going to beat.

Love, Dyad

Russell75
Posted by

Hi Dyad its always nice to make someone laugh. We will both take that challenge on board. Am also thinking of changing my sign in name I put 75 after it as it's my house number but have just realised people will think it's my age. Bugger I'm only 60 but must still have ben having a senior moment

Russell xx

Bentonfive
Posted by

Hi anndanv, can I ask who would insure you to travel as thinking about a family holiday.

Thanks x
roni2008
Posted by

Bentonfive

Don't know if you've noticed but this thread is three years old so it might be best to start a new thread. I used insurewith.com if that's any help.

bonbonlarue
Posted by

Hi Annette,

I fully agree with the mind swirling. I hardly slept at all last night worrying about this new treatment not working. One good thing, though, I have sorted my will and living will and waiting for a quote from the local Funeral Directors so I can pay that off. The lady that called me about the arrangements seemed a bit shocked when I told her what I wanted. :) 

I don't have a problem with what it's called, incurable and terminal are perfectly good descriptors and coating it in sugar won't make any difference!

I've just completed my good deed for the day and heading for nap city for an hour or so.

Happy Wednesday!

x

Bon

Jeannel
Posted by

Another good term is life limiting.  LOL

ruthjp
Posted by

Hi,

I think terminal means less than 6 months left.

Though how they know that Indont know.

Incurable means you will probably not be cred but may live for years.


I agree Inwake up happy and enjoy going for walks which reminds me at am still here when I thought I would not be xx


Ruth