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How long do I have to live? Food for thought.

2 Aug 2017 16:53

This research commissioned by Marie Cure draws some interesting conclusions about how inaccurate estimates of life expectancy is when it comes to NHS doctors talking to cancer patients.

"A wide scale analysis by University College London found that more than half of those predicted to die within a specific time lived longer than expected."

The "surprise" question is one I have used with my own Oncology team - including when I was told of my own lousy prognosis (2 to 18 months) back in 2013. 

Definitely food for thought!


http://www.telegraph.co.uk/news/2017/08/02/surprise-question-puts-thousa...

Re: How long do I have to live? Food for thought.

3 Aug 2017 15:51 in response to davek

Wow, that's good to hear, what were you diagnosed with if you don't mind me asking?

Re: How long do I have to live? Food for thought.

3 Aug 2017 20:17 in response to user1

Stage 4 Cancer of the Oesophageal/Gastric junction (T3N3M1) Wink 

Re: How long do I have to live? Food for thought.

4 Aug 2017 14:18 in response to davek

Well good luck, hope it's onwards and upwards for you.

Re: How long do I have to live? Food for thought.

22 Jan 2018 14:51 in response to davek

Gosh that has really cheered me up, to hear how well you have done thus far.  May you continue to prove them wrong.

My husband has just been diagnosed with HGD in Barretts.

We are seeing the consultant tomorrow to talk of treatment. We need re-scope and scans yet.  From everything I have read from stage 0 - through,seems daunting.

I would appreciate any advice along the way.

 

Very best wishes

Re: How long do I have to live? Food for thought.

4 Apr 2018 10:27 in response to davek

Hi davek

Your post has given me some hope as my mum has recently been diagnosed with the same type of cancer except hers is T3N1M1.  Docs have advised an op is not possible and that she have "palliative chemotherapy initially..."  So we're unsure of the future and whether the remark 'initially" means there is chance of other treatment at a later stage, though the Macmillan nurse has said it is very agressive and does not respond to chemo very well.

I noticed another post where you explained you had EOX chemo and sounds like you've had some success?  Can I ask if you made any big changes to your life in terms of following any supplementary therapies as well?  Currently my mum is having a 2 drug combination so I'm wondering how to approach the doctors as after a lot of reading it seems EOX appears to have higher rates of either shrinking tumors or extending life.

Mum is totally overwhelmed and is not facing this head on so I am trying to do as much reading and information gathering as possible to help her.  We are a bit unclear on the prognosis given they have used the words 'palliative' in the same sentence as 'initially' Happy

Appreicate any information you can pass on

Best wishes

Re: How long do I have to live? Food for thought.

4 Apr 2018 17:08 in response to Fee247

Hi Fee,

So sorry to read about your Mum's recent diagnosis and prognosis.

I'm not sure on what basis the MacMillan nurse has said your Mum's cancer is aggressive, unless she is generalising. In my own case we couldn't tell how fast it was growing because I started chemo within 2 weeks of my first CT scan. So there was no baseline to say how rapidly it had grown - it may have taken a few weeks to grow, or it could have been years. The grading can help but it only gives an indication from what I've been told. 

It would be worth asking your Mum's permission to attend her next meeting and ask her oncologist your questions. Sometimes it is easier for someone other than the patient to ask. It was made clear to me from the start that chemo or doing nothing were my only options as the cancer had grown around my aorta which ruled out radio therapy or surgery. I was also ruled out for Herceptin, wrong HER type apparently. So it would be worth asking why they'd said "initially" - I could only guess why they might say that.

So far I've been under three oncologists and none of them could explain why I had an unusually good outcome. They said my "young" age (55 when diagnosed) and relatively good fitness may have been a factor, as my body was able to recover relatively quickly from an aggressive regime of chemo. Apart from that they could offer no insights.

It certainly wasn't down to any lifestyle changes, or anything I've consciously done. I have a fairly healthy diet, but nothing unusual, I've never smoked and I have a moderate alcohol intake. I sometimes jokingly say that red wine is responsible for my continuing survival - usually when people claim that green tea, seaweed or cannabis oil are responsible for theirs Happy I guess I'm just lucky to have responded unusually well to the chemo.

I hope this helps answer your questions.

Best wishes

Dave