Helpline
Speak to a member of our Information Support Team
(Call-back service – 24h answer machine)

020 8973 0011

or email nurse@beatingbowelcancer.org
Beating Bowel Cancer Community

Life with bowel cancer

DianeS

Clarification on Stage 4 please

I've seen my new oncologist today and he has confirmed that I was Stage 4, but as my scans have been clear for almost a year Iam in remission. He said he doesn't like using that word and prefers NED. I have read that the survival with Stage 4 is only 7%. I did ask this and he said yes that's correct but the longer it stays away the better chance you have, but there is a 'big chunk' of a chance it will come back (his words). I sort of understand this, but as each year goes by, and without any recurrence does the 7% increase? I've scared myself now as that is such a low survival rate compared to when I was diagnosed at stage 3 😩😩😩😩

Alan C

@DianeS Sound advice from everyone above. Sod the stats and enjoy your life. Best Wishes.

DianeS

Thank you @kim74 @Lizalou @Chris82 and @Alan C always hits me hard after an oncology appointment. I was going along fine until this appointment.and I just happened to see the stats the other day. It's just being faced with reality sometimes, but thank you for making me see how it's wrong to regard these figures. Your post has made me feel better already @MaryHB so thank you for valued encouragement. ❤️❤️

springer michelle

@DianeS you know what I feel, I know this is good news and you will be ok. Stats, figures, forget them. You are cancer free enjoy it, you are very well monitored so get on now with planning and looking forward to your beautiful daughters wedding :x::x:

Lizalou

Hi again @DianeS
I pondered on this most of last night...thanks for that! (don't worry , I took a sleeping tablet in the end)
Disclaimer...all my 'facts' are from personal experience only.

Even on this forum we know that, in spite of some recent heartbreaking stories, survival rates are much higher.
Forum users are more likely to be struggling; we are less likely to hear from those who have recovered.

The vast majority of sufferers are elderly. My own father died within 2 years of diagnosis but at 87 something was going to get him, in his case it was renal failure.

All statistics are inevitably at least 5 years out of date. In those 5 years treatments have improved dramatically. Even if the treatments are no longer new, surgeons and oncologists are more likely to be experienced.

Even with all the above, I was still worried that the figures didnt stack up. Then I thought to switch things round completely....
'The death rate at stage 4 is 93%' Could this mean that, if you do die of bowel cancer, the chances of being stage 4 are very high? (And my father was one of the 7% who died at stage 2-3)

I haven't a clue if my reasoning is right, but you can definitely prove anything with statistics!

HH79

Hi @DianeS. I know every word lingers in oncology meetings doesn't it. Don't worry about the stage 4 word, like @Chris82 says it just means went somewhere else. (the chaps won't appreciate my writing this but cancer research website now says 10% for women!) and like others have said, those stats include everyone who couldn't have treatment and they are also 5 yr old stats and treatments have changed e.g. More treatment options for liver mets, HIPEC for Peri, all give people longer and sometimes makes them NED. Just hang in there and keep looking forward only. read @blueorchid profile about tight rope walking! You'll soon be at that one year mark. My onc said normally comes back 3-12m after treatment finished so you can breathe then for sure! Let's do some St Albans Waffle House soon! Lots love :x::x::x::x::x:

HH79

Ps also @DianeS v true what @Lizalou says about forum users those struggling. One friend just had HIPEC and pretty much done and first thought she had is step back forums etc, I guess just want to move on and feel normal. I know some like to keep in touch and help others but there will be many many many who just close the book :x::x:

Bear G

Hi @DianeS
Apologies I wasn't able to respond yesterday and also that I haven't been able to read the replies you've had so I'll probably be repeating what's been said. Hopefully I won't be contradicting!

Firstly just a quickie on NED and remission. Here's a thread that covers that:
community.beatingbowelcancer.org/forum/7353-cure-remission-and-ned

The big news is that you're clear, that's fab!

Now on to stage 4 survival stats. In summary, they don't mean much to you as an individual! these stats are overall survival based on historical data and all ages / levels of general health all mushed into one. The only thing that's certain is that you're not in those stats!

What the stats tell us is that bowel cancer survival (all stages) is continually improving. We know there are constant introductions of new surgical techniques, diagnostic tools and medicines so these stats will continue to improve.

You and I will be part of that improvement.

I should point out that I'm not sticking my head in the sand and nor should you, I know I've got a 'limited shelf life' and because of that I'm enjoying living my life. But I'm also choosing to look forward too. You know I'm setting up the STRIVE FOR FIVE programme at the moment, that's all to do with celebrating getting to five years. I'm intending to be here beyond that!!

I've gone on a bit! I hope this makes sense Diane and that this has been of help.

Big hugs
Bear
:x::x:

LABluebell

@DianeS So sorry to hear that the numbers game is messing with your head. Just remember that statistics say that out of every 4 people 1 is crazy so look at your 3 best friends and if they are all OK........
You are positive, proactive and giving yourself the best possible chance of being around cancer free for a long time. Don't let out of date numbers take your valuable peace of mind.Big hugs :x::x::x::x:

Hans

@DianeS @Bear Gst is the master on this one. You are one fab person and slowly walking away from it. Don't this flashback of stats niggle you please. We were told that the stats are very flawed and the fact you are in remission makes me want to dance
Hans :x::x::x:

DianeS

@springer michelle, @Lizalou @HH79 @Bear Gst @LABluebell and @Hans where would I be without you all? You have certainly made me feel better and don't think I will ever take any notice of stats again. Thank you so much for putting my mind at rest, feeling a lot more positive now. Love to you all ❤️❤️❤️❤️

springer michelle

You aren't going anywhere lady. We have years of coffee and cakes :x::x:

Jerry

This is my very first day at this site, I'm not sure if I'm even responding correctly. 1st. I'm sorry but it doesn't sound like your doctor has the best ever bed side manner or is soon to become a motivational speaker!
It would seem to me the most important thing to point out about statistics is it takes somebody to make that 7%
Jerry

Brian

@Jerry A warm Forum welcome to you Jerry. I see you're from the USA! we have a few folk from your neck of the woods. Make yourself at home. Are you a patient, relative or colleague of someone with bowel cancer? Hope you find the support and encouragement you're looking for. Kind regards, B .

Sean

Dunno bout you guys, but im gonna enjoy pushing them stats up!

Bear G

Absolutely @Sean !
I've just gone through my 4th anniversary and am enjoying bending that survival curve.
I'm even spending the next year celebrating getting to the 'golden' 5year mark 😃
We'll definitely push those survival stats up!!

Sean

Right behind ya @Bear Gst ! You know i'm not a big fan when charities put them stats out there. Imagine it must scare the absolute crap out of people. Even has me thinking about my own mortality a bit more than i should. Still, i pay it no mind in general.

angepange

I've pmd you @DianeS.:x::x:

John2628

Hi @DianeS. Two different Bowel cancer professionals have told me recently that the survival stats currently being publicised are outrageously out of date and in the process of being updated. I hope this is the case. :x::x::x:

DianeS

Many thanks @John2628, I really hope so too :x::x:

tonym

Hi @DianeS, I'm not classed as stage 4 but I believe a stage 4 is if the original Tumour has metastasised to other Organs or outside of the Tumour, mine was classed as Locally Advanced stage 3 and quite large so I'd be amazed if it hasn't dropped a few cells whilst it was growing, in short and I'm not being pessimistic in any way I think Cancer is Cancer and although mine has not yet showed any signs of reaching other Organs I'm prepared for it if it does as statistically it has a good chance of doing so, I guess what I'm trying to get over is that although you have been classed as stage 4 you have every chance of kicking it's A**e as someone who is classed as stage 3 or even less.

Tony M