Survival stats and how to take them. - The Roy Castle Lu...

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Survival stats and how to take them.

Ian_cee profile image
6 Replies

I had my surgery to remove 2 lobes of my right lung 5 weeks ago and have had my chat about the next steps. The Doctor said they have found microscopic cancer cells (R1) in the site where the tumour was, so I'll be doing the Chemo, Radiotherapy and possible Immunotherapy. I foolishly asked what my chances were and he said with just the surgery there is a 25% 5 yr survival rate, and with the Chemo & Radio it goes up to 40%, and with Immunotherapy it goes to 50%.

Was anyone else here given similar response? Other doctors I've spoken to said ignore the stats on the web because each case is different and do not take into account age and lifestyle factors such as smoking.

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Ian_cee
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Denzie profile image
Denzie

Right now survivorship is in a state of transition. The immunotherapies and targeted therapies have been a game changer. When I was diagnosed in 2010 the 5 year survival rate was 15%.

As a stage 4 patient the probability that I would make it 5years was 1%. It’s just the last 4 years that the rate has increased so significantly. For me reading that your chances increased to 50% boggles the mind.

There is no way to predict which side of that percentage you will come out on. There was no way to predict that I would fall into the 1% that survived 5 years. I did everything that conventional wisdom says not to do. I ate refined sugars & white flour. I enjoyed the occasional ale, wine or whiskey.

I send hope for an excellent outcome. Let us know what chemo drugs they’re giving you and we’ll share what got us past their side effects.

RoyCastleHelpline profile image
RoyCastleHelplinePartnerAsk the NurseRoy Castle

Dear Ian_cee

Everyone can react differently to any drug, there are many factors for this including genetics. Try not to be too disheartened or allow the numbers you have been told to dictate how you will progress with your treatment.

Research has shown that those with a positive mind, even if that is an ongoing challenge and hard to do, actually does make a difference in recovery and some outcomes. Perhaps put the figures to the side and focus on getting through your treatment and rest and recover from this first.

So many have proved not just doctors but statistics wrong, and we would advise if you are looking at the internet to only look for information on approved evidence based sites:

roycastle.org

cancerresearchuk.org

macmillan.org.uk

There are many inspiring and encouraging accounts from those with lung cancer on our website, which you can find in this link:

roycastle.org/campaigns/lik...

If you would like to discuss anything you can either email us at lungcancerhelp@roycastle.org or call our freephone nurse led helpline number on 0800 358 7200

Kind regards

The Roy Castle Support Team

JanetteR57 profile image
JanetteR57

Well done on having had your surgery - it was Dec 2010 when I had half my left lung removed. At the time forums like this weren't around and UK statistics were very grim. I remember reading 29% survived 1 year and 9% 5 years - what I had no idea about at the time was how outdated statistics are.

All studies are by their nature retrospective and usually trials last 5 years or more so take a long time to gather the evidence. In the UK we have a very thorough lung cancer audit showing who has what treatment, where in the country, types of treatments etc.

A colleague who'd had stomach cancer at a similar age (I was 52 at the time) told me to ignore statistics as none of us are numbers and these numbers include every person who's ever died with lung cancer on a death certificate even if they were 90, smoked all their life etc.

Once I had specific detail about the particular rare type of cancer I'd had I only looked for information of that type as a never smoker I guessed the situation might be different which it is - back then, the majority of cases were in s. asian women but in the years since, much more has been studied and is now known about lung cancers (there are many types).

I've become involved lung cancer research since 2014 and seen the evidence that the odds differ dependent on many things - age, fitness, size of tumour, smoking history, exposure to asbestos/radon gas, stage of tumour, other conditions a patient may have, whether close family members developed similar types, etc. There has been an explosion of treatments developed to target certain characteristics of cancers which has really changed the landscape and now immunotherapy.

Every type of treatment has changed since my treatment - for example surgery now in the UK is mostly keyhole rather than open surgery so that improves infection rates, recovery times etc.

The statistics medics quote usually include all comers rather than being particular for your own situation.

My surgeon told me that my recovery was 'up to you - keep as active as you can to redevelop the remaining lobe - if you don't, the lung will remain below par - but if you keep active, it will reinflate/develop like a balloon - with a thinner surface but large enough to do the function as before' and 'a positive attitude helps'.

I wanted to be in the 'survivor' category - the numbers show in NSCLC survivors in every category even stage iv and back then too. I've met patients who've survived 20+ years (before new treatments were available) but because the follow up/recording stops at 5 years, we tend to think that's all that people live beyond treatment which is inaccurate.

I'd go with what the other doctors have said - none of us is a statistic, none of us will fit the characteristics of a homogenised pot of numbers when the conditions are so heterogeneous -

Live your best life..... worrying about the odds of survival can waste so much emotional energy. Having lost my sister aged 40 (not from cancer) and then her daughter last summer (33) from an unexpected bleed on her brain has taught me there are many conditions where people have no idea that their days are numbered, so spurred me on to make the most of every day.... good luck with your recovery and next life chapter.

Ian_cee profile image
Ian_cee

Thanks for the advise, I hope as time goes on I learn to accept this and make the best of the situation. No one knows what's round the corner I guess.

Benjy2018 profile image
Benjy2018

Hi all

I read you response with great optimism. I also try to avoid statistics as they can be too depressing. I had a Stage 1 adenocarcinoma in late 2016 and a right upper lobectomy in April 2017 after several misdiagnoses! I am fit and well apart from ongoing pain in the right lower rib area as a result of the lobectomy. When I hiccup or sneeze it is like a punch in the lower ribs. I exercise and eat healthily avoiding sugar as much as possible policing some products is like a full time job, but try not to be too paranoid. What really freaks me out is the level of monitoring. I had a scan in February whih was all fine, but just cannot wait until Feb 2021 for the follow up, does anyone know a way to secure more regular screening. I was very lucky as I had no symptoms and my tumour was caught early by accident, I just dont want to miss anything! Any advice on this will be truly appreciated.

Many thanks

Susan

KT22 profile image
KT22

My husband was very positive but sadly let down very badly by his oncologist. Please please whatever you do get as many opinions on treatments as possible. Don’t be afraid to get a second or third opinion if you’re unsure.

My husbands oncologist told him he would have a 75%survival with operation, then chemo/immunotherapy....he only had one treatment which weakened his entire body.

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