5 Year Survival Rate : Hi Just curious... - The Roy Castle Lu...

The Roy Castle Lung Cancer Foundation

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5 Year Survival Rate

Tike3 profile image

Hi

Just curious, I get quite upset about this 5 year survival rate. I've read it numerous times. Then yesterday even my oncologist said it. I have NSCLC lung cancer stage 4, apparently the worst and yet I have no symptoms. I've never had symptoms of lung cancer it was found by accident on a scan of my bowel so not the slightest idea when it started I didn't want to ask how long I've got because I'm sure they can't put a day on it but if I'm honest it frightens me about dying at my age I'm 66 I know it may seem old to some but I was fit and healthy. I suppose everyone is. It would really lift my spirits if there's someone on here whose beaten that time limit.

43 Replies

Hi Tike3

There are many who have gone past the 'five year survival rate' and this is an average that is given from research/observation data, ten years ago, this would have been around the 6-12 month survival.

Thankfully lung cancer treatments have improved greatly since then and more research is needed to extend the average survival rate even more, or even better to detect lung cancer much earlier.

It is good you feel well and have no symptoms, hope you hear from others in the forum who have lived beyond the expected average.

If you would like to discuss anything you can email ask the nurse at lungcancerhelp@roycastle.org or our free phone nurse led helpline number is 0800 358 7200 Monday to Thursday 0900-1700 and Friday 0900-1600

Kind regards

The Roy Castle Support Team

Tike, in my mind it's just a guess!. I've been told 1 to 2 years but I'm aiming for 4.

Just hope and stay strong

Hi, just to give you a bit of hope! My mother was diagnosed with small cell lung cancer stage 3b in May 2016, very poor diagnosis most don't live beyond 6 months. Chemo and radiotherapy to chest and brain in 2016 and nothing more since and still here today 6 years on - apparently she is a miracle said the consultant. Keep battling and don't give up - this is the mentality we live by!!!

Tike3 profile image
Tike3 in reply to AnnW1

Thank you Ann for taking the time to reply and reasure me.That's good to hear that your mum has survived 6 years and I'm sure she will carry on many more.

I've had chemo and radiotherapy but it wasn't a smooth ride, I had the first two out of 4 but diverticulitis was diagnosed caused by immunotherapy that didn't work, so chemo started 4 sessions but only had two and I got a bad back due to osteoporosis so they postponed again.

I've had the same chemo and radiotherapy to brain for one brain met. It's amazing she has had no treatment since.

Thank you again and I send my best wishes to you and your mum.

I am 8 years post stage 3B….. just on way to run a half marathon as I type (from passenger seat!). Had chemo, radio (x2) surgeries (x2) but have had clear scans since early 2018. Statistics are a hard read - but I reckon if there is a 1 in X chance - there is no reason why you can’t be the 1…Good luck and enjoy each day xx

Tike3 profile image
Tike3 in reply to Janey_H

Thank you Janey for taking time to reply and give me hope. I'm probably older than you if you're running a marathon! (I'm 66) but like us all wanted a few more years.

It's been a bumpy ride, first immunotherapy gave me Diverticulitis so it was stopped, then chemo was planned but they postponed again due to needing a CT scan for bad back, so only had 2 out of 4, last 2 being 6 months ago.

I know every individual is different but I hope and pray I have a little longer.

Your amazing to be running a marathon after all you've been through and I'm so happy you've had clear scans.

Sending love and best wishes

Pam

Janey_H profile image
Janey_H in reply to Tike3

Hi PamI am now 51, but was diagnosed at 43.

I am sorry you have had a bit of a rollercoaster - it is difficult when initially diagnosed even to know what kind of questions to ask and seems difficult to comprehend sometimes that you are ill.

I do hope that things work out for you and that your treatment plan is clear. Be your own advocate and if you feel your clinical team aren’t with you, don’t forget you can always ask for a second opinion (am UK based and presumed you are?)

All the best to you xx

I was diagnosed stage 4 and given 10 months to live. I am still here 8.5 years later. I wish you the best response to your treatment x

Tike3 profile image
Tike3 in reply to Bow-19

Hi BowThat is so uplifting for me, 8.5 years! I have a brain met but they sat it's asymptomatic (whatever that means) so they're leaving it. I also have a small area in my liver. Has yours spread Bow.

Thank you again you've given me hope.

Best wishes

Pam

Bow-19 profile image
Bow-19 in reply to Tike3

I think asymptomatic means that you aren’t getting any symptoms from it at the moment. Mine was in my bones, liver and eye when I was diagnosed. I have had two brain tumours since then and they have been treated with targeted radiotherapy SRS, which just targets the tumour and not the surrounding tissue x

Tike3 profile image
Tike3 in reply to Bow-19

Thanks Bow. Perhaps they will do that on my mets it's me rushing I should give them time. That's a shock to me didn't realise you can get it in your eye

Thanks for keeping in touch and supporting me

Best wishes Pam

Chester1967 profile image
Chester1967 in reply to Bow-19

Hi Bow that gives me so much hope, long may it continue xx

Bow-19 profile image
Bow-19 in reply to Chester1967

Thank you. Glad to give you hope and wish you a long run too. When I was diagnosed I followed a lady who had been diagnosed 8 years with stage 4. Unfortunately she died last year but that was 16 years after being diagnosed. She was my inspiration and gave me hope. Wishing you the best response to your treatment x

Chester1967 profile image
Chester1967 in reply to Bow-19

You are now my inspiration, I hope im in for the long haul. and the lady did 16 years that’s totally amazing. Long may it continue for us both 😘😘

I too had very poor prognosis Stage IV NSCLC with brain and adrenal mets - 4 years in October! Don’t dwell on statistics we are all individuals and keep strong! ❤️

Tike3 profile image
Tike3 in reply to Elt79

Thank you Elt, 4 years we'll done. Yes your right everyone is different I'll try my best to pull myself out of this depression! My consultant hasn't mentioned anything about prognosis it's just me thinking it's the end of the road.Best wishes to you and thank you

Pam

Hi mine was found by accident too, I was devastated, I didn’t want them to give me a time limit!! I was diagnosed in December 2020, and have carried on working, only taking 2 months off, when I had chemo, I’m now on maintenance chemo, every 3 weeks. If I’m honest, I’m scared too.I have 1 son and he is off to uni in September, my 1st goal is to see h graduate 🤞 what treatment have you had and when was you diagnosed?

Tike3 profile image
Tike3 in reply to Chester1967

Hello ChesterIt is a massive shock when it's found by accident, I had no symptoms probably like you. You are strong to have carried on working, I'm retired.

I am so scared too, we all have goals, you to see you son graduate and me to see my young son have children.

My treatment started last November with immunotherapy that didn't work but gave me Diverticulitis which I was very poorly with so the chemo they planned was postponed. When Diverticulitis was sorted they started me on 4 sessions of chemo, I only had two and then I started with a compression in spine so chemo on hold now because they say I'm not fit enough.

I hope and pray for you your chemo is successful and also that you see your son graduate.

Sending love

Pam

Chester1967 profile image
Chester1967 in reply to Tike3

Hi Pam it was a huge shock, everyone say that I am strong, not emotionally I’m not!!!I had Immune therapy for 1 year, kept everything stable, then a marginal progression I’m November 21, so put me on 6 rounds of chemo till March, which shrunk it all, had a little break I’m now on maintenance Chemo, just hope it keeps everything stable for a long time, I’m 54, don’t want to go anywhere yet!!!

Hope you achieve your goals 😘😘

Danni54 profile image
Danni54 in reply to Chester1967

You will not be going anywhere because you have all of us at your shoulder plus, like Pam, you seem to be stubborn and a fighter ! We have to be ! Thank goodness for this forum because there are such lovely , brave people on here and we all help each other through. Take care and sleep well.

Very best wishes,

Danni xx

Chester1967 profile image
Chester1967 in reply to Danni54

Your right I am a very stubborn person. and I think that’s what helps me through all this and working, helps me mentally!!!You take care xxx

Tike3 profile image
Tike3 in reply to Chester1967

Keep fighting Chester! Easier said than done. My sons say I'm stubborn but this is the biggest fight of our lives.

My brother in law died of prostate cancer after only 12 months because he gave up the fight.

Keep going

Sending best wishes

Pam

Good morning lovely people.I was diagnosed recently in May 2022 with NSCLC stage 4, with Mets in diaphragm and pleural on both lungs. I was very devastated as it was accidentally seen in a scan checking my abdomen. I had no symptoms.

I was started on the Targeted therapy, OSIMERTINIB ( Tagrisso ) tablets on 17th June.

I am quite early on my treatment, just wanted to ask if there is anyone there on this treatment and how they are faring on? Just curious and anxious.

Kasuku.

Bow-19 profile image
Bow-19 in reply to Kasuku

Just checking is you know about the EGFR Facebook group too?

A diagnosis is always a shock and the statistics can seem very bleak especially if you're just googling as so much information is outdated and inaccurate. The majority of UK patients are detected at advanced stage (stage iv) so deemed inoperable but the treatment landscape has changed beyond recognition since my diagnosis in Jan 2011. The nurse specialist who'd been told at 48 that she had advanced stage iv and less than 6 months to live had two targeted treatments for her EGFR+ Non small cell lung cancer which were only available on clinical trials back then and died in 2015. since then those targeted agents have become standard of care for some, immunotherapy has come along and newer treatments for other mutations also available. At the same time every type of traditional lung cancer treatment (surgery, radiotherapy and chemotherapy) have changed and treatment is tailored dependent on so many things.... as has the order of treatments and the dosages. Research is identifying better and more effective ways to treat all the time.

As the lungs have no pain receptors, earlier detection is difficult and many are found via 'incidental' routes (mine was misdiagnosed as uncontrolled asthma!) but for those most at risk, targeted lung health checks are being tried out across different parts of the UK.

Don't give up - I've met many patients during my involvement in lung cancer research which I joined late 2013 who were years out from their diagnosis well before the newer treatments came along. As others have said, none of the situations are a zero sum game so why wouldn't you be in the survivor statistics... also many believe the 5 year means everyone dies at that point rather than recognising that's the standard follow up period so recording beyond that wasn't routinely done. I was 52 when diagnosed and certainly not ready to give up... having lost my sister at 40 (in 2001) and then 3 years ago her eldest daughter (33) it's made me appreciate that many people die young and unexpectedly and don't have time to make the most of that time, taking for granted that we'll have a long life.

Try not to let the thought of a diagnosis dominate your life - live it as best you can - I found the book 'cancer is a word not a sentence' by Dr Rob Buckman helped me put things into better context and reframe the situation. good luck.

Go back and read my messages to you!!! It will be 8 years for me in August and was told I had it way before I was even diagnosed. You will find many of the new aches and pains are actually unrelated to our cancer but are from the tension and stress we have trying to live with this cancer. All the inflammation and arthritis come at us and we must do daily stretches and exercise to relieve them and our brain. This is a journey like a roller coaster ride. We have up's and down's. We have progression and then we are stable for awhile. Lucky ones become NED but I never have. We learn to live with this. Cancer sucks the life out of us but one must become tougher to push through the hard times. My pain has now become chronic and I am trying different pain meds that will allow me to carry on with my life. It is all about choices and goals. Hang in there, I am here for you!

When I was diagnosed, stage 4 prognosis was 10-18 months. I was told 10-15 months. At this time I am 140 months into that.

Hello Tike3. I am so sorry to hear about your diagnosis. I too have stage 4 NSCLC with bone mets. Diagnosed in February 2016 with a prognosis of 3 to 9 months. I have had radiotherapy, chemo and am presently receiving immunotherapy plus denosumab injections to help protect my bones. Over 6 years on I am still vertical and ventilated! 😊 Hoping this and the other responses you have received from the lovely people on this forum give you some hope. Sending best wishes and positive thoughts. xx

Tike3 profile image
Tike3 in reply to Manninmaid

That's amazing 6 years Manninmaid you certainly have given me hope, thank you. I have cancer in two vertebrae which they did you radiotherapy on, but I have another brain met, they did radiotherapy on the first one but no mention of this.

Not sure when treatment starting again I've had a few delays what with diverticulitis that immunotherapy caused and needing a CT scan for my osteoporosis, I've gone 8 months without any now which is worrying.

Sending love and best wishes

Pam

Manninmaid profile image
Manninmaid in reply to Tike3

Thank you. Hope you are able to start treatment again soon and it proves highly effective. xx

Tike3 profile image
Tike3 in reply to Manninmaid

Thank you I hope you continue to do well, its amazing.Wishing you all the best

Pam

xx

HiI’m 11 since and still fighting fit and working full time, take each day as it comes

Tike3 profile image
Tike3 in reply to Liampaul03

11 years! That's just brilliant and it gives me hope. Thank you Pam

xx

Diagnosed 2017 stage 4 in the 1970’s I worked on a cancer ward and would have been dead in 2 weeks try and forget time spans live life to the full and try and keep positive

Tike3 profile image
Tike3 in reply to Kimidge

Yes Kimidge medical knowledge and progress have changed so much, new stuff coming along all the time, I bet chemo had only just come along in the 1970's.

For a start I'm wasting time just thinking about what might happen instead of living life to the full and stop worrying

Thanks for your reassuring advice and support .

Best wishes.

Pam.

Hi Tike3

Tike3 profile image
Tike3 in reply to dscontroller

Hi dscontroller how are you doing

dscontroller profile image
dscontroller in reply to Tike3

I started to type a message to you and was then called away, sorry.

I just wished to tell you that I was diagnosed with Stage 2 small cell cancer in December 2011. This was only discovered as I was having an X-ray for bowel problems when they noticed a shadow on my lung. The X-ray, however, also showed that I had bowel cancer too, quite separate from the lung. One nursing sister said in a jesting way I was greedy for having two cancers at once. Both my wife and I thought originally that was the end of me! Not so.

The NHS pulled out all the stops and on the 12th January, operated on my bowel, removing the cancer. After recovering for 3 weeks exactly, my left lung was removed completely as cancer had started to enter my bronchus. Prior to this, I was only going to have a section of my lung removed.

I was then advised to have 4 sessions of Adjuvant Chemotherapy as a precaution. I managed two before having an internal bleed and being hospitalised yet again. After recovering from that episode, I had the 3rd dose of chemotherapy, but this time had a massive internal bleed, which necessitated a major operation and ten units of blood and the production of a stoma! Fortunately, this was reversed 7 months later.

I was 72 years of age when this started so obviously now 82 years of age and still now staying positive.

I hope you can stay positive and find the future works for you too.

My best wishes for a long future!

I was continually told my cancer would come back, even when i was discharged after 13 years of reviews. Thats now stretched out to over 33 years! Stay well, Terry

Tike, I am sorry for your diagnosis and for the rough road you’ve been on since. It’s a terrible shock to receive the news that you have cancer, the statistics on Google just add to the anxiety. Please know the 5 year survival information is outdated and more importantly, groups ALL lungs cancers together. This means the people in their late 80s, people who were very sick to begin with, people who refused treatment, etc. it’s important to only research reputable websites such as the national institute of health (USA). Try to stay close to this group and other support groups, there is hope. My prayers are with you as you continue on this journey.

Tike3 profile image
Tike3 in reply to Dariada

Hello Dariada Thanks for taking time to reply and reasure me. Yes, a terrible shock still can't believe it now considering I have no symptoms.

I understand what your saying that they are all grouped together and not split into categories,I'd never thought of that, and I won't google anymore!!

I will look on the National Institute of Health, I'm in Manchester UK and treated at Christie's. Are you in USA? How are you, have you been diagnosed long and having treatment. Many trials and research too.

My prayers are with you too as you travel this terrible pathway of cancer

God bless Dariada

Yes, I’m in the US. I was diagnosed on August of 2020. My cancer was found very early by accident. I had surgery to remove half of my left lung and have had no other treatment. I m under surveillance fir two areas of ground glass so it’s still scary especially at scan time.

Tike3 profile image
Tike3 in reply to Dariada

It's surprising how many are picked up by accident like ours. It's good that yours was found early and be removed, I often wonder why mine couldn't be removed the bit where the cancer is upper lobe. I think you stand a much better chance if it can be. Yes!! Scan time, I get petrified!!I'm so happy for you, keep strong, your brill!

All the best

Pam

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