Non small cell stage 4 with spread to... - The Roy Castle Lu...

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Non small cell stage 4 with spread to lymph and adrenal

Hello, well the title says it all really. Recently diagnosed. However I feel well, no weight loss (in fact weight gain) the only symptom a slight cough. My general health is good, i have no other health conditions. Cancer was found by accident when I was being scanned for another reason, so whilst stage 4 still found “early”. I start chemo soon. I’ve read a lot about this and whilst i was devastated to learn the cancer had spread, I expected it. Having read most people find out late.

However, I feel like even though I’m stage 4 there is still positives. Its not spread extensively and my doctor seems hopeful that treatment (as long as it responds) will give me a fighting chance.

Does anyone have similar stories? I’d love to have some real life stories. All these doom and gloom stats really mean nothing, it’s the experience of other fighters and survivors I’m interested in!

Thanks

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Hi Llesing

What a coincidence. Three years ago I was diagnosed with identical symptoms (NSCLC, lymph node and adrenal mets). I’m still here, and most of the time I feel fine.

Like you, I started with chemo. It shrank the tumour a little. 9 months of stability, then it started to grow again. That gave my oncologist an open door to move me to immunotherapy. 25 sessions of that over 14 months held things stable again. I have recently had two sessions of radiotherapy. First a successful session to deal with the expanding lymph node that was affecting breathing and coughing. The second session was directed at shrinking the lung tumour itself and only finished yesterday. Obviously, I don’t know if it’s successful yet.

I view my condition as a long term chronic condition that needs to be managed. I hope that you can get to the same position.

Best wishes

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Thank you for sharing your story. It really does give me hope. It’s all such a shock being that my cough was so minor, I doubt I would of visited the doctor for some time (I probably wouldn’t have gone until it got much worse). My doctor seems positive about my treatment, although nothing is guaranteed in this life. We have to hope for the best! The internet is full of doom with lung cancer but within 30 mins of writing my post I already see people in my position who are fighting and still here!

It brings me hope and for that I very much thank you for making me feel a bit better. I wish you all the very best and hope things continue to get better for you!

People live with asthma, diabetes and other chronic conditions which can be life threatening. This condition is no different and it’s probably more closely monitored than most!

Have a great day x

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Sorry could I ask, is immunotherapy offered with the nhs? My doc has just mentioned chemo. I guess that’s the first line of attack?

Thanks

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Yes, immunotherapy is available through NHS. There are hurdles and rules, but it is available if you match the criteria.

I (eventually) stopped reading Dr Google and decided to trust the system. My Oncologist has increasingly encouraged me to think in terms of the “new cancer”, which can be managed as a long term condition. If you start as being otherwise healthy, and ideally as a non smoker, you have a better chance of long term survival and a pretty normal lifestyle.

Good luck!!

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My husband was diagnosed in September last year with Stage 4 nscc lung adenocarcinoma detected in the lung, lymph nodes in the chest and fluid in the pleura. The only symptoms he had was breathlessness. He started immunotherapy which after 5 months was stopped because it wasn't working as the cancer had spread to the liver. He was started on chemo and now the cancer has shrunk in the lung, the nodes and the fluid around the lung has gone and cancer undetectable in the liver. He has one more chemo hit to go then will be on maintenance chemo. So, after thinking the worse back in September and that perhaps he wouldn't see Christmas, here we are almost a year later. He feels well (apart from chemo side effects) and we are feeling positive. From what we read and speaking to others it seems that everyone is different and that the treatment is getting better and better.

Don't read too much on Google etc. Lots of stuff there is out of date or not relevant.

Enjoy that you're feeling well and think positive.

J

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Thank you for sharing you story, it gives me hope for the future and knowing that there are many treatment options, it’s not try one and then that’s it. Maybe if this was 10 years ago (when the stats are from) it might be a different but we’re here and treatment is making a difference.

I wish you and your husband well. I thank you for giving me some hope that you can live with this x

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It’s been 8 years and 10 months since I was diagnosed with stage 4 lung adenocarcinoma. At that time they told me I might survive 10-15 months. SURPRISE!!!!

Most of the treatments available today didn’t even exist then.

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You’re amazing. Thank you I needed to read that!!

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There are more and more like me with the advent of these new targeted therapy and immunotherapy drugs.

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Wishing you all the best - great that you have such a positive attitude. That helps so much

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Hi I am stage IV NSCLC with dread to adrenal and brain. Diagnosed last October. Like you didn’t feel ‘ill’. I have been on immunotherapy since last November and had radiosurgery to brain. Recent scan very positive and feeling really good so all positive!! Best of luck xx

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Thank you for your kind words and sharing your story. I wish you all the very best with your treatment x

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hi Llesing

great to hear you feel good, a great start to this blip in your life, keep active and believe 100% you'll beat it, I went vegan, take cbd oil and had chemo, and 5 months later its all dormant and has been for over 3 months and I feel good, your in a great position so carry on and just believe and you will beat it, good luck with this and wishing you and your family all the best with this. I was told I was terminal but never believed it. 😊👍❤

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Thanks for your advice and well wishes. Wow you’re amazing, it just shows that whilst docs can give an educated guess as to prognosis they can’t tell the future! All the best! X

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Sorry to read of your diagnosis but glad you're giving the stats a wide berth. almost 9 years ago I went to A&E feeling 'not right' and a 'lesion' was found in my left lung that turned out to be a 7cm adenocarcinoma (non small lung cancer) and half my left lung was removed in open surgery. The limited information at the time on the internet was very depressing but my surgeon was sure that as a younger person, never smoker and fit, I could approach this positively. In the last few years I've been very involved in lung cancer research and attend cancer conferences - so many treatments have changed in the last 5 years and even those that existed before have changed in their approach or the way they are combined with other treatments. The statistics are all out of date and so many can't be trusted. If you must use the internet, I'd recommend using trusted sites such as roy Castle lung cancer foundation, British Lung foundation or European Lung foundation (lung cancer page) as these are regularly updated by clinicians and patient panels. I have met patients since my diagnosis who have survived 20+ years with different treatments and as you've already been told, for many the approach is now as a chronic condition. The main issue is public awareness and general awareness amongst medics who are not involved with lung cancer who still believe the old stats. good luck with your treatment regime - there are plenty on here to give you hope.

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Thank you for your kind words of support. It’s so easy these days to pick up your phone and google. Sometimes you’ve got to trust the doctors who actually know! I’m awaiting results of a biopsy to determine if I’ll be on chemo or immunotherapy, so I’m hopeful to start treatment very soon. I’d like to feel like I’m fighting back instead of sitting here waiting!!

I want to be realistic and I know that this is one hell of a mountain to climb, but I do feel I’ve got a few years left in the tank yet!

Thanks again, I wished I’d ignored those initial sites and just come straight to forums like these. It’s real people and experiences that give you knowledge. Not a number.

Thanks! X

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I'm forever grateful for a colleague who'd just gone through stomach cancer only a couple of years older than me (whose wife is a nurse) who after learning that I'd looked at the very grim statistics at the time told me that none of us is a statistic - we're people - and these statistics are an amalgam of everyone 'lumped in together' - including very old, very sick and everything in between. When I was diagnosed and lost a dear friend suddenly whist recovering from surgery and googled, I was shocked to learn that less than 5% of cancer research was invested in lung cancer at the time due to the incorrect belief/stigma that it was mainly self - inflicted. That is certainly not the case nowadays - I've been lucky enough to travel to UK and European healthcare conferences and hear many clinical trials' progress and results - the UK has access to many clinical trials and we put more patients into such trials than most other countries and our researchers/clinicians are at the cutting edge of lung cancer research including the Lung Matrix/tracer X trial led at Birmingham by Prof. Gary Middleton for CRUK where precision medicine has discovered more about the different genetic mutations in a very complex trial as well as radiotherapy trials, combination trials etc etc. There is a global race on to find ways to detect it sooner, treat it sooner, and have other treatment options available - only 2-3 years ago, the 'better' treatments were saved until other treatment regimes failed but now some of these regimes are given first to kickstart the immune system into responding. My main recommendation is to keep hope and ask questions when unsure - ask your consultant or team for a number/contact name of somebody you could email or write down questions as it's easy to forget them at the time of an appointment. good luck.

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Thank you for this wonderful advice. It’s so healing to read people’s stories and words. I have hope for my future which I’d all but given up after my initial diagnosis. All the best to you x

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Dear Llesing

Welcome to the forum where you will find encouragement and support form those who have experienced this, and is certainly evident in the positive replies that you have had.

You may have seen our website already which is dedicated to lung cancer and provides lots of useful information. I have placed some links below which you may find of use.

This link is our booklet on Chemotherapy:

roycastle.org/app/uploads/2...

This link is our booklet on Targeted Therapies:

roycastle.org/app/uploads/2...

This link is our leaflet on Immunotherapies:

roycastle.org/app/uploads/2...

If you wish to discuss anything you can call us on our Freephone helpline number on 0800 358 7200

All the very best

The Roy Castle Support Team

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Hi I was diagnosed with lung cancer stage 3b in October last year i commenced on pembrolizumab. It was devastating news. I am in my early 60's and quite fit. It took a few weeks to digest in the end I said yo myself I'm not ready to die and this is a fight i want to win. From that day on I remained very positive. My family are very supportive and they gave my cancer a name as they don't like the word cancer. To date pembrolizumab is working for me my lymph nodes in my sternum and collar bones have no visible cancer and my lung tumor has shrunk and inactive managed by the immunotherapy. So I continue to be positive and live life for today. Stay strong and positive if you can. Good luck to you xx

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Thank you for sharing your story, I have found hope that this can be conquered! Even my cancer nurse said that the very same diagnosis would of given me a dire prognosis just a few years ago! No one can look into the future! All we can do is hope and stay positive. All the very best to you and your family. It really does make you realise the things that matter! X

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