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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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.
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!
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.
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.
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
I was so happy to read your message this morning. My immunotherapy was stopped because it had stopped working and the cancer had spread into pleural fluid . It seems like I have been waiting ages but if my bloods are good I will start on chemotherapy next Tuesday . Hearing how good this was for your husband has really given me some renewed hope. So thank you very much and my very best wishes to you and your husband.
April 2019 found keytruda not working as cancer grown and spread to liver
May 2019 started on 6 cycles of Carboplatin and pemetrexed
August 2019 good response, liver mets gone and put on maintenance pemetrexed
November 2019 had to stop pemetrexed as it had damaged kidneys
April 2020 CT showed progression
May 2020 started Cisplatin for 6 cycles good response
Break of about 6 months because of Covid
Feb 2021 CT showed progression
March 2021 started carboplatin (80% strength) and gemcitibine for 6 cycles good response
August 2021 CT showed disease progression
Appt with consultant due end of November to discuss more treatment (whatever they can give).
I won't kid you, we've had ups and downs, a week here and there in hospital, once for sickness, once for kidneys and the last time for pneumonia and gastroenteritis however he is still going strong. He's still 14 stone plus with a good appetite. He has aches on the side where his cancer is, and he gets more out of breath (stairs and if he walks too fast while talking) but as he tells people he's a healthy looking ill person.
I don't know if you have a drain in for your effusion. He did, for quite a while, but it stopped gradually on its own and the tube was removed. I think for him ( and me) that was one of the hardest times as it was a visible reminder of what he had, plus I had to drain it every other day.
It's amazing how you learn to cope with these things and come out the other side.
Sorry for going on, but as you can see it IS a journey of ups and downs, good responses and progression of the disease, but we still feel lucky that we have fairly good care here under the NHS. We have friends in the USA who have to battle with all sorts of paperwork/insurance etc to get the drugs they need.
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.
Thanks Denzie, I just look and look for success stories against this vile disease. 8 years and 10 months, amazing. I thought I was on death row until I saw your post, it really has given me so much hope, I can’t thank you enough. I start treatment at Christie’s on 6/10, immunotherapy, Atezolizumad (Tecentriq) I’m scared and worried it won’t work. If I got another 8 years I’d be happy with that, I’m 65 so had a good innings! Can’t believe they gave you 10-15 months, you must have been determined to fight! Thank you so much for sharing, sometimes it’s hard with family isn’t it?
Gosh! 11 years! You really are a success story! Did you have immunotherapy? I've been looking at your posts, some good stuff you put on! By the way my favourite books are Bill Bryson, was planning a trip to USA and Canada, funny how your dreams turn to dust!! Thank you and take care x
Immunotherapy, precision medicine and maintenance therapy did not exist when I was treated. No one knows why I had such a durable response to treatment. I am part of a study that is trying to figure out why. My sister calls me a unicorn.
Aw! Denzie your amazing, you must have a really strong inner strength! Was yours NSCLC, had it spread? Mine has spread to upper vertebrae, my Consultant said it's gone for a weak spot, I have osteoporosis you see and a fractured vertebrae. It's nice to talk with you, thank you, family's good but I sometimes think it's too much for them, it takes over your life doesn't it, no sleep, lack of appetite, and all the ups and downs. Take care Pam x
Mine was stage 4 because of its size, the only mets were to the opposite lung. My primary was 13cmx9cmx11cm.
I too had osteoporosis. 4 or 5 months post treatment two of my vertebra collapsed. I had a surgery called a kyphoplasty to repair them. Two years later I had another one collapse and another surgery.
Only someone who has heard the words you have cancer can come close to understanding what is going on with us.
My primary in left lung is 5x3cm. Spread to my fractured vertebrae at the very top, quite a lot of discomfort with that, but funnily no discomfort, pain or coughing with lung, in fact wouldn't have gone GP with lung issues. You like gardening Denzie, I do too and dreading the winter months. No, people don't understand, I've only told family because I don't want to be treated differently. You've really been through it haven't you. Take care Denzie and thank you. Pam
Hello Denzie. Like Loimie I have spent many, many hours trawling through sites in the UK and abroad looking for good news messages. I copy the good ones and save them to look when I am in real need. But might it be possible to have a place where all of the good news messages can be found. It should be exclusively for good news. Somewhere to run to when in dire need.Sorry to bother you with this Denzie. Just a thought
Hello Sally, yes your right, I spend many hours looking for good news and success stories. When I Google stage 4 NSCLC all the depressing statistics come up. You just want to read that it will be ok don't you? I read that I might only have months to live, it makes me cry. My Consultant at Christie's, she's amazing and said 'I'm looking at treating you long term! That's better than a lottery win! Then I think is she just saying that to make me feel better! Take care Pam
Hello Loimie. I do hope I thanked you for for your message which was sent a while ago but just in case I missed you may say a big thank you. You are so right. All it takes is someone like your consultant saying something positive and we are lifted. But its not often you come across a consultant who understands this. We are not asking for a guarantee, just dont rob us of any hope we have. When we sit and think about what is happening we are perfectly capable of robbing ourselves of our hope. Take care and stay with the fight. Here's to our next 15 years.
Thanks Sally, it's so nice to talk with you, it helps me immensely. Family good but sometimes you want to say things you wouldn't say to family. Yes, I've had a bit of a day today, robbing myself of hope, think it's because of this other problem now, spinal compression from a vertebrae that's pressing on spine, from osteoporosis, at least its not the cancer. How are you doing Sally. Sending love and best wishes. Pam
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
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. 😊👍❤
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
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.
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.
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.
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
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.
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
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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Stage 4 - Lung Cancer - spread to Spine, Liver, Kidney
Small cell lung cancer
Stage 4 nsclc advanced to adrenal gland
